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Carer depression

The following resources examine depression in carers as a result of caring.

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Risk of Depression in Family Caregivers: Unintended Consequence of COVID-19

Background: Coronavirus disease 2019 (COVID-19) is likely to exacerbate the symptoms of poor mental health in family caregivers; Aims: To investigate whether rates of depressive symptomatology increased in caregivers during COVID-19 and whether the unintended consequences of health protective measures, i.e., social isolation, exacerbated this risk. Another aim was to see if caregivers accessed any online/phone psychological support during COVID. Method: Data (1349 caregivers; 6178 non-caregivers) was extracted from Understanding Society, a UK population-level data-set. The General Health Questionnaire cut-off scores identified those who are likely to have depression.; Results: After adjustment for confounding caregivers had a higher risk of having depressive symptoms compared with non-caregivers, odds ratio (OR) = 1.22 (95% CI 1.05–1.40, P = 0.008) evidenced by higher levels of depression pre-COVID-19 (16.7% caregivers v. 12.1% non-caregivers) and during the COVID-19 pandemic (21.6% caregivers v. 17.9% non-caregivers), respectively. Further, higher levels of loneliness increased the risk of depression symptoms almost four-fold in caregivers, OR = 3.85 (95% 95% CI 3.08–4.85, P < 0.001), whereas accessing therapy attenuated the risk of depression (43%). A total of 60% of caregivers with depression symptoms reported not accessing any therapeutic support (for example online or face to face) during the COVID-19 pandemic.; Conclusions: COVID-19 has had a negative impact on family caregivers’ mental health with loneliness a significant contributor to depressive symptomatology. However, despite these detriments in mental health, the majority of caregivers do not access any online or phone psychiatric support. Finally, psychiatric services and healthcare professionals should aim to focus on reducing feelings of loneliness to support at-risk caregivers.

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Analysis of the Components of a Cognitive-Behavioral Intervention for the prevention of Depression Administered via Conference Call to Nonprofessional Caregivers: A Randomized Controlled Trial

Effective and accessible interventions for indicated prevention of depression are necessary and lacking, especially for informal caregivers. Although telephone-based interventions could increase the accessibility for caregivers, randomized controlled trials are scarce, with no examination of prevention to date. Moreover, the efficacy of specific therapeutic components in preventive cognitive-behavioral programs is unknown. The main objective of this study was to evaluate the efficacy of a telephone-administered psychological preventive intervention in informal caregivers with high depressive symptoms. A total of 219 caregivers were randomized to a cognitive-behavioral conference call intervention (CBCC, n = 69), a behavioral-activation conference call intervention (BACC, n = 70), or a usual care control group (CG, n = 80). Both interventions consisted of five 90-minute group sessions. At the post-intervention, incidence of depression was lower in CBCC and BACC compared to CG (1.5% and 1.4% vs. 8.8%). Relative risk was 0.17 for the CBCC and 0.16 for the BACC, and the number-needed-to-treat was 14 in both groups. Depressive symptoms were significantly lower in BACC and BACC groups compared to CG (d = 1.16 and 1.29), with no significant differences between CBCC and BACC groups. The conference call intervention was effective in preventing depression and the behavioral-activation component (BACC) was comparable to the CBCC intervention.

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White Matter Integrity Underlying Depressive Symptoms in Dementia Caregivers

Objective: We sought to determine whether the aspects of white matter connectivity implicated in major depression also relate to mild depressive symptoms in family dementia caregivers (dCGs). Methods: Forty-one dCGs (average age=69 years, standard deviation=6.4) underwent a 7 Tesla 64-direction (12-minute) diffusion-weighted imaging sequence. We compared the fractional anisotropy (FA) of 11 white matter features between dCGs with (n=20) and without (n=21) depressive symptoms (Patient Health Questionnaire-9 scores ≥5). Results: Caregivers reporting depression symptoms had lower FA in tracts connecting to the posterior cingulate cortex (Cohen's d = −0.9) and connecting dorsolateral prefrontal with rostral cingulate regions (Cohen's d = −1.2). Conclusions: Posterior cingulate and dorsolateral prefrontal-to-rostral cingulate white matter, implicated in prior studies of major depression, appear relevant to mild depression in dCGs. 

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Social support, social participation, & depression among caregivers and non-caregivers in Canada: a population health perspective

Objectives: The study used data from the Canadian Longitudinal Study on Aging to investigate the relationships among social support (measured as affectionate support, emotional/informational support, positive social interaction, tangible support), social participation and depression in caregivers and non-caregivers. Method: Hierarchical multiple regression was used to investigate relationships among social support, social participation, and depression. Analyses of variance were used to examine differences in the means of social support, social participation, and depression between the two participant groups. Results: Higher levels of affectionate support, positive social interaction, and social participation were associated with lower depression scores. Social participation was a significant mediator of the relationship between caregiver status and depression. Caregivers reported significantly higher levels of affectionate support, emotional/informational support, positive social interaction, and social participation than non-caregivers. There were no between-group difference in depression scores. Discussion: The study provides support for the beneficial role of social participation in preserving caregiver mental health. Results are discussed in the context of policy and practice implications for caregivers in Canada. 

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Identifying treatment effects of an informal caregiver education intervention to increase days in the community and decrease caregiver distress: a machine-learning secondary analysis of subgroup effects in the HI-FIVES randomized clinical trial

Background Informal caregivers report substantial burden and depressive symptoms which predict higher rates of patient institutionalization. While caregiver education interventions may reduce caregiver distress and decrease the use of long-term institutional care, evidence is mixed. Inconsistent findings across studies may be the result of reporting average treatment effects which do not account for how effects differ by participant characteristics. We apply a machine-learning approach to randomized clinical trial (RCT) data of the Helping Invested Family Members Improve Veteran's Experiences Study (HI-FIVES) intervention to explore how intervention effects vary by caregiver and patient characteristics. Methods We used model-based recursive partitioning models. Caregivers of community-residing older adult US veterans with functional or cognitive impairment at a single VA Medical Center site were randomized to receive HI-FIVES (n = 118) vs. usual care (n = 123). The outcomes included cumulative days not in the community and caregiver depressive symptoms assessed at 12 months post intervention. Potential moderating characteristics were: veteran age, caregiver age, caregiver ethnicity and race, relationship satisfaction, caregiver burden, perceived financial strain, caregiver depressive symptoms, and patient risk score. Results The effect of HI-FIVES on days not at home was moderated by caregiver burden (p < 0.001); treatment effects were higher for caregivers with a Zarit Burden Scale score <= 28. Caregivers with lower baseline Center for Epidemiologic Studies Depression Scale (CESD-10) scores (<= 8) had slightly lower CESD-10 scores at follow-up (p < 0.001). Conclusions Family caregiver education interventions may be less beneficial for highly burdened and distressed caregivers; these caregivers may require a more tailored approach that involves assessing caregiver needs and developing personalized approaches.

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Comparison of the Effect of Nurses' Education on Stress, Anxiety and Depression of Family Caregivers of Patients Hospitalized with Schizophrenia Disorder

Background of the Study: The present study aimed to determine the effectiveness of family education on depression, anxiety, and stress of family caregivers of the patients with schizophrenic disorders hospitalized in Zahedan Psychiatric Hospital. Methods: The present study was a randomized clinical trial; it evaluated the effect of a four-week psychological training program on 100 family caregivers of the patients with schizophrenic disorders hospitalized in Zahedan Psychiatric Hospital. Depression, anxiety, and stress of caregivers were determined using DASS, version 21, questionnaire. Results: Based on the analysis, the effect of education was only observed in the nurses' group, and the level of anxiety, stress, and depression decreased significantly. Having compared between the nurse and control group, the anxiety level in this group decreased significantly after the training program, and the two factors of stress and depression decreased considerably and tended to be significant. Results: In summary, the present study has shown that nursing education had a significant impact on anxiety, stress and depression factors in the patients' families; this can be employed as a new approach to improve schizophrenia patients and their families.

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Development of a mobile app for family members of Veterans with PTSD: identifying needs and modifiable factors associated with burden, depression, and anxiety

Family members of Veterans with posttraumatic stress disorder (PTSD) face high levels of burden that are poorly addressed by existing mental health services. Widely distributed mobile interventions could play a role in addressing these unmet needs. The purpose of this study was to characterize caregiver burden in those seeking a mobile app for self-management of stress symptoms and to develop a model to guide mobile interventions for family members. Those living with a Veteran with PTSD (n = 212) and interested in using a mobile intervention agreed to participate. The majority reported moderate-to-severe levels of depression (60%) and/or caregiver burden (59%). Relationship quality, communication, and self-efficacy for caregiving were the strongest predictors of negative outcomes (p’s <.001), and qualitative results identified several additional unmet needs (e.g. relationship concerns, safety concerns). This study identifies potential mechanisms by which a mobile app could improve family functioning in the context of PTSD.

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Unmet needs of family caregivers of hospitalized older adults preparing for discharge home

Objectives: To describe unmet needs of caregivers of hospitalized older adults during the transition from hospital back home, and identify subgroups with different needs. Methods: Patients and family caregivers were recruited from an acute care hospital in Montreal, Canada. Measures included Instrumental Activities of Daily Living (IADL), Hospital Anxiety and Depression Scale (HADS), Zarit burden scale, and Family Inventory of Needs. Dimensions of unmet needs were explored with principal component analysis; regression tree models were used to identify subgroups with different unmet needs. Results: A total of 146 patient-caregiver dyads were recruited. Three categories of caregiver unmet needs were identified: patient medical information; role clarity and support; and reassurance. Caregiver subgroups with highest unmet needs were those with high burden of care plus depressive symptoms (n = 46) and those caring for patients with low IADL scores (n = 10). Discussion: Caregivers with high burden and depression are those with the greatest unmet needs during the care transition.

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Effectiveness of a psychoeducational intervention for caregivers of People With Dementia with regard to burden, anxiety and depression: A systematic review

Aim To assess the effectiveness of psychoeducational interventions with respect to burden, anxiety and depression in family caregivers of People With Dementia living at home. Background In dementia, the family assumes the role of main caregiver, maintaining the patient in a good state of health. Nevertheless, burden, anxiety and depression may have negative repercussions in caregivers. Therefore, professional supports through psychoeducational programmes are recommended as interventions for improving caregivers' health. Design A quantitative systematic review. Data Sources Electronic searches were performed in CINAHL/AMED/CENTRAL/Web of Science/LILACS/PUBMED from January 2005–August 2018. Review Methods The review was conducted using the JADAD scale to assess bias risk and the quality of the randomized controlled trials (RCTs) and the CONSORT instrument to assess study quality report. The extracted data were reviewed by independent reviewer pairs. The review was reported using PRISMA. Results A total of 18 RCTs met inclusion criteria. Seven were classified as Technology‐based Interventions and 11 as Group‐based Interventions. Conclusion Psychoeducational interventions for caregivers allow them to increase their knowledge of the illness, develop problem‐solving skills and facilitate social support. Technology‐based Interventions significantly affect burden while Group‐based Interventions affect anxiety, depression, insomnia and burden and quality of life and self‐efficacy. Impact Research findings can be used to classify caregivers in future interventions according to illness stage to obtain more precise results.

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Palliative care needs in Parkinson's disease: focus on anticipatory grief in family carers

Background: A diagnosis of Parkinson's disease (PD) has a significant psychological impact on both the person diagnosed and their loved ones, and can have a negative effect on family relationships. Caring for someone with a long-term progressing illness may cause anticipatory grief, i.e., experienced before a bereavement. This has been widely studied in illnesses such as dementia and cancer, but less so in relation to PD. The study aims were: (I) to demonstrate the occurrence of anticipatory grief experienced by carers of people with PD; (II) to explore how this grief relates to caregiver burden and caregiver depression and demographic variables. Methods: Family carers of people with moderate to advanced PD (Hoehn & Yahr stages 3-5) were invited to complete a survey, including demographic questions and three questionnaires: Zarit Burden Interview (ZBI); 16-item Geriatric Depression Scale (GDS); and Anticipatory Grief Scale (AGS). Results: Anticipatory grief was common among carers of people with PD [mean AGS score =70.41; standard deviation (SD) =16.93; sample range, 38-102]. Though distinct concepts, carers with higher burden and depression scores also experienced more anticipatory grief symptoms. Carers experiencing higher anticipatory grief tended to be caring for someone of a younger age, displaying more non-motor symptoms, at a more advanced disease stage, and who considered either themselves and/or their loved one as depressed. Conclusions: Carers of people with advanced PD experienced anticipatory grief, as well as depression and a high caregiver burden. To improve carer outcomes, our focus should include the period both before and after the death of a loved one, and carers should receive regular psychological assessment and support.

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Factors associated with suicidal ideation in caregivers of stroke survivors

Objective: to identify factors associated with the presence of suicidal ideation in caregivers of stroke survivors. Methods: cross-sectional survey conducted with 151 primary informal caregivers. The Depression Anxiety and Stress Scale-21 and a questionnaire were used to evaluate the presence of thoughts of suicidal ideation, whose data were analyzed by descriptive and inferential statistics. Results: most caregivers had normal levels of depression (76.8%), anxiety (76.2%) and stress (79.5%), and showed no thoughts of suicidal ideation (70.9%). The correlation between scales showed that thoughts of suicidal ideation rise proportionally to the increase of anxiety, depression and stress levels. Conclusion: it was observed that high levels of depression, anxiety and stress favored the increased frequency of suicidal thoughts among caregivers of stroke survivors.

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Being a caregiver as a determinant of quality of life and as a contributor to depressive symptoms

Background. Taking care of elderly, ill and disabled people, as well as rearing children alone, involve a number of medical, psychological, economic and social problems. Objectives. The aim of this study was to assess QoL and the severity of depressive symptoms in nonprofessional caregivers compared to non-caregivers. Material and methods. The study involved 460 (100%) participants, including 335 (72.8%) women and 125 (27.2%) men. The individuals were divided into two groups of the same size: a study group of 230 (50%) caregivers and a control group of 230 (50%) non-caregivers. 35.2% (n = 81) of the caregivers were taking care of an adult family member (parent, husband, wife, sister or brother), and 64.8% (n = 149) were mothers rearing children alone, of whom 91 women (19.8% of the whole study sample) were unmarried. The instruments employed in this study were the World Health Organization Quality of Life-Bref (WHOQoL-Bref) questionnaire, the Beck Depression Inventory and a questionnaire of our own devising. Results. The caregivers (p = 0.001) had lower general QoL. the non-caregivers (control group) scored 4 points more for general QoL, which was associated with a difference in the scores for the WHOQoL-Bref physical health domain. There were statistically significant differences in general QoL (p = 0.031) and in QoL scores in the physical health domain (p = 0.043) between the subgroups of caregivers. Conclusions. Estimating the extent of non-institutional care and concern for the quality of caregivers' lives will improve the physical and mental functioning of both caregivers and those under their care. Regardless of the nature of care, state of health and family relationships, caregivers should receive support from healthcare professionals, the local community, authorities and volunteers.

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Quality of life, psychological well-being, and resilience in caregivers of people with acquired brain injury (ABI)

Aim: The study aims to examine whether characteristics of patients with Acquired Brain Injury–ABI (time elapsed since injury, level of dependence and behavioral problems) and resilience factors of the caregiver predicted caregiver well-being (quality of life, anxiety,depression and positive aspects of caregiving). Methods: 78 voluntary family caregivers (75.6% female) of patients with ABI completed the Barthel Index, Head Behavior Injury Scale, Questionnaire of Resilience in Caregivers of Acquired Brain Injury, WHOQOL-BREF, Hospital Anxiety and Depression Scale,and Positive Aspects of Caregiving Scale. Correlation analysis and stepwise regression were carried out. Results: Time elapsed since injury showed a negative relationship with positive aspects of caregiving. On the other hand, care-recipients’ behavioral problems showed significant associations with all caregiver variables: negatively with quality of life and positive aspects of caregiving, and positively with anxiety and depression. Regarding resilience, we found a positive relationship with quality of life and positive aspects of caregiving, and a negative association with anxiety and depression, showing better predictive power with depression. Conclusions: We confirm the relevance of developing multidisciplinary caregiver intervention programmes focused on positive ways to handle care-recipients’ behavioral problems and developing positive coping skills, such as positive reinterpretation, acceptance and seeking social support, that may optimize caregiver resilience. 

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Direct and indirect predictors of burden among Bedouin caregivers of family members with terminal cancer in Israel

Objective: The diverse demands of cancer care, which require time, psychological, physical, and material resources, often lead to caregiver burden. Studies with caregivers from ethnic minority groups suggest that they have unique beliefs and may experience different perceptions of role demands and caregiving. The aim of this study was to identify direct and indirect predictors of burden among Bedouin caregivers of family members with terminal cancer in Israel. Methods: A total of 101 Bedouin family caregivers of terminal cancer patients participated in this study. Participants were recruited from the oncology department of the largest medical center in southern Israel. The questionnaire battery included the Arabic version of the Zarit Burden Interview and other reliable measures validated for cancer caregiving. We performed path analyses on data allowing us to identify hypothesized, and un-hypothesized predictors of burden in this understudied population. Results: Most caregivers were adult children, followed by spouses, siblings and other family members. In our model, caregiver burden was directly predicted by depressive symptoms and (absence of) social support. Burden was indirectly predicted by quality of life (via depressive symptoms), optimism (via social support), emotional exhaustion (via quality of life and depressive symptoms) and mortality communication (via emotional exhaustion, quality of life and depressive symptoms). Conclusion: Social support and depression are the most important factors among all studied measures. Culturally-tailored intervention programs are required to foster community care and mitigate burden for Bedouin and other ethnic minority groups in Israel. 

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Caring for Family Members With Alzheimer’s and Burnout Syndrome: Impairment of the Health of Housewives

Being a housewife may already be a psychosocial risk factor leading to chronic stress and burnout, and this may be aggravated when the housewife must also become the caregiver of a family member with Alzheimer’s. The burnout syndrome and how it can affect general health and the presence of emotional disorders were studied in housewives who were family caregivers of an Alzheimer’s patient. The sample selected was made up of 193 housewives, 96 of whom were also caregivers for a family member with Alzheimer’s. Sociodemographic measures used were the Maslach Burnout Inventory and The General Health Questionnaire. Burnout was found in a significant percentage of participants. Emotional exhaustion, effect on general health, and presence of emotional disorders were higher in caregivers. Emotional exhaustion, general health, and anxiety were more influential, while depersonalization affected the appearance of depressive symptoms more. Being a caregiver and emotional exhaustion appeared to be the best predictors of emotional disorders. It was confirmed that emotional exhaustion influenced appearance of anxiety and depression equally in both groups. In the case of caregivers, an exhaustion-illness spiral was produced. In this group, emotional exhaustion seemed to become more severe as a consequence of the presence of chronic illnesses, and possibly influence the number of hours spent on care and having children living at home. Future research should analyze in greater depth and in a larger sample, the role of these variables and widen the focus of attention to personal variables that could be acting as protective factors and could be subject to intervention. The discussion concludes with some actions that should be included in prevention programs for the groups studied. 

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Emotion regulation therapy for cancer caregivers-an open trial of a mechanism-targeted approach to addressing caregiver distress

Informal caregivers (ICs) are integral to care provided to patients facing life-threatening or incurable illnesses. This responsibility causes considerable burden, as approximately one half of ICs report clinically significant symptoms of depression and/or anxiety that persist when left untreated. Psychosocial interventions containing efficacious treatment principles (e.g., cognitive behavior therapy [CBT]) show disappointing results in reducing anxiety and depression in ICs. This may reflect failure of these interventions to specifically target crucial mechanisms underlying the central feature of distress caused by the patient's illness-notably, perseverative negative thinking (PNT). Emotion Regulation Therapy (ERT) is an efficacious CBT developed to explicitly target mechanisms underlying PNT and the emotional concomitants that arise in response to stressful situations. This open trial was conducted to evaluate the acceptability and initial efficacy of ERT adapted to the experience of cancer ICs (ERT-C). Thirty-one ICs provided informed consent and completed eight weekly individual sessions of ERT-C. Participants completed self-report measures of depression and anxiety symptoms, PNT, emotion regulation deficits, and caregiver burden before and after treatment. ERT-C was well tolerated as indicated by 22 treatment completers and feedback provided in exit interviews. ICs demonstrated reduced depression and anxiety symptoms, PNT, and emotion regulation deficits with moderate to large effect sizes (Hedge's g range: 0.36-0.92). Notably, caregiver burden was not reduced but ICs expressed more ability to confront caregiving-related challenges. Findings offer promising but preliminary support for ERT-C as a conceptual model and treatment modality for distressed cancer ICs. 

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Burden of care in caregivers of patients with alcohol use disorder and schizophrenia and its association with anxiety, depression and quality of life

Background Caregivers play a pivotal role in providing care for mentally ill patients. Increase in caregiver burden can make them vulnerable to mental illness themselves.Aims We assessed the severity of burden of care and its association with depression, anxiety and quality of life among caregivers of patients with alcohol use disorder (AUD) and schizophrenia. Methods This was an observational, cross-sectional, single-centred study of 50 consecutive caregivers of patients with AUD and schizophrenia. Participants were recruited from the psychiatry outpatient department of a tertiary care hospital between January and June 2017. The caregivers were further assessed by demographic details, Hospital Anxiety Depression Scale for assessment of depression and anxiety, Zarit Burden Interview for assessment of caregiver burden and WHO Quality Of Life-BREF for assessment of quality of life. Statistical data were analysed using GraphPad InStat V.3.06 (California). Multiple linear regression analysis was applied to identify the predictors of caregiver burden. Results Burden of care experienced by caregivers of patients with AUD is as high as that of caregivers of patients with schizophrenia (U=1142.5, p=0.46). Caregivers experiencing high burden of care are likely to have symptoms of anxiety (U=22, p&lt;0.001), depression (U=32, p&lt;0.001) and poor quality of life (U=84.5, p&lt;0.001). Female caregivers are likely to experience higher burden of care (U=819.5, p=0.006). For caregivers of patients with schizophrenia, anxiety, environmental health, socioeconomic status and patients’ occupation can predict burden of care, while for caregivers of patients with AUD, depression and environmental health can predict burden of care. Conclusion Our study suggests that caregivers of patients with AUD experience burden of care as high as that of caregivers of patients with schizophrenia. Caregivers with high burden of care are more likely to have depression, anxiety and poor quality of life. Trial registration number CTRI/2017/03/008224.

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Predictors of the burden on family carers of patients on haemodialysis in Jordan

Background: Family caregivers of patients on haemodialysis can experience life changes and depression. Aims: This study assessed the self-perceived burden on their family caregivers of haemodialysis patients in Jordan, and the caregivers' perceived burden of caregiving and depression. The predictors of caregiver outcomes were determined. Methods: This cross-sectional study included 190 patients on haemodialysis and their caregivers in Jordan. Patients' self-perceived burden on their caregivers was assessed using the self-perceived burden scale. For caregivers, burden was assessed using the Oberst caregiving burden scale and Bakas caregiving outcomes scale - difficulty subscale. Caregivers' depression was assessed using the patient health questionnaire-9. Mean scores and standard deviations (SD) were calculated. Multiple regression analysis was done to determine the predictors of caregiver outcomes. Results: Patients thought that they were a moderate to severe burden on their caregivers (mean score 36.31, SD 3.48). Caregivers perceived themselves as moderately burdened, and thought that their lives had changed for the worse because of caregiving (mean score 2.82, SD = 0.98). Caregivers were moderately depressed (mean score 1.80, SD 0.42). Multiple regression analysis showed that the perceived difficulty of caregiving tasks and patients' self-perceived burden predicted the caregiver outcomes. The difficulty of caregiver tasks explained 38% of the overall variance in the caregiver outcomes. Patient's self-perceived burden on their caregivers explained 16.4% of the variance. Conclusion: Factors that affect the burden on caregivers of dialysis patients should be identified and interventions considered to support caregivers and reduce this burden.

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Caregiving burden and mental health problems among family caregivers of people with dementia in rural Uganda

Background Alzheimer's disease and related dementias are associated with increasing health burden in low- and middle-income countries. Less well-recognized is the potential health burden experienced by other affected individuals, such as family caregivers. In this study, we sought to profile the burden of care and its association with symptoms of depression and anxiety among informal caregivers of people living with dementia in rural southwestern Uganda. Method We conducted a cross-sectional study of 232 family caregivers of people with dementia. The key measured variables of interest were caregiving burden (Zarit Burden Index) and symptoms of depression and anxiety (Depression Anxiety Stress Scales). We fitted multivariable regression models specifying depression and anxiety symptoms as the primary outcomes of interest and caregiving burden as the primary explanatory variable of interest. Results Family caregivers of people with dementia experience significant caregiving burden, with each item on the Zarit Burden Index endorsed by more than 70% of study participants. Nearly half [108 (47%)] of caregivers had Zarit Burden Interview scores >60, suggestive of severe caregiving burden. In multivariable regression models, we estimated a statistically significant positive association between caregiving burden and symptoms of both depression [b = 0.42; 95% confidence interval (CI) 0.34-0.49] and anxiety (b = 0.37; 95% CI 0.30-0.45). Conclusion Family caregivers of people with dementia in rural Uganda experience a high caregiving burden, which is associated with symptoms of depression and anxiety. Interventions aimed at reducing caregiving burden may have important collateral mental health benefits.

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Social support and depressive symptoms among family caregivers of older people with disabilities in four provinces of urban China: the mediating role of caregiver burden

Background: To examine the relationship between social support and depressive symptoms of Chinese family caregivers of older people with disabilities, and to evaluate the role of caregiver burden as a potential mediator of that relationship.; Methods: A survey questionnaire was completed face-to-face by 567 primary family caregivers of older people with disabilities in four provinces in China. Covariates that may affect depressive symptoms, such as the characteristics of disabled people (socio-economic factors, functional and cognitive capacity) and caregivers (caregiver duration and self-rated health of caregivers) were collected. Social support was measured by the Multidimensional Scale of Perceived Social Support (MSPSS); depressive symptoms were assessed by the shortened 10 item version of Center for Epidemiological Studies Depression scale (CES-D); and the caregiver burden was assessed by the Zarit Burden Interview (ZBI).; Results: The prevalence of depressive symptoms among caregivers was 37.7%. Higher levels of social support was negatively associated with lower depressive symptoms. This relationship was partially mediated by the caregiver burden, where higher levels of the caregiver burden were negatively associated with depressive symptoms. Furthermore, caregivers who were women, spent extended time in caregiving and were in poor health, reported significantly higher depressive symptoms.; Conclusions: Our results indicated that social support was negatively associated with depressive symptoms in family caregivers and in the caregiver burden. The caregiver burden partially mediated the social support-depressive symptoms association. Interventions for family caregivers should include increasing social support, health monitoring and structured interventions to reduce the caregiver burden and attenuate family caregivers' depressive symptoms.

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Predictors of Depressive Symptoms in Heart Failure Caregivers

Heart failure is a serious and complex chronic illness and family caregivers often assist these individuals in performing self-care. Unsurprisingly, caregivers often are overwhelmed by daily activities associated with heart failure management and frequently have depressive symptoms. This study examined predictors (i.e., sociodemographic and clinical characteristics, social support, social problem-solving, family functioning, and objective and subjective burden) of depressive symptoms in 530 informal caregivers of individuals with heart failure in a large cross-sectional, descriptive study in the community. Younger caregivers who provided care for longer periods of time, lived in rural areas, and had less social support and lower problem-solving skills were more likely to have depressive symptoms. These findings emphasize the need for further studies to develop dynamic and innovative approaches that incorporate multiple components to lessen caregiving challenges. Social support and problem-solving skills training may be useful components to lessen depressive symptoms in these younger, rural caregivers.

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The influence of songwriting on quality of life of family caregivers of people with dementia: An exploratory study

Introduction: Living with a person with dementia (PWD) causes physical and psychological problems in family caregivers (FCGs), as well as a reduction in their Quality of Life (QOL). The purpose of this study was to examine the possible effectiveness of the therapeutic songwriting method for improving the QOL and well-being of FCGs of PWD. Methods: The sample of caregivers (n = 21) was divided into three homogeneous groups that received 12 intervention sessions. A non-randomized, quasi-experimental design with repeated measures (pre-post intervention) was employed to determine a possible therapeutic effect. The State-Trait Anxiety Inventory (STAI), Short-Form Health Survey (SF-36v2), Beck Depression Inventory, and Rosenberg Self- Esteem Scale were administered before and after the intervention. Results: The results showed a decrease in anxiety and depression scores and an increase in scores of self-esteem after the intervention. Regarding QOL, post-intervention scores in the Mental Component Summary and Mental Health were significantly higher. In contrast, a small effect size was observed for difference between pre-test and post-test on the subscales of QOL: General Health, Social functioning, Role Emotional and Bodily Pain. Discussion: This exploratory study concludes that therapeutic songwriting can help to reduce caregivers' symptoms of depression and anxiety and improve their perceived self-esteem and QOL. This work reinforces the progress made to date and provides new results that highlight the benefits of music therapy for FCGs of PWD.

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Health characteristics and outcomes of caregivers in the United States: An Analysis of the 2017 Health Information National Trends Survey (HINTS)

Background: Caregivers are essential for assisting people with disabilities to fully participate in their communities. Past research has primarily focused on family caregivers in the U.S. providing care to older adults rather than children and adults with disabilities.; Objective: This paper examines the demographic and health characteristics of caregivers of children and adults with disabilities across the lifespan using data from the 2017 Health Information National Trends Survey (HINTS).; Methods: Chi square, t-test, linear and logistic regression analyses show differences between caregivers and non-caregivers related to gender, age, employment, and specific health outcomes.; Results: Of 3285 respondents, 18% self-identified as caregivers of children or adults with disabilities (n = 546). Almost one-third of all caregivers reported being diagnosed with depression or an anxiety disorder as compared to one-fifth of non-caregivers. Psychological distress was associated with an increased risk for a diagnosis of depression/anxiety. We also found that distress decreased with age when controlling for other factors.; Conclusion: This paper increases knowledge of a growing segment of family caregivers providing care for members with disabilities across the lifespan. Research and policy needs are discussed.

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Factors associated with depressive symptoms in elderly caregivers with chronic pain

Objective: to identify factors associated with depressive symptoms in elderly caregivers with chronic pain.; Method: the study included people 60 years of age or older who reported chronic pain and cared for another elderly person living in the same household (n=186). Statistical analyzes were performed using the Mann-Whitney test, univariate and multiple logistic regression.; Results: most participants had no depressive symptoms (70.4%), 24.2% had mild depressive symptoms and 5.4% had severe symptoms. Univariate analysis showed that the variables family income, number of diseases, number of medications in use, pain intensity, overload and perceived stress were associated with depressive symptoms. Multivariate analysis found an association with perceived stress (95% CI 1.101-1207) and number of medications (95% CI 1.139-1.540) in use.; Conclusion: factors associated with depressive symptoms in elderly caregivers with chronic pain were stress and the number of medications in use.

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Depressive Symptoms After Ischemic Stroke: Population-Based Comparisons of Patients and Caregivers With Matched Controls

Background and Purpose- Persistent depression after ischemic stroke is common in stroke survivors and may be even higher in family caregivers, but few studies have examined depressive symptom levels and their predictors in patient and caregiver groups simultaneously. Methods- Stroke survivors and their family caregivers (205 dyads) were enrolled from the national REGARDS study (Reasons for Geographic and Racial Differences in Stroke) into the CARES study (Caring for Adults Recovering from the Effects of Stroke) ≈9 months after a first-time ischemic stroke. Demographically matched stroke-free dyads (N=205) were also enrolled. Participants were interviewed by telephone, and depressive symptoms were assessed with the 20-item Center for Epidemiological Studies-Depression scale. Results- Significant elevations in depressive symptoms (Ps<0.03) were observed for stroke survivors (M=8.38) and for their family caregivers (M=6.42) relative to their matched controls (Ms=5.18 and 4.62, respectively). Stroke survivors reported more symptoms of depression than their caregivers (P=0.008). No race or sex differences were found, but differential prediction of depressive symptom levels was found across patients and caregivers. Younger age and having an older caregiver were associated with more depressive symptoms in stroke survivors while being a spouse caregiver and reporting fewer positive aspects of caregiving were associated with more depressive symptoms in caregivers. The percentage of caregivers at risk for clinically significant depression was lower in this population-based sample (12%) than in previous studies of caregivers from convenience or clinical samples. Conclusions- High depressive symptom levels are common 9 months after first-time ischemic strokes for stroke survivors and family caregivers, but rates of depressive symptoms at risk for clinical depression were lower for caregivers than previously reported. Predictors of depression differ for patients and caregivers, and standards of care should incorporate family caregiving factors.

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Depression But Not Inflammatory Markers Are Increased in Family Versus Nonfamily Caregivers of Persons With Dementia

We investigated quality of life (WHOQoL-BREF), perceived stress (PSS-10), anxiety and depression (HADS-M), life satisfaction (SWLS), and serum levels of interleukin-6 (IL-6), C-reactive protein (CRP), and cortisol in family caregivers (n = 94) and professional caregivers (n = 48) of demented patients, as well as among noncaregivers (n = 30). Compared with professional caregivers, family caregivers had higher scores in HADS-M depression (P = .003) and anxiety (P = .033), lower life satisfaction (P = .04), and lower quality of life in psychological (P = .02) and social relationship (P = .03) domains. There were no differences in serum levels of IL-6, CRP, or cortisol between caregivers and control participants. In multivariable analysis, when family relationship was considered together with the time period of caregiving and results of the Mini-Mental State Examination test in care recipients (n = 118, 12.49 ± 7.99), only family relationship influenced scores in HADS-M depression (P = .004), SWLS scores (P = .011), and WHOQoL-BREF scores in psychological (P = .011) and social relationship (P = .008) domains. In conclusion, family caregivers are more stressed and have deeper depressive and anxiety disorders, lower life satisfaction, and lower quality of life than professional caregivers.

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Clinical effectiveness of the START (STrAtegies for RelaTives) psychological intervention for family carers and the effects on the cost of care for people with dementia: 6-year follow-up of a randomised controlled trial

Background The START (STrAtegies for RelaTives) intervention reduced depressive and anxiety symptoms of family carers of relatives with dementia at home over 2 years and was cost-effective. Aims To assess the clinical effectiveness over 6 years and the impact on costs and care home admission. Method We conducted a randomised, parallel group, superiority trial recruiting from 4 November 2009 to 8 June 2011 with 6-year follow-up (trial registration: ISCTRN 70017938). A total of 260 self-identified family carers of people with dementia were randomised 2:1 to START, an eight-session manual-based coping intervention delivered by supervised psychology graduates, or to treatment as usual (TAU). The primary outcome was affective symptoms (Hospital Anxiety and Depression Scale, total score (HADS-T)). Secondary outcomes included patient and carer service costs and care home admission. Results In total, 222 (85.4%) of 173 carers randomised to START and 87 to TAU were included in the 6-year clinical efficacy analysis. Over 72 months, compared with TAU, the intervention group had improved scores on HADS-T (adjusted mean difference -2.00 points, 95% CI -3.38 to -0.63). Patient-related costs (START versus TAU, respectively: median 5759 pound v. 16 pound 964 in the final year; P = 0.07) and carer-related costs (median 377 pound v. 274 pound in the final year) were not significantly different between groups nor were group differences in time until care home (intensity ratio START:TAU was 0.88, 95% CI 0.58-1.35). Conclusions START is clinically effective and this effect lasts for 6 years without increasing costs. This is the first intervention with such a long-term clinical and possible economic benefit and has potential to make a difference to individual carers. Declarations of interest G.L., Z.W. and C.C. are supported by the UCLH National Institute for Health Research (NIHR) Biomedical Research Centre. G.L. and P.R. were in part supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) North Thames at Bart's Health NHS Trust. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. Z.W. reports during the conduct of the study; personal fees from GE Healthcare, grants from GE Healthcare, grants from Lundbeck, other from GE Healthcare, outside the submitted work.

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Caregiver identity theory and predictors of burden and depression: Findings from the REACH II study

Objective: To examine the relationship between care recipient (person with Alzheimer's disease) ability to perform daily tasks and caregivers' (CG) perceived burden and depression, guided by the caregiver identity theory. We also examine the mediating effect of CG abilities to meet their basic needs. Methods: This study utilizes the baseline data of the REACH II study. Spearman's rho (ρ) was used to test for relationships between burden, reported depression, and each ADLs and IADLs. To further explore the relationship between burden and each ADLs and IADLs, structural equation modeling was conducted using Mplus 8.0. Results: Reported CG total scores indicated increased perceived CG burden with greater number of assisted daily activities. CG depression scores were significantly predicted by reported burden scores and caregiver's ability to pay for basic needs. Importantly, 34.6% of variation in CG reported depressions scores were explained by reported burden scores. A multivariate regression model with reported burden scores, controlling for caregiver's ability to pay for basic needs, explained 36.6% of the variance in CG depression scores. Burden scores and CG ability to pay for basic needs significantly predicted depression scores. Results from the three models indicated that CG burden fully mediated the relationship between daily living skill scores and CG depression. Conclusion: Our study findings suggest the need to more closely examine the link between AD caregiving, financial instability, and mental health and bolster support for policies and programs that offer tangible supports and services to offset the costs of informal AD CG.

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Baseline resilience and depression symptoms predict trajectory of depression in dyads of patients and their informal caregivers following discharge from the Neuro-ICU

Objective: To explore the impact of resiliency factors on the longitudinal trajectory of depressive symptoms in patients admitted to the Neuroscience Intensive Care Unit (Neuro-ICU) and their family caregivers.; Materials and Methods: Patients (N = 102) and family caregivers (N = 103) completed self-report assessments of depressive symptoms (depression subscale of the Hospital Anxiety and Depression Scale; HADS-D) and resiliency factors (i.e., mindfulness and coping) during Neuro-ICU hospitalization. The HADS-D was administered again at 3 and 6 months after discharge. The Actor-Partner Interdependence Model (APIM) was used to assess patient-caregiver interdependence.; Results: Baseline rates of clinically significant depressive symptoms were high among patients (23%) and caregivers (19%), and remained elevated through 6-months. Higher depressive symptoms predicted higher levels of symptoms at the subsequent timepoint (ps < 0.05). Higher baseline mindfulness and coping were associated with lower levels of depressive symptoms at all timepoints (ps < 0.001). APIM analysis showed that one's own higher baseline mindfulness was associated with concurrent levels of depressive symptoms in a partner (p < 0.05).; Conclusions: Depressive symptoms in Neuro-ICU patient-caregiver dyads are high through 6 months. Mindfulness is protective against depressive symptoms and interdependent between patients and caregivers. Early, dyadic, mindfulness-based interventions may prevent the development of chronic depression in both patients and caregivers.

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Analyzing Twitter Data of Family Caregivers of Alzheimer’s Disease Patients Based on the Depression Ontology

In this paper, we present an ontology-based approach to analyze depression of family caregivers of Alzheimer’s disease patients. First, we developed depression ontology called OntoDepression considering the language written in social media. Four major classes and specialized subclasses are defined based on the dailyStrength, which is a well-known social media site centered on healthcare. Next, to find mental health of family caregivers of Alzheimer’s patients, their twitter data is analyzed based on the OntoDepression. Our experimental results show that negative feelings of family caregivers are not clearly revealed, while medical condition of depression symptom is highly rated. Also, their tweets mention a lot about human relationships, work and activities. 

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The relationships among insecure attachment, social support and psychological experiences in family caregivers of cancer inpatients

Purpose: To explore the psychological experiences of the family caregivers of inpatients with gastric cancer or colorectal cancer, and to identify the relationships among insecure attachment, social support, and psychological experiences. Methods: The study design is a cross-sectional quantitative study collecting data through the use of four questionnaires, including the Hospital Anxiety & Depression Scale, the Self-esteem subscale of the Caregiver Reaction Assessment Scale, the Experience in Close Relationship Scale and the Social Support Rating Scale. Hierarchical regression analysis and path analysis were used to analyze the collected data. Results: Data from 207 participants was used. Family caregivers had experienced both depression and high self-esteem. Social support has significant direct effects on both depression and self-esteem. Attachment anxiety had direct effects on depression and social support, attachment avoidance had direct effects on self-esteem and social support. Social support has mediated the relationship between adult attachment and psychological experiences. Conclusions: Caregivers had experienced both negative and positive psychological outcomes. There were differences in the effects of insecure attachment on psychological experiences. Social support plays an important role in the relationships among insecure attachment, depression, and self-esteem. Insecure attachment styles and social support should be considered in tailored interventions for family caregivers to reduce their depression and enhance their self-esteem. 

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Transitions to family caregiving: enrolling incident caregivers and matched non-caregiving controls from a population-based study

Background and Aim: Providing care to an older adult with a disability has been associated with increased risk to the caregiver's health, but most previous studies of caregiving and health compare persons who are already caregivers with poorly matched non-caregiving controls and are often based on convenience samples. In this report, we describe the enrollment of persons who transitioned into a family caregiving role while participating in a national epidemiological study.; Methods: Participants in the REasons for Geographic And Racial Differences in Stroke (REGARDS) study were asked on two occasions 9-14 years apart if they were providing care on an ongoing basis to a family member with a chronic illness or disability. Those who answered "no" and "yes", respectively, to this caregiving question and reported sufficient caregiving responsibilities after their transitions were enrolled in the present study as incident caregivers (N = 251). Participants matched on multiple demographic and health history variables and who reported no history of caregiving were enrolled as non-caregiving controls (N = 251).; Results: Among eligible participants, 84% agreed to participate, and 47% of caregivers reported caring for a person with dementia. Descriptive analyses confirmed the success of the matching procedures for balancing the groups on multiple demographic and pre-caregiving health variables. Depressive symptoms and perceived stress increased significantly after the transition to caregiving.; Conclusion: Comparable, population-based samples of incident caregivers and matched non-caregivers have been enrolled. Future analyses will examine within-person changes in health and circulating biomarkers as a function of the transition to caregiving.

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Repetitive Negative Thinking, Depressive Symptoms, and Cortisol in Cancer Caregivers and Noncaregivers

OBJECTIVES: To examine the effect of informal cancer caregiving and repetitive negative thinking (RNT) on depressive symptoms and salivary cortisol levels. SAMPLE & SETTING: The sample was recruited from a hospital bone marrow unit and caregiver support organizations. It included 60 informal cancer caregivers (52% partners) of individuals with cancer who provided care for a median of 27.5 hours per week for 12 months, and 46 noncaregiver participants. METHODS & VARIABLES: In this cross-sectional study, participants completed questionnaires assessing RNT and depressive symptoms and provided saliva samples to measure cortisol levels. RESULTS: Cancer caregiving and RNT, but not the interaction, were associated with more depressive symptoms. RNT, but not cancer caregiving, was associated with salivary cortisol. A disordinal interaction effect suggests that cancer caregiving was associated with lower cortisol levels, and RNT in noncaregivers was associated with higher cortisol levels. IMPLICATIONS FOR NURSING: Given that RNT is related to depressive symptoms and cortisol, connecting cancer caregivers who experience RNT to resources and the development and evaluation of brief nurse-led interventions to reduce RNT in informal cancer caregivers seems warranted.

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Psychological burden in family caregivers of patients with advanced cancer at initiation of specialist inpatient palliative care

Background: This study prospectively evaluated distress, depressive and anxiety symptoms as well as associated factors in family caregivers (FC) of advanced cancer patients at initiation of specialist inpatient palliative care.; Methods: Within 72 h after the patient's first admission, FCs were asked to complete German versions of the Distress Thermometer, Generalized Anxiety Disorder 7-item scale (GAD-7), Patient Health Questionnaire depression module 9-item scale (PHQ-9) for outcome measure. Multivariate logistic regression analyses were used to identify associated factors.; Results: In 232 FCs (62% spouses/partners), mean level of distress was 7.9 (SD 1.8; range, 2-10) with 95% presenting clinically relevant distress levels. Most frequent problems were sadness (91%), sorrows (90%), anxiety (78%), exhaustion (77%) and sleep disturbances (73%). Prevalence rates of moderate to severe anxiety and depressive symptoms were 47 and 39%, respectively. Only 25% of FCs had used at least one source of support previously. In multivariate regression analysis, being female (OR 2.525), spouse/partner (OR 2.714), exhaustion (OR 10.267), and worse palliative care outcome ratings (OR 1.084) increased the likelihood for moderate to severe anxiety symptom levels. Being female (OR 3.302), low socio-economic status (OR 6.772), prior patient care other than home-based care (OR 0.399), exhaustion (OR 3.068), sleep disturbances (OR 4.183), and worse palliative care outcome ratings (OR 1.100) were associated with moderate to severe depressive symptom levels.; Conclusions: FCs of patients presenting with indication for specialist palliative care suffer from high distress and relevant depressive and anxiety symptoms, indicating the high need of psychological support not only for patients, but also their FCs. Several socio-demographic and care-related risk-factors influence mental burden of FCs and should be in professional caregivers' focus in daily clinical practice.

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Sleep disturbances in caregivers of persons with dementia: contributing factors and treatment implications

Estimates suggest that there are more than 10 million adult caregivers of persons with dementia, two-thirds of who experience some form of sleep disturbance during the course of their caregiving career. Health care professionals are in the best position to detect and address this significant public health problem. Three major contributors to caregiver sleep disturbance are discussed in this paper: (1) the presence of caregiver disrupted sleep routines; (2) caregiver burden and depression; and, (3) the caregiver's physical health status. Successful treatment of a caregiver's sleep disturbance requires careful consideration of each of these contributors. We review and analyze the scientific literature concerning the multiple complex factors associated with the development and maintenance of sleep disturbances in caregivers. We provide a clinical vignette that illustrates the interplay of these contributing factors, and close by providing recommendations for clinicians and researchers treating and investigating the development and maintenance of sleep problems in family caregivers.

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Patient-family communication mediates the relation between family hardiness and caregiver positivity: Exploring the moderating role of caregiver depression and anxiety

Purpose: Despite the theoretical and empirical significance of positive aspects of caregiving in caregiver well-being, relatively little is known regarding family-related predictors of caregiver positivity. This study examines whether patient-family communication (p-f communication) mediates the relation between family hardiness and caregiver positivity and whether the mediating effects of p-f communication are moderated by the levels of caregiver depression and anxiety. Design/Sample: This study used secondary data obtained from a large-scale cross-sectional national survey conducted in South Korea. Participants were 544 spousal cancer patient-caregiver dyads recruited from the National Cancer Center and nine government-designated regional cancer centers in South Korea. Methods: To test the hypotheses, a simple mediation model and two moderated mediation tests were conducted using the PROCESS macro for SPSS. Findings: Higher family hardiness was related to higher p-f positive communication and higher caregiver positivity. The effects of family hardiness were partially mediated by p-f communication, controlling for caregiver sex, education, health status, depression and anxiety, time spent caregiving, and patient depression and anxiety, cancer stage, and time since diagnosis. The mediating effects of p-f communication were not significantly moderated by caregiver depression and anxiety. Conclusions/Implications: Health care professionals could consider p-f communication as a reasonable target of intervention to increase caregiver positivity, even for caregivers with heightened depression and anxiety.

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Occupational therapy for people with dementia and their family carers provided at home: a systematic review and meta-analysis

Objective: To determine the effect of occupational therapy provided at home on activities of daily living, behavioural and psychological symptoms of dementia (BPSD) and quality of life (QOL) for people with dementia, and the effect on family carer burden, depression and QOL.; Design: Systematic review and meta-analysis.; Methods: Eight databases were searched to February 2018. Randomised controlled trials of occupational therapy delivered at home for people with dementia and their family carers that measured ADL, and/or BPSD were included. Two independent reviewers determined eligibility, risk of bias and extracted data.; Results: Fifteen trials were included (n=2063). Occupational therapy comprised multiple components (median=8 sessions). Compared with usual care or attention control occupational therapy resulted in improvements in the following outcomes for people with dementia: overall ADL after intervention (standardised means difference (SMD) 0.61, 95% CI 0.16 to 1.05); instrumental ADL alone (SMD 0.22, 95% CI 0.07 to 0.37; moderate quality); number of behavioural and psychological symptoms (SMD -0.32, 95% CI -0.57 to -0.08; moderate quality); and QOL (SMD 0.76, 95% CI 0.28 to 1.24) after the intervention and at follow-up (SMD 1.07, 95% CI 0.58 to 1.55). Carers reported less hours assisting the person with dementia (SMD -0.33, 95% CI -0.58 to -0.07); had less distress with behaviours (SMD -0.23, 95% CI -0.42 to -0.05; moderate quality) and improved QOL (SMD 0.99, 95% CI 0.66 to 1.33; moderate quality). Two studies compared occupational therapy with a comparison intervention and found no statistically significant results. GRADE ratings indicated evidence was very low to moderate quality.; Conclusions: Findings suggest that occupational therapy provided at home may improve a range of important outcomes for people with dementia and their family carers. Health professionals could consider referring them for occupational therapy.; Prospero Registration Number: CRD42011001166.

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Impact of working situation on mental and physical health for informal caregivers of older people with Alzheimer's disease in Italy. Results from the UP-TECH longitudinal study

Objectives: This longitudinal study explores whether the working situation (no change in working hours despite care, reduction of working hours due to care or not working) moderates mental and physical health of informal caregivers of older people with Alzheimer's disease (AD) in Italy. Methods: Data from a sample of 146 caregivers of older people with moderate AD involved in the UP-TECH trial across three waves were analysed. Multivariate analyses were used to study the association between independent variables (caregivers' work situation) and dependent variables (caregivers' psycho-physical health). In a second model, elements relating to the caregiver, the cared-for individual and the caregiving situation were added as controls. Results: Being forced to reduce working hours due to care tasks or not being employed independently from care was negatively associated with informal caregiver's physical health, compared with working carers not experiencing reduction of working hours. In the extended model, this result was confirmed. In comparison with working carers not forced to reduce working hours, non-working carers experienced higher levels of caregiver burden and depression, however these results were not confirmed in the adjusted model. Other factors also emerged as important including weekly hours of care, the cared-for older individual's ADL/IADL scores and informal support network. Conclusions: Given the positive effect of labour force participation on health of informal caregivers of older people with AD, policy makers should promote their employment avoiding their forced reduction of working hours, while also putting measures in place to decrease the intensity of informal care provision.

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The effects of a dyadic strength-based empowerment program on the health outcomes of people with mild cognitive impairment and their family caregivers: a randomized controlled trial

Purpose: As an intermediate prodromal stage of dementia, mild cognitive impairment (MCI) causes functional, emotional, and social challenges for both of the person with MCI (PwMCI) and their family caregiver. However, major attention has only been placed on the PwMCI's for cognitive training. This study evaluated a more comprehensive intervention, which integrated both strength-based and empowerment approaches, to address their complex needs in a dyadic fashion.; Patients and methods: This randomized controlled trial allocated 103 MCI patient-caregiver dyads to receive a 14-week dyadic strength-based empowerment program (D-StEP-MCI, n=52) or usual care (n=51). The D-StEP-MCI program consisted of group-based session to the PwMCI, home-based dyadic sessions, and telephone follow-up, with the activities supported the care dyads to navigate their own strengths and resources for integration, together with the trained skills, to optimize role and social engagement in everyday life. Dyadic health outcomes in terms of subjective and objective cognitive function, and neuro-psychiatric symptoms of PwMCI, stress in symptom management of their family caregivers, and depression of the dyads were evaluated at baseline, after the D-StEP-MCI and at 3 months thereafter.; Results: By using general estimating equation, the D-StEP-MCI significantly improved the cognitive function, subjective memory, and mood status of the PwMCI, and the positive changes were maintained at the 3-month endpoints. It also has significantly positive effects on caregivers' stress in symptom management and level of depression.; Conclusion: Our findings showed the health benefit of combining strength-based and empowerment approach in supporting the disease adaptation of PwMCI and caregiver in a dyadic fashion. This study also supports the use of a social interaction approach to optimize the everyday engagement of the PwMCI.

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The Effect of a Nurse-Led Cognitive Behavioral Protocol on Depressive Symptoms and Coping Strategies of Dementia Caregivers

Background: Family caregivers of patients with dementia (PWD) often experience depressive symptoms and use poor coping strategies. Cognitive behavioral interventions may enhance positive appraisals of caregiving-related issues and the utilization of active coping strategies among caregivers, which may help prevent caregiver depression. However, there is a shortage of primary, community-based mental health services in China, and little research has been conducted on the effect of nurse-led mental health programs in this population.; Purpose: This study explored the effect of a nurse-led cognitive behavioral intervention on depressive symptoms and coping strategies among family caregivers of PWD in China.; Methods: This randomized controlled trial used data from a sample of 112 caregivers screened from 276 potential participants in a city in southeastern China. The sample was randomly assigned to an intervention group (n = 56) and a control group (n = 56). The intervention group received five monthly in-home, nurse-led cognitive behavioral sessions and telephone consultations after each session. The control group received five monthly, short, general conversations with nurse interventionists at the participants' homes, in the hospital, or via telephone. Depressive symptoms, coping strategies, and the demographics of caregiving dyads were collected at Time 1 (baseline), Time 2 (the end of the 5-month intervention), and Time 3 (2-month follow-up). IBM SPSS Statistics Version 19.0 was used for data analysis.; Results: Eighty-two participants (intervention group: n = 47, control group: n = 35) completed the three evaluations. No significant group differences were found in baseline characteristics between the two groups. The general linear model repeated-measures analysis of variance indicated a significant difference in depressive symptoms and active coping between groups over time, with p < .001 for the interaction between depressive symptoms and groups and p < .01 for the interaction between active coping and groups. A similar result did not occur for passive coping. The t tests further supported a significant interventional effect on participants' depressive symptoms and active coping.; Conclusions/implications For Practice: This nurse-led cognitive behavioral intervention was effective in decreasing depressive symptoms and improving active coping among study participants. The findings suggest the improvement of mental health services and social policies in China to support family caregivers of PWD.

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Do gender differences in housework performance and informal adult caregiving explain the gender gap in depressive symptoms of older adults?

We assess whether gender differences in domestic time-use, including informal adult caregiving and housework, explain the gender gap in depression among older adults. Using data from the Panel Study of Income Dynamics, we model depressive symptoms as a function of informal adult caregiving and housework. The analytic sample includes 539 men and 782 women. Findings suggest informal adult caregiving is associated with increased depressive symptoms for women (p < .05) and men (p < .05). Time spent on housework is associated with decreased depressive symptoms for women and female caregivers (p < .01). Women may experience elevated depressive symptoms relative to men despite their domestic time-use.

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Developing a random forest classifier for predicting the depression and managing the health of caregivers supporting patients with Alzheimer's Disease

Background: Supporting the caregivers of dementia patients is an important issue in the field of public health. Objective: This study established a model for predicting the depression of dementia caregivers while considering the sociodemographic and health science characteristics of South Koreans. The results of this study provided baseline data for developing and applying a caregiver management App. Methods: This study analyzed 2,592 adults (⩾ 19 years old; 1154 men and 1438 women) who were caregivers (e.g., family and caregivers) of demented elderly (⩾ 60 years old). Results: The results of developed random forest model showed that gender, subjective health status, disease or accidence experience within the past two weeks, the frequency of meeting a relative, economic activity, and monthly mean household income were the major predictors for the depression of caregivers. The prediction accuracy of the model was better than K-NN and support vector machine. Conclusions: It was proved that the developed random forest-based App for predicting and managing the depression of dementia caregivers used an algorithm that has a high predictive power. It is required to develop a customized home care system that can prevent and manage the depression of the caregiver. 

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Depression and Anxiety Among Partner and Offspring Carers of People With Dementia: A Systematic Review

Background and Objectives Family carers of people with dementia (PWD) experience high rates of depression and anxiety. However, the factors that are associated with these mental health concerns among family carers are not well understood. The purpose of this review was to identify factors that are associated with depression and anxiety in family carers of PWD. Research Design and Methods A systematic review was conducted of studies that examined depressive or anxiety symptoms among family caregivers of community-dwelling older adults with dementia. Twenty-six studies met inclusion criteria and were included in the review. Results Depressive and anxiety symptoms were related to demographic factors, dementia characteristics, carer psychological and social factors, and dyadic relationship factors. Some prominent factors were consistently associated with depressive symptoms across studies. Female carers and adult–child carers, rather than spousal carers, were more likely to experience depressive symptoms. Carers' coping strategies and activity restriction were also found to be strongly related to depressive symptoms. Severity of dementia-related problematic behaviors was related to carers' depression and anxiety symptoms. In addition, relationship type and quality were important factors associated with depressive symptoms. Discussion and Implications Several important risk factors for carer depression were highlighted in this review. However, a lack of measurement precision and a reliance on cross-sectional studies limits our understanding of exactly how depression and anxiety progress during the caregiving experience. The implications for prevention and intervention programs for depression and anxiety are discussed, as well as suggestions for future research to improve the quality of research in this area. 

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Contradiction, Similarity, and Uncovered Factors of Depression among Post-Stroke Patients Family-Caregivers

Background: Family caregivers of post-stroke patients face many challenges that may result in depressive symptoms and ineffective care performance. This generates a negative correlation spiral related to the quality of life for both family caregivers and patients. Examining factors related to depressive symptoms among family caregivers is necessary to develop effective care and education programs. Objective: The study aimed to identify the contradictions, similarity, and uncovered factors related to depressive symptoms scores among family caregivers through comparison of examined variables. Methodology: A literature search from December 1988 to March 2016 was carried out using CINAHL and PubMed databases. The initial search found 84 articles. After eliminating duplicates and screening based on inclusion and exclusion criteria, 16 articles were reviewed. Results: Three main factors found were: (1) contradictory factors which included gender, family relationship status, and depressive symptoms scores between caregivers and stroke patients, (2) Similarity factors which included race, age, caregiving burden of family caregivers, functional status of stroke patient, and (3) uncovered factors which included the role of nurses, spiritual value, knowledge of depressive symptoms, conducive living environment, and types of family structure. Conclusions: The contradictions of findings and uncovered factors observed be used as evidence for subsequent investigations. Gender, the different roles of family, relationship, and the severity of stroke should be considered in identifying depressive symptoms among family caregivers in the early stages during hospitalization. Nurses have an important role to identify depressive symptoms because of their active role and greater interaction with family caregivers compared with other health professionals. Implication for nursing and health policy: The study findings highlights the important factors to consider and use in developing health policy related to family education program and early screening for depressive symptoms to reduce and prevent depressive symptoms among family caregivers.

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Associations of preloss and postloss factors with severe depressive symptoms and quality of life over the first 2 years of bereavement for family caregivers of terminally ill cancer patients

Background: Family caregivers carry heavy end-of-life (EOL) caregiving burdens, with their physical and psychological well-being threatened from caregiving to bereavement. However, caregiving burden has rarely been examined as a risk factor for bereavement adjustment to disentangle the wear-and-tear vs relief models of bereavement. Objective/Methods Preloss and postloss variables associated with severe depressive symptoms and quality of life (QOL) for 201 terminally ill cancer patients' caregivers over their first 2 years of bereavement were simultaneously evaluated using multivariate hierarchical linear modeling. Severe depressive symptoms (Center for Epidemiological Studies Depression Scale score > 16) and QOL (physical and mental component summaries of the Medical Outcomes Study Short-Form Health Survey) were measured 1, 3, 6, 13, 18, and 24 months postloss. Results: Caregivers' likelihood of severe depressive symptoms and mental health-related QOL improved significantly from the second year and throughout the first 2 years of bereavement, respectively, whereas physical health-related QOL remained steady over time. Higher subjective caregiving burden and postloss concurrent greater social support and better QOL were associated with bereaved caregivers' lower likelihood of severe depressive symptoms. Bereaved caregivers' mental health-related QOL was facilitated and impeded by concurrent greater perceived social support and severe depressive symptoms, respectively. Conclusion: Severe depressive symptoms and mental health-related QOL improved substantially, whereas physical health-related QOL remained steady over the first 2 years of bereavement for cancer patients' caregivers. Timely referrals to adequate bereavement services should be promoted for at-risk bereaved caregivers, thus addressing their support needs and facilitating their bereavement adjustment.

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Predictors of the personal benefits and positive aspects of informal caregiving

Objective: We investigated a) the number of reported benefits in an informal caregiving situation and b) the factors that predict the caregiver's (CG's) experience of benefits. Method: In this cross-sectional study, we computed univariate analyses and a multiple regression analysis using a benefit score as the dependent variable. Participants were 734 informal CGs who provide care for a person with chronic care needs in Germany. We examined the CG's self-reported physical complaints (GBB-24), subjective burden (CSI), depressive symptoms (PHQ-9), quality of life (CarerQoL), and benefits (BIZA-D). Results: Most of the CGs (87.1%) experienced benefits in at least one field. A higher experience of benefits was significantly associated with: more depressive symptoms (r = 0.10), higher burden (r = 0.17), longer duration of care (r = 0.07), longer daily care time (r = 0.21), more physical complaints (r = 0.15), and a good quality of the relationship between CG and CR (η = 0.13). In the multivariate regression analysis, a good relationship between the CG and CR (β =.157, P <.001), an increased amount of care time (β =.188, P <.001), and a higher level of burden (β =.167, P <.001) were associated with greater CG's benefits. Conclusion: CG benefits are a very important, often experienced, but less-explored construct in caregiving research. Benefits do not seem to be on the opposite end of the same continuum as negative aspects of caregiving. Benefits appear to be a nearly distinct dimension in informal care settings.

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Depressive symptoms among adult children caregivers in China: moderating effects of working status and gender

Objectives: With over one-fifth of the world's older population, shrinking family size and increasing number of women in the workforce, elder care is a growing challenge for families in mainland China. This study explored the moderating effect of working status and gender on caregiving time and depressive symptoms among adult children caregivers in mainland China. Method: Participants were 660 adult children caregivers from a nationally representative sample of individuals aged 45 + (N = 13,204) who participated in the China Health and Retirement Longitudinal Study (CHARLS) Wave 2 (2013). Multiple linear regression was used to analyze the direct effect of caregiving time and the moderating effects of working status and gender on symptoms of depression among caregivers. Results: Significant main effect between caregiving time and depressive symptoms was found controlling for demographic covariates. The three-way interaction between working status, gender and caregiving time was also significant. Working status and gender moderate the effect of caregiving time on depressive symptoms: among employed men and women caregivers, spending more hours providing care predicted fewer depression symptoms. Unemployed men caregivers who spent more hours providing care showed highest level of depressive symptoms. Conclusion: The relationship between caregiving time and depressive symptoms was moderated by working status and gender. Future research is needed to explore factors that influence changes in caregivers' health and well-being over time. 

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175 A Dyadic Approach to Life-Threatening Illness in Older Adults and their Spouse Carers

Background Little research focuses on the older adult with life-threatening illness and their carer simultaneously, nor the role of the interpersonal and familial context around them. The purpose of this study was to identify factors associated with poor mental health and lack of shared appraisal of symptoms. Methods Multilevel modeling was used to examine cross-sectional data from 135 older adult-spouse carer dyads with life-threatening illness (59 with congestive heart failure and 76 with lung cancer). This was a secondary analysis of quantitative data from two studies. Data were gathered using established measures of symptoms (dyspnoea, fatigue, pain), depression, concealment, relationship quality and family support with in-person interviews conducted separately for older adults and their carers. Diagnosis and stage of disease were gathered from clinical records. Results Older adults with heart failure reported significantly more depressive symptoms than older adults with lung cancer, whereas spouses caring for someone with heart failure reported significantly less depressive symptoms than those caring for someone with lung cancer. Greater levels of spouse depressive symptoms were significantly associated with less shared appraisal of the older adult's fatigue and pain interference, controlling for the quality of the relationship between them. Finally, risk factors for higher depressive symptoms of older adults included higher levels of concealing symptoms and worries from their spouse, advanced stage of disease, reporting low relationship quality and low levels of support from family. Risk factors for higher depressive symptoms of spouse carers included being younger and reporting low support from family. Conclusion Findings highlight the importance of taking a dyadic approach to life-threatening illness in older adults and the role of interpersonal and familial variables on the mental health of both members. Interventions to support and strengthen relationships and communication and address depressive symptoms of both members of the dyad are warranted.

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Mental health of carers in Wales: a national population survey

Background Informal care is increasingly common in ageing populations. However, the impact of caring responsibilities on carers’ mental health remains unclear. We used data from the HealthWise Wales (HWW) cohort to examine the impact of caregiving on the mental health of carers. Methods HWW collects demographic, lifestyle, and opinion data, which are linked to routine health-care records, from individuals aged 16 years or older who live in Wales, UK (n=21 779). Mental health was assessed by use of the short Mental Health Inventory (MHI-5) and self-reported diagnosis of mental health conditions. Data on diagnosis of common mental disorders (CMD), including depression and anxiety, were obtained from linked health-care records. Level of caring responsibilities and its impact on the individual's work were self-reported. We estimated associations between caring responsibilities and CMD using logistic regression adjusting for gender, age, and deprivation. HWW received ethics approval from Wales Research Ethics Committee (REC) 3 on March 16, 2015 (reference 15/WA/0076). All participants gave informed consent digitally as a pre-requisite for registration online. Findings The cohort included 3682 carers; 2791 (76%) were female, 2833 (77%) were aged 45 years or older, and 1900 (53%) lived in more deprived areas. The cohort of non-carers included 10 023 people; 7107 (71%) were female, 6030 (60%) were aged 45 years or older, and 4814 (49%) lived in more deprived areas. Of those identifying as carers, 1271 (35%) of 3607 with linked health records self-reported a CMD and 1331 (44%) of 3057 with linked health records had a diagnosis of a CMD versus 3029 (31%) and 2992 (36%) of non-carers, respectively. There was 80% agreement between self-report and recorded diagnosis of a CMD in health-care records. Compared with non-carers, carers were 1·3 times more likely to have an MHI5 score indicating current CMD (odds ratio [OR] 1·28, 95% CI 1·17–1·40; p<0·0001). Participants who had previously given up work to provide care were also more likely to have an MHI5 score indicative of a CMD (1·67, 1·47–1·88; p<0·0001). Being a carer was further linked to the likelihood of self-reported diagnosis of a CMD (1·21, 1·11–1·32; p<0·0001) and of diagnosis of a CMD from health-care records (1·32, 1·21–1·44; p<0·0001), even after adjusting for sociodemographic factors. Interpretation This study suggests that caring is linked to poor mental health, emphasising the potential burden of caring responsibilities on the carers’ mental health across the population. While acknowledging the cross-sectional nature of these data, these findings highlight the need to develop and test interventions that can support informal carers to protect their mental health. Funding Health and Care Research Wales.

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Risk factors for suicidal thoughts in informal caregivers: results from the population-based Netherlands mental health survey and incidence Study-2 (NEMESIS-2)

Background: Previous research suggests that family caregivers contemplate suicide at a higher rate than the general population. Much of this research has been disease specific and in relatively small samples. This study aimed to compare suicidal thoughts between non-caregivers and informal caregivers of people with a variety of conditions, in a large representative sample, and to identify significant risk factors. Methods: The general population study NEMESIS-2 (N at baseline = 6646) included 1582 adult caregivers at the second wave (2010–2012) who also participated at the third wave (2013–2015). Suicidal thoughts were assessed over 4 years, with the Suicidality Module of the Composite International Diagnostic Interview 3.0. The presence of suicidal thoughts was estimated and risk factors for suicidal thoughts were assessed with logistic regression analyses adjusted for age and gender. Results: Thirty-six informal caregivers (2.9%) reported suicidal thoughts during the 4 year study period. The difference between caregivers and non-caregivers (3.0%) was not significant. Among caregivers, significant risk factors for suicidal thoughts included being unemployed, living without a partner, having lower levels of social support, having a chronic physical disorder, a mood disorder or an anxiety disorder, and having impaired social, physical and emotional functioning. These risk factors were also found in non-caregivers. No caregiving-related characteristics were associated with suicidal thoughts. Conclusion: There was no elevated rate of suicidal thoughts in caregivers and risk factors for suicidal thoughts in caregivers were consistent with risk factors in non-caregivers. No association between caregiving characteristics and suicidal thoughts was found. Caregivers with limited resources and in poorer health might still benefit from prevention and intervention efforts

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Web-based interventions to improve mental health in home caregivers of people with dementia: Meta-analysis

Background: Dementia is a major cause of disability and dependency in older adults worldwide. It is often accompanied by general psychological distress, such as depression and anxiety symptoms, among caregivers of people with dementia (PwD). The physical and mental health of the caregiver is a prerequisite and a promise to help PwD continue to live as long and as well as possible. Web-based interventions can provide convenient and efficient support and an education tool to potentially reduce the negative outcomes associated with providing care. Objective: The aim of this study was to examine the effect of internet-based interventions on the mental health outcomes of family caregivers of PwD and to explore which components of the Web-based interventions play an important role. Methods: A comprehensive literature search was conducted in PubMed, Excerpta Medica dataBASE, PsycINFO, Cochrane Database, and the Cumulative Index to Nursing and Allied Health Literature using relevant terms such as Web-based and caregiver as keywords, covering all studies published before June 2018. A total of 2 reviewers independently reviewed all published abstracts, according to established inclusion and exclusion criteria. We extracted information about the participants, interventions, and results and reviewed article quality in terms of the randomized trial methods, using the approach recommended by the Cochrane Handbook for Systematic Reviews of Interventions. Results: A total of 815 caregivers participated in 6 studies, with 4 of the studies using depression as an outcome. The analysis found that depression scores dropped an average of 0.23 (95% CI -0.38 to -0.07; P<.01) after Web-based interventions. In 2 studies of caregivers who were experiencing anxiety symptoms, the average score for anxiety dropped by 0.32 points (95% CI -0.50 to -0.14; P<.01). However, in terms of coping, pain, and stress, the Web-based interventions showed a poor effect. On the whole, the addition of professional psychological support on the basis of education can improve caregivers' mental health. Conclusions: Internet-based interventions were generally effective at reducing anxiety and depression in dementia caregivers, although negative results were found in some studies. As for burden and stress, further research is required. 

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Photojournalism-Based Intervention Reduces Caregiver Burden and Depression in Alzheimer’s Disease Family Caregivers

Purpose: Art interventions have demonstrated holistic benefits for persons living with dementia and their caregivers. In this article, we describe the results of a pilot photojournalism program for 10 unpaid caregivers of persons living with dementia, with respect to caregivers’ experience in the program and their psychological well-being. Design: Caregivers participated in four sessions led by a professional photojournalist who taught principles of photography. Between the sessions, caregivers took photographs that represented what caregiving meant to them using digital cameras provided in the program. During the sessions, instruction was interspersed with discussion of caregivers’ photographs. Method: Caregiver burden and depressive symptoms were measured pre- and postprogram. Qualitative exploration included sessions’ observations, viewing caregivers’ photographs, and recording caregivers’ accompanying comments. Findings: For participants with pre- and postprogram data, caregiver burden decreased significantly (p =.037). For caregivers with pre- and postprogram data, depressive symptoms decreased nonsignificantly (p =.066). Clinically meaningful reductions in caregiver burden and depressive symptoms were attained. Qualitative findings highlighted caregivers’ strong engagement with the project, the facilitator, and other participants, and reflection on multiple aspects of their experience. Conclusions: This intervention helped caregivers creatively communicate their experience and demonstrated efficacy in the improvement of caregivers’ psychological well-being. 

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Hopelessness, Death Anxiety, and Social Support of Hospitalized Patients With Gynecologic Cancer and Their Caregivers

Background Gynecologic cancer can create hopelessness and death anxiety and alter the lifestyle of the affected women and their caregivers. Perceived social support may facilitate coping with this illness. Objective The aim of this study was to determine whether hospitalized patients with gynecologic cancer and their caregivers differ in feelings of hopelessness and death anxiety and how those conditions may be related to their social support. Methods Two hundred patients with gynecologic cancer and their 200 caregivers from 1 university hospital were enrolled in this descriptive correlational study. Study measures included a demographic form, the Perceived Social Support Scale, the Beck Hopelessness Scale, and the Thorson-Powell's Death Anxiety Scale. Data were analyzed using Student t test, Pearson correlation test, and linear regression analyses. Results Patients had higher hopelessness and death anxiety compared with caregivers (P < .001). Patients' perceived social support explained 35% of the total variance in hopelessness and 28% of the variance in death anxiety; caregivers' perceived social support explained 40% of the total variance in hopelessness and 12% of the variance in death anxiety. Conclusion Patients felt hopelessness and death anxiety in greater rates than caregivers. Social support had a significant effect on hopelessness and death anxiety of patients and their caregivers. Implications for Practice Nurses, who are the healthcare professionals spending time with patients and families from diagnosis forward, need to evaluate patients and their caregivers for hopelessness and death anxiety and consider their social support systems during this evaluation.

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Predictors of caregiver burden after stroke in Nigeria: Effect on psychosocial well-being

Background: Family caregivers (CGs) are critical to the care and recovery of stroke survivors (SSs), particularly in the community. However, little is known about their psychosocial well-being, especially in developing countries. In this study, we assessed CG burden, psychiatric morbidity, quality of life (QoL), and predictors of burden. Materials and Methods: We recruited 150 dyads of CGs/SSs from two outpatient clinics in Nigeria. Data were collected through sociodemographic/clinical questionnaire, the Zarit caregiver burden interview, the World Health Organization QoL-BREF, and the Mini-International Neuropsychiatric Interview. Disability in SSs was graded with the Modified Rankin Scale. Results: Compared to CGs who were mostly females (86.7%) with a mean age of 42.8 (±12.6) years, SSs were older with a mean age of 61.6 (±12.5) years and were mainly males (62.7%). The mean CG burden score was 31.6 (±10.5) and eight in 10 CGs, 124 (82.7%) reported moderate-to-severe burden scores. Mental disorders in the form of depression and/or anxiety disorders were diagnosed in 26 (17.3%) CGs. Significant predictors of high-burden scores (P < 0.05) were incontinence in SSs, psychological symptoms in SS, worse poststroke disability, and performance of more CG tasks (B = 8.3, 4.5, 3.9, and 3.5, respectively). CGs QoL scores correlated negatively with burden scores, with medium-to-large effect sizes (r =-0.4-0.6) across QoL spheres. Conclusion: In this study, psychosocial burden in CGs was indexed by various determinants and impacted QoL negatively. Given the integral role of CGs to the care of SSs in the community, mental health services, psychosocial support programs, and stratification based on known vulnerability factors seems viable options for intervention, assessment, and planning. 

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Building Better Caregivers: A Pragmatic 12-Month Trial of a Community-Based Workshop for Caregivers of Cognitively Impaired Adults

Building Better Caregivers (BBC), a community 6-week, peer-led intervention, targets family caregivers of those with cognitive impairments. BBC was implemented in four geographically scattered areas. Self-report data were collected at baseline, 6 months, and 1 year. Primary outcome were caregiver strain and depression. Secondary outcomes included caregiver burden, stress, fatigue, pain, sleep, self-rated health, exercise, self-efficacy, and caregiver and care partner health care utilization. Paired t tests examined 6 month and 1-year improvements. General linear models examined associations between baseline and 6-month changes in self-efficacy and 12-month primary outcomes. Eighty-three participants (75% of eligible) completed 12-month data. Caregiver strain and depression improved significantly (Effect Sizes =.30 and.41). All secondary outcomes except exercise and caregiver health care utilization improved significantly. Baseline and 6-month improvements in self-efficacy were associated with improvements in caregiver strain and depression. In this pilot pragmatic study, BBC appears to assist caregivers while reducing care partner health care utilization. Self-efficacy appears to moderate these outcomes. 

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Comparing the Effects of Grief and Burden on Caregiver Depression in Dementia Caregiving: A Longitudinal Path Analysis over 2.5 Years

Objectives: Caregivers of persons with dementia can experience loss and grief long before the death of the person. Although the phenomenon of caregiver grief has been increasingly described, it is uncertain if caregiver grief has independent effects—separate from the well-studied construct of caregiver burden—on adverse outcomes such as caregiver depression. We sought to compare the effects of baseline grief and burden on caregiver depression at baseline and 2.5 years later. Design and Setting: A cohort study with 2.5 years of follow-up. Participants: Family caregivers of community-dwelling persons with dementia (n = 183). Measures: Participants completed questionnaires with scales that assessed caregiver grief, burden, and depression. Baseline grief and burden scores were included in a path analysis to predict depression at baseline and at 2.5 years. Results: At baseline, grief and burden had synergistic relationships with each other (P = .012), where the high levels of grief amplified the effect of burden on caregiver depression. Both grief and burden had longitudinal effects on caregiver depression at 2.5 years (P <.001 and P = .047, respectively), albeit with some differences in mechanism; both had effects which were indirectly mediated through baseline depression (P < .001 and P = .002, respectively), but only grief had a direct path toward depression at 2.5 years (P = .030), which was distinct from baseline depression. Conclusions and Implications: The findings highlight the need to identify and address caregiver grief in dementia services. They present a window of opportunity to improve caregiving outcomes, especially during the “latent phase” when caregivers encounter loss and grief but have yet to fully experience the debilitating effects of depression.

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Psychosocial singing interventions for the mental health and well-being of family carers of patients with cancer: Results from a longitudinal controlled study

Objective The mental health challenges facing people who care for somebody with cancer are well documented. While many support interventions focus on provision of information or cognitive behavioural therapy, the literature suggests that psychosocial interventions could also be of value, especially given the low social support frequently reported by carers. Singing is a psychosocial activity shown to improve social support, increase positive emotions, and reduce fatigue and stress. This study explored whether weekly group singing can reduce anxiety, depression and well-being in cancer carers over a 6-month period. Design A multisite non-randomised longitudinal controlled study. Setting The Royal Marsden National Health Service Trust in Greater London. Participants 62 adults who currently care for a spouse, relative or close friend with cancer who had not recently started any psychological therapy or medication. Interventions On enrolment, participants selected to join a weekly community choir for 12 weeks (n=33) or continue with life as usual (n=29). Outcome measures The primary outcome was mental health using the Hospital Anxiety and Depression Scale. The secondary outcome was well-being using the Warwick Edinburgh Mental Wellbeing Scale. Using linear mixed effects models, we compared the change in mental health and well-being over time between the two groups while adjusting for confounding variables including demographics, health-related variables, musical engagement and length of time caring. Results Participants in the choir group showed a significantly greater decrease in anxiety over time than participants in the control group (B=-0.94, SE=0.38, p=0.013) and a significantly greater increase in well-being (B=1.25, SE=0.49, p=0.011). No changes were found for depression. Sub-group analyses showed carers with anxiety or below-Average well-being were most likely to benefit. Conclusions This study builds on previous research showing the mental health benefits of singing for people with cancer by showing that weekly singing can also support anxiety and well-being in cancer carers. 

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Long-Term Outcomes of the Benefit-Finding Group Intervention for Alzheimer Family Caregivers: A Cluster-Randomized Double-Blind Controlled Trial

Objectives: To examine the effects of the group benefit-finding therapeutic intervention (BFT) for Alzheimer family caregivers up to 10-month follow-up. Methods: This was a cluster-randomized double-blind controlled trial in social centers and clinics. Participants included 129 caregivers. Inclusion criteria were 1) primary caregiver aged 18 years and older and without cognitive impairment, 2) providing 14 or more care hours per week to a relative with mild-to-moderate Alzheimer disease, and 3) scoring 3 or more on the Hamilton Depression Rating Scale. Exclusion criterion was care-recipient having parkinsonism or other forms of dementia. BFT (using cognitive reappraisal to find positive meanings) was evaluated against two forms of psychoeducation as controls—standard and simplified (lectures only) psychoeducation. All interventions had eight weekly sessions of 2 hours each. Primary outcome was depressive symptoms, whereas secondary outcomes were global burden, role overload, and psychological well-being. Measures were collected at baseline, postintervention, and 4- and 10-month follow-up. Results: Mixed-effects regression showed that BFT's effect on depressive symptoms conformed to a curvilinear pattern, in which the strong initial effect leveled out after postintervention and was maintained up to 10-month follow-up; this was true when compared against either control group. The effect on global burden was less impressive but moderate effect sizes were found at the two follow-ups. For psychological well-being, there was an increase in the BFT group at 4-month follow-up and a return to baseline afterward. No effect on role overload was found. Conclusion: Benefit-finding reduces depressive symptoms as well as global burden in the long-term and increases psychological well-being in the medium-term.

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Development of a Brief Caregiver-centric Screening Tool to Identify Risk of Depression among Caregivers of Hospitalized Older Adults

Objectives: Caregivers of hospitalized older adults experience elevated levels of stress and are at risk of poor health outcomes. There is a lack of screening tools based on self-reported caregiver variables incorporating both protective and risk factors, for early identification of at-risk caregivers. This study reports the development of a caregiver-centric screening tool to identify risk of depression at admission and predicts 3-month risk of depression and quality of life amongst caregivers of older adults with an unplanned admission. Design, Setting and Participants: This prospective cohort study was conducted in the medical wards of a tertiary-care hospital from July 2015 to May 2017. We recruited family caregivers of patients aged 65 years and above who fulfilled the following criteria: a) unplanned admission, b) not residing in nursing homes; and c) requiring assistance in activities of daily living. Measurements: We examined 11 candidate caregiver variables (mastery, burden and nine demographic variables). Risk of depression (score ≥8 on Hospital Anxiety and Depression Scale (HADS-D) depression subscale) was the primary outcome, and was assessed during the index admission. Logistic regression models were used to identify risk factors and risk scores (weights). The total risk scores were then stratified into three risk levels. Predictive validity of the screening tool was assessed using 3-months post-discharge risk of depression and health-related quality of life (HRQoL). Results: The study included 274 caregiver-patient dyads. The mean (SD) age of the caregivers was 59 (10) years with 33.6% caregivers screening positive for risk of depression. The final model comprised three caregiver variables: mastery, burden and education. The total risk scores ranged from 0 to 6 and showed good discrimination (AUC:0.82, 95% CI: 0.77 to 0.87). Caregivers were classified into low-risk (0–1 points), intermediate-risk (2–4 points), and high-risk (5–6 points) groups, with corresponding rates of risk of depression (HADS-D≥8) of 10.7%, 44.6% and 73.3%, during admission. Relative risk rates of the intermediate- and high-risk group using the low-risk group as reference were 4.16 and 6.84 respectively. At 3-months post-discharge, the rates of caregivers at risk of depression or having poor HRQoL also increased corresponding to the three risk levels as per baseline, supporting the predictive validity of the tool. Conclusions/Implications: The caregiver-centric tool is a novel, practical, self-administered, relatively brief caregiver-centric instrument that can be used for rapid screening and stratification of caregivers at risk of depression. Uniquely, the tool comprised of assessment of protective factor (mastery) in addition to risk factors to provide a holistic assessment of the caregiver. It can be incorporated as part of older adults’ admission evaluation so that prompt intervention can be rendered to their at-risk caregivers. 

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Caregiver expressed emotion as mediator of the relationship between neuropsychiatric symptoms of dementia patients and caregiver mental health in Hong Kong

Objectives: Quality of life among Hong Kong's family dementia caregivers is a current heightened public health concern. This was one of the first East Asian studies to examine the role of family expressed emotion (EE) in the negative caregiver outcomes associated with dementia caregiving. EE comprises overinvolved and critical communications in families of people with mental illness. In this research, caregiver EE was evaluated as a mediator of the relationship between behavioral and psychological problems associated with dementia (BPSD) and negative caregiver outcomes. Method: Participants were 89 Hong Kong family caregivers (79% female, 84% married, 43% >50 years of age) of people with diagnosed dementia, recruited from elder day care centers. Caregivers completed the Neuropsychiatric Inventory (NPI), Cohen Mansfield Agitation Inventory (CMAI), Level of Expressed Emotion scale (LEE), Zarit Burden Interview, and Center for Epidemiological Studies Depression Scale (CES-D). Results: Agitation, delusions, hallucinations, aggression and irritability were BPSD most associated with caregiver burden and depression. EE significantly mediated the BPSD-negative caregiver outcome relationship. Among EE subscales, intrusiveness was significantly more common and less associated with negative caregiver outcomes. Caregiving hours, low family support, and religious nonaffiliation were associated with EE and poorer caregiver outcomes. Conclusions: The negative impact of BPSD on dementia caregivers in Hong Kong is influenced by EE. Higher scores on EE intrusiveness may be partly accounted for by filial piety, a strong sense of family responsibility characterized by high attentiveness to elderly family members. As EE is a potentially modifiable factor, interventions are considered.

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Comprehensive Family Caregiver Support and Caregiver Well-Being: Preliminary Evidence From a Pre-post-survey Study With a Non-equivalent Control Group

Introduction: In May 2010, the Caregivers and Veterans Omnibus Health Services Act of 2010, was signed into law in the United States, establishing the Program of Comprehensive Assistance for Family Caregivers (PCAFC) provided through the VA Caregiver Support Program (CSP). Prior to this program, over half of family caregivers reported being untrained for the tasks they needed to provide. The training through PCAFC represents the largest effort to train family caregivers in the U.S., and the features of the program, specifically a monthly stipend to caregivers and access to a Caregiver Support Coordinator at each VA medical center nationally, make it the most comprehensive caregiver support program ever enacted in the U.S. Methods: The purpose of this study is to examine the association between PCAFC participation and caregiver well-being following enrollment, comparing participating PCAFC caregivers to caregivers who applied to but were not approved for PCAFC participation (non-participants). Well-being is defined using three diverse but related outcomes: depressive symptoms, perceived financial strain, and perceived quality of the Veteran's health care. Additional well-being measures also examined include the Zarit Burden Inventory and positive aspects of caregiving. Results: The survey sample comprised of 92 caregivers approved for PCAFC and 66 caregivers not approved. The mean age of responding caregivers was 45; over 90% of caregivers were female; and over 80% of caregivers were married in both groups. We find promising trends in well-being associated with PCAFC participation. First, the perception of financial strain declined among participants compared to non-participants. Second, while depressive symptoms did not improve for the PCAFC caregivers, depressive symptoms increased among non-participants. Third, perceived quality of the Veteran's VA healthcare was no different between participants and non-participants. However, the 158 returned surveys reflect only a 5% response rate; hence this evidence is preliminary. Conclusion: Despite cautioning that results be interpreted as preliminary, this study provides unique descriptive information about young caregivers of U.S. post-9/11 Veterans, and offers a first step in filling the evidence gap about how comprehensive caregiver support in the U.S. may affect caregiver well-being. These preliminary findings should be explored and validated in a larger sample.

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The Influence of Social Support and Care Burden on Depression among Caregivers of Patients with Severe Mental Illness in Rural Areas of Sichuan, China

Depression is one of the most common psychological consequences of caregiving. Caring for patients with severe mental illness (SMI) adds significant challenges to family caregivers' mental health. The purpose of this study was to describe the prevalence of depression among caregivers of SMI patients in rural areas of Sichuan province of China, to examine the influence of social support and care burden on depression, and to explore the intermediary effect of care burden between social support and depression among caregivers of SMI patients. Data were collected from 256 primary caregivers of SMI patients in rural Sichuan Province in China. We used structural equation modeling (SEM) to test the hypothesized relationship among the variables. We found that a total of 53.5% of caregivers had depression. Both care burden (β = 0.599, 95%CI: 0.392-0.776) and social support (β = -0.307, 95%CI: (-0.494)-(-0.115)) were directly related to depression, while social support had a direct association with care burden (β = -0.506, 95%CI: (-0.672)-(-0.341)). Care burden mediated the relationship between social support and depression. For the socio-demographic variables, gender, education level and per capita annual income of household had significant correlations with depression (p < 0.05). The results strongly demonstrated that social support and care burden were predictors of depression, especially social support. Policymakers should fully recognize the role of primary family caregivers in caring for SMI patients and promote interventions to decrease care burden and reduce caregivers' depression by improving social support and network. More attention should be given to female caregivers and caregivers with lower education and lower household income levels.

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Pilot Study of a Transitional Intervention for Family Caregivers of Older Adults

Objective : To conduct a formative evaluation of a transitional intervention for family caregivers, with assessment of feasibility, acceptability, appropriateness, and potential benefits. Methods : The intervention aimed to provide emotional support, information on community resources, and information and support for development of coping skills for the caregivers of patients aged 65 and older who were to be discharged home from an acute medical hospital admission. We used a one-group, pre- and three-month post-test study design. Results: Ninety-one patient-caregiver dyads were recruited. Of these, 63 caregivers (69%) received all five planned intervention sessions, while 60 (66%) completed the post-test. There were significant reductions in caregiver anxiety and depression following the intervention, and high rates of satisfaction. Discussion: This transitional intervention should be further evaluated, preferably with a control group, either as a stand-alone intervention or as one component of a comprehensive transitional intervention for older patients and their caregivers.

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Gender Differences in Longitudinal Associations Between Intimate Care, Resiliency, and Depression Among Informal Caregivers of Patients Surviving the Neuroscience Intensive Care Unit

Background/Objective: Informal caregivers (e.g., family and friends) are at risk for developing depression, which can be detrimental to both caregiver and patient functioning. Initial evidence suggests that resiliency may reduce the risk of depression. However, gender differences in associations between multiple psychosocial resiliency factors and depression have not been examined among neuroscience intensive care unit (neuro-ICU) caregivers. We explored interactions between caregiver gender and baseline resiliency factors on depression symptom severity at baseline through 3 and 6 months post-discharge. Methods: Caregivers (N = 96) of neuro-ICU patients able to provide informed consent to participate in research were enrolled as part of a prospective, longitudinal study in the neuro-ICU of a major academic medical center. Caregiver sociodemographics and resiliency factors (coping, mindfulness, self-efficacy, intimate care, and preparedness for caregiving) were assessed during the patient’s hospitalization (i.e., baseline). Levels of depressive symptoms were measured using the Hospital Anxiety and Depression Scale at baseline, 3 months, and 6 months post-discharge. Results: Baseline depressive symptoms predicted depressive symptoms at both 3- and 6-month follow-ups, with no difference at any time point in rates of depression by gender. At baseline, greater levels of coping, mindfulness, and preparedness for caregiving were individually associated with lower levels of concurrent depression regardless of gender (ps < 0.006). The main effect of baseline coping remained significant at 3-month follow-up (p = 0.045). We observed a trend-level interaction between gender and baseline intimate care, such that among male caregivers only, high baseline intimate care was associated with lower depression at 3-month follow-up (p = 0.055). At 6-month follow-up, we observed a significant interaction between caregiver gender and baseline intimate care, such that male caregivers reporting high intimate care reported lower symptoms of depression than females reporting high intimate care (p = 0.037). Conclusions: Results support implementation of psychosocial resiliency interventions for caregivers of patients admitted to the neuro-ICU early in the recovery process. Male caregivers may particularly benefit from strategies focused on increasing intimate care (e.g., physical and emotional affection with their loved one) and quality of the patient-caregiver dyadic relationship.

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Dispositional mindfulness, self‐compassion, and compassion from others as moderators between stress and depression in caregivers of patients with lung cancer

Objective: The present study aimed to identify the most important protective factors predicting caregivers' depressive symptoms among factors of caregivers' dispositional mindfulness, self‐compassion, compassion from others, and patients' dispositional mindfulness and their moderator effects on the relationship between caregiving stress and depressive symptoms. Methods: A total of 72 lung cancer outpatients and their family caregivers participated in this study. Family caregivers completed the Kingston Caregiver Stress Scale, Beck Depression Inventory‐II (BDI‐II), Five Facet Mindfulness Questionnaire (FFMQ), Self‐Compassion Scale, and Compassion from Others Scale. Patients completed the EORTC Quality of Life Questionnaire Core 30 (EORTC QLQ‐C30), BDI‐II, and FFMQ. Results: After controlling for patients' factors (treatment status, symptom distress, and depressive symptoms) and caregivers' health status, caregivers' stress and dispositional mindfulness, the domain of mindful awareness, and self‐compassionate action were significantly associated with their depressive symptoms. Further analysis indicated that mindful awareness or self‐compassionate action could buffer the effect of caregiving stress on depressive symptoms. When the two moderators, mindful awareness and self‐compassionate action, were tested simultaneously, only self‐compassionate action remained as a significant moderating effect. Conclusions: Caregivers' mindful awareness and self‐compassionate action were protective factors, which mitigate the impact of caregiving stress on their depressive symptoms. Therefore, the future supportive program aims at training the competencies of self‐compassionate action with mindful awareness, which may enhance caregivers' coping resources

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Associations between Predeath and Postdeath Grief in Family Caregivers in Palliative Home Care

Background: Family caregivers in palliative care may be placed in a complicated emotional situation wherein they suffer the risk of grief reactions both pre- and postbereavement and may also experience symptoms of anxiety and depression. Objective: The aim of this study was to investigate (1) associations between predeath grief and postdeath grief and (2) whether these are moderated by symptoms of anxiety and depression. Design: This was a prospective correlational study. Linear regression analysis in three blocks was used to investigate associations between pre- and postdeath grief and moderation effects of anxiety and depression. Postdeath grief was used as the outcome variable and predeath grief was used as the explanatory variable in block I. The moderator variables, symptoms of anxiety, and symptoms of depression were added as covariates in block II. A multiplicative interaction term between predeath grief and anxiety/depression was added to the model in block III. Setting/Subjects: Data were collected at 10 facilities specialized in palliative home care where health care professionals provided advanced care to patients with various diagnoses in their own homes. Measurements: The anticipatory grief scale and the Texas Revised Inventory of Grief were used to measure pre- and postdeath grief, respectively. To measure symptoms of anxiety and depression, the Hospital Anxiety and Depression scale was used. Results: A total of 128 family caregivers were included. Significant associations were found between predeath grief and postdeath grief and this association remained when controlled against symptoms of anxiety or depression. We found no moderation effect of anxiety or depression on the association between pre- and postdeath grief. Conclusions: In conclusion, grief before and after an expected death can be regarded as parts of the same grief process. Hence, knowing the intensity of predeath grief could be a way to predict the levels of postdeath grief.

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Depression in partner caregivers of people with neurological conditions; associations with self-compassion and quality of life

Objectives: Informal caregivers are vulnerable to poor mental health and quality of life (QoL). Self-compassion may protect against this. This study investigated depression and QoL in partner caregivers of people with a long-term or neurological condition (e.g. dementia or spinal cord injury) and explored the extent to which QoL and self-compassion are predictive of depression. Design: A cross-sectional, questionnaire design. Methods: Participants were recruited from charities and support groups. Partner caregivers (N = 57) completed assessments of depression, QoL, and self-compassion. Results: Over half (61.8%) of caregivers experienced at least mild symptoms of depression, illustrating high prevalence among caregivers compared with the general population. Overall QoL was poor compared with non-caregivers. QoL was poorest in the physical domain (M = 51.9, SD = 10.1) and highest in the environmental domain (M = 64.9, SD = 15.8). Both self-compassion and QoL were significant predictors of depression (p < 0.05), explaining 48.8% of the variance. Hours spent providing care was also significantly predictive of depression (p < 0.05). Conclusion: Self-compassion and QoL may be important targets for supportive interventions for this population. This study underscores the importance of developing supportive interventions for informal partner caregivers, and developing self-compassion in these.

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Factors Associated with Anxiety and Depression among Family Caregivers of Patients Undergoing Palliative Radiotherapy

Objective: The family caregivers of patients receiving palliative care experience high levels of anxiety and depression. The aim of the present study was to investigate the factors associated with family caregivers' anxiety and depression when caring for patients with advanced cancer in Greece.; Methods: The sample consisted of 100 patients undergoing palliative radiotherapy and their respective caregivers. Patients completed the Hospital Anxiety and Depression Scale (HADS) and the MD Anderson Symptom Inventory. Their respective caregivers completed the Oberst Caregiving Burden Scale, the Bakas Caregiving Outcomes Scale, and the HADS. Correlational and multiple regression analyses were conducted to identify potential predictors of anxiety and depression.; Results: The majority of patients were male (63.0%), whereas the majority of their caregivers were female (76.0%). The mean ages of patients and caregivers were 63.9 ± 10.8 and 53.3 ± 12.6 years, respectively. Caregiving anxiety and depression were associated with patients' variables, such as gender (P < 0.0005), primary cancer (P = 0.008), and past surgery (P = 0.002), and caregiver's variables, such as gender (P = 0.001), co-residence (P = 0.05), previous care experience (P = 0.04), and means of transport (P = 0.038). In multiple regression analyses, caregiving anxiety and depression were significantly predicted by caregivers' and patients' characteristics, in a model that accounted for 48% of the anxiety variance (P < 0.0005) and 39% of the depression variance (P < 0.0005).; Conclusion: The caregivers who experienced more anxiety and depression shared the following traits: they were women, cared for men with lung cancer, cared for patients not undergoing surgery, lived together, were younger, went to the hospital by private means of transport, had previous care experience, and perceived an increased degree of general burden. Further investigation of the factors that may affect caregivers' psychological state is required to better identify parameters that may predict it.

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Association of physical and psychological health status between chronic obstructive pulmonary disease patients and their family caregivers

We performed this cross-sectional study with 72 chronic obstructive pulmonary disease (COPD) patients and their family caregivers to analyze relationship of physical and psychological health status between COPD patients and caregivers. Most caregivers were female (100%). Caregiver depression and burden were significantly associated with caregiving hours. In path analysis, the higher the patient's social support, the higher the patient's self-efficacy. The higher the patient's self-efficacy, the lower the care burden of the caregiver. Based on our results, there was a significant correlation of physical and psychological factors between patients and family caregivers.

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Dementia caregiver interventions in Chinese people: A systematic review

Aims: The aim of this systematic review was to examine the characteristics and the efficacy of dementia caregiving interventions among the Chinese population. Background: In recent years, an increasing number of dementia caregiving interventions have been developed for Chinese older adults living in Asia that aim to reduce caregivers' burden, depression and distress, and enhance quality of life. Little is known, however, on the nature and the efficacy of these interventions. Design: Systematic review with narrative summary. Data sources: We searched four databases for studies published in English between 1 January 1994–30 December 2017. Nineteen studies reported in 23 articles were included in the final analysis. Review methods: We used a set of criteria from the Cochrane Collaboration tool to assess for the risk of bias across studies. Results: We found that interventions varied in length, frequency, approach, and content, making comparisons across studies challenging. Caregivers' burden, depression, and distress were improved among most included studies. All studies that examined quality of life of caregivers (N = 6) showed improvement. Most of the interventions showed beneficial effects on care recipients' behavioural symptoms, agitation, and depression; cognitive function, however, failed to improve. Conclusion: Although the review found mixed results on intervention outcomes, the majority of interventions showed a potential to improve the health and well‐being of dementia caregivers and care recipients. This review provides suggestions for future dementia caregiving research in the Chinese population, such as inclusion of relevant theoretical frameworks and more rigorous research designs

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Family Caregivers' Subjective Caregiving Burden, Quality of Life, and Depressive Symptoms Are Associated With Terminally Ill Cancer Patients' Distinct Patterns of Conjoint Symptom Distress and Functional Impairment in Their Last Six Months of Life

Context: Family caregivers constitute a critical component of the end-of-life care system with considerable cost to themselves. However, the joint association of terminally ill cancer patients' symptom distress and functional impairment with caregivers' subjective caregiving burden, quality of life (QOL), and depressive symptoms remains unknown. Objectives/methods: We used multivariate hierarchical linear modeling to simultaneously evaluate associations between five distinct patterns of conjoint symptom distress and functional impairment (symptom-functional states) and subjective caregiving burden, QOL, and depressive symptoms in a convenience sample of 215 family caregiver-patient dyads. Data were collected every 2 to 4 weeks over patients' last 6 months. Results: Caregivers of patients in the worst symptom-functional states (States 3-5) reported worse subjective caregiving burden and depressive symptoms than those in the best two states, but the three outcomes did not differ between caregivers of patients in State 3 and States 4-5. Caregivers of patients in State 5 endured worse subjective caregiving burden and QOL than those in State 4. Caregivers of patients in State 4 suffered worse subjective caregiving burden and depressive symptoms but comparable QOL to those in State 2. Conclusion: Patients' five distinct, conjoint symptom-functional states were significantly and differentially associated with their caregivers' worse subjective caregiving burden, QOL, and depressive symptoms while caring for patients over their last 6 months.

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The influence of attachment style and relationship quality on quality of life and psychological distress in carers of people with epileptic and nonepileptic seizures

Seizure disorders affect not only the individual living with seizures, but also those caring for them. Carer–patient relationships may be influenced by, and have an influence on, some aspects of living with seizure disorders — with potentially different interactions seen in epilepsy and psychogenic nonepileptic seizures (PNES). We studied the influence of patient and carer attachment style and relationship quality on carer wellbeing and psychological distress, and explored whether these associations differ between carers for people with epilepsy and for those with PNES. Consecutive adult patients with epilepsy (N = 66) and PNES (N = 16) and their primary informal carers completed questionnaires about relationship quality, attachment style, and psychopathological symptom burden. We used correlation analysis to identify associations between relationship quality, attachment style, and carer depression, anxiety, and wellbeing; and to explore differences in these associations between carers for people with epilepsy and for those with PNES. Overall, 25.3% of carers for people with epilepsy or PNES had scores above the clinical cutoff for depression and 39.6% for anxiety; significantly more carers for people with PNES reported clinically significant depression (47.1% vs. 20.0%), but there was no difference in anxiety rates likely to be of clinical relevance. Correlations differed significantly between carers for people with epilepsy and for those with PNES in terms of patient quality of life and carer anxiety (r E = − 0.577, r PNES = − 0.025); seizure severity and carer depression (r E = 0.248, r PNES = − 0.333) and mental wellbeing (r E = − 0.356, r PNES = 0.264); patient depression and carer anxiety (r E = 0.387, r PNES = − 0.266); and patient anxious attachment and carer anxiety (r E = 0.382, r PNES = 0.155). Clinically evident levels of psychological distress are prevalent among carers for people with epilepsy and PNES. Clinical and relationship variables affect carer quality of life differently depending on whether care is provided for individuals with epilepsy or PNES. • Carers for people with seizure disorders experience high levels of depression and anxiety. • Mental wellbeing in this group correlates with relationship conflict, and patient and carer attachment styles. • These associations differ between carers for people with epilepsy and for those with psychogenic non-epileptic seizures. 

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Factors influencing caregiver burden in families of hospitalised patients with lung cancer

Aims and Objectives: To investigate the factors influencing caregiver burden in families of hospitalised lung cancer patients.; Background: Even though cancer symptoms among hospitalised lung cancer patients are serious and negatively affect caregivers, few research regarding to the factors of caregiver burden in hospitalised lung cancer patient has been carried out.; Design: Cross-sectional, descriptive and correlational study.; Methods: A convenience sample of hospitalised lung cancer patients (n = 107) was recruited from K University hospital in South Korea. Family depression, social support and caregiver burden as well as patients' lung cancer symptoms were measured using peer-reviewed and standard measurement tools. Descriptive statistics and parametric tests including stepwise regression were used to analyse the data. The STROBE guideline has been used to report this study.; Results: Caregiver burden among the families of hospitalised lung cancer patients was high; the regression model for caregiver burden among participants' families was significant. Depression among families was found to be the most influential factor for caregiver burden, followed by patients' lung cancer symptoms.; Conclusions: This study revealed that family caregivers' depression and patients' lung cancer symptoms were the most significant factors for families' caregiver burden. Future research should be conducted to identify the causes of depression among families of hospitalised lung cancer patients and develop management programmes to address such causes. It is also necessary to investigate the causes of increased caregiver burden that differentiate families of lung cancer patients from other cancer patients and provide education to help such families understand such causes.; Relevance To Clinical Practice: Findings from this study show that family's depression and lung cancer symptoms were significant factors for caregivers' burden. Hence, it is suggested for the healthcare providers to find for the best solution/strategies to reduce the caregiver's burden.

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Illness perceptions, depression and anxiety in informal carers of persons with depression: a cross-sectional survey

Purpose: To examine the illness perceptions of informal carers of persons with depression, using the theoretical framework of Leventhal's Common-Sense Model (CSM) and to determine whether these illness perceptions are predictors of anxiety and depression, as measures of psychological well-being. Methods: A cross-sectional survey was conducted with 94 Maltese individuals caring for a person with depression within a community setting. The informal carers completed the modified Illness Perception Questionnaire (IPQS-Relatives version) and the Hospital Anxiety and Depression Scale (HADS). Data were analysed using descriptive statistics, Spearman's rank order correlations and ANCOVA regression models, to identify predictors of anxiety and depression respectively in the informal carers. Results: The informal carers perceived depression as a cyclical condition, having negative consequences on both the patient and on themselves. Participants perceived the causes of depression to be mainly psychosocial in nature and generally viewed the treatment as effective. Caring for a person with depression was perceived as having a considerable negative emotional impact on them. Years of caring was identified as a predictor of anxiety accounting for 20.4% of the variance, and timeline chronicity beliefs, consequences (relative) and illness coherence were identified as predictors of depression, accounting for 56.8% of the variance. Conclusion: Illness cognitions are significant predictors of depression, thereby suggesting that cognition-based interventions may be effective in targeting depression in these informal carers. Thus, health professionals should explore the carers' personal understanding of the disease, their timeline beliefs and the perceived consequences of providing care, as they relate to their psychological well-being.

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The relationship between perceived social support and depressive symptoms in informal caregivers of community-dwelling older persons in Chile

Aim: Depression among caregivers of older persons is a serious concern, but it is often overlooked and neglected in developing countries. The aim of this study was to examine the relationship between perceived social support and depression in informal caregivers of community-dwelling older persons in Chile.; Methods: We analyzed cross-sectional secondary data on 377 dyads of community-dwelling older persons and their informal caregivers from a nationwide survey in Chile. The Duke-UNC Functional Social Support Questionnaire (FSSQ) was used to measure caregivers' perceived social support, and the Center for Epidemiologic Studies Depression Scale assessed their depression.; Results: In this study, 76.9% of the caregivers perceived a high level of social support, and 46.9% were assessed as having depression. Based on multivariable analysis, factors that decrease the likelihood of being depressed are a high level of social support (odds ratio (OR) = 0.311, 95% confidence interval (CI): 0.167-0.579) and having taken holidays in the past 12 months (OR = 0.513, 95%CI: 0.270-0.975). Factors that increase the likelihood of being depressed are being a female caregiver (OR = 2.296, 95%CI: 1.119-4.707), being uninsured (OR = 4.321, 95%CI: 1.750-10.672), being the partner or spouse of the care recipient (OR = 3.832, 95%CI: 1.546-9.493), and the number of hours of care (OR = 1.053, 95%CI: 1.021-1.085).; Conclusion: Higher levels of perceived social support and holidays were associated with lower levels of depression. However, being female, being the care recipient's partner or spouse, being uninsured, and having long care periods had detrimental effects. Interventions to preserve and enhance perceived social support could help improve depressive symptoms in informal caregivers. Additionally, support should be available to caregivers who are women, uninsured, and the care recipient's partner or spouse, as well as those who provide care for long hours, to ensure they have respite from their caregiving role.

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Evaluation of the perceived health of caregivers of patients in mild‐to‐moderate stage Alzheimer's disease

Purpose: To know the health perceived by the family caregivers of Alzheimer's disease, according to the relationship of kinship and the duration of the care in mild‐to‐moderate stage of dementia. Design and Methods: Cross‐sectional descriptive study in 255 caregivers. The instruments used were an ad hoc questionnaire and the Goldberg General Health Questionnaire (GHQ‐28). Findings: The presence of acute and chronic mental pathology has been observed. Specifically in the spouses and children, severe depression and social dysfunction, and in periods of care between 2 and 5 years, mainly anxiety and insomnia have been observed. Practice Implications: The relationship of kinship and the duration of care must be taken into account in the planning of specific interventions in these caregivers. 

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Stroke survivor cognitive decline and psychological wellbeing of family caregivers five years post-stroke: a cross-sectional analysis

Background: Family members frequently provide long-term care for stroke survivors, which can lead to psychological strain, particularly in the presence of cognitive decline.; Objectives: To profile anxious and depressive symptoms of family caregivers at 5 years post-stroke, and to explore associations with stroke survivor cognitive decline.; Methods: As part of a 5-year follow-up of the Action on Secondary Prevention Interventions and Rehabilitation in Stroke (ASPIRE-S) cohort of stroke survivors, family members completed a self-report questionnaire. Symptoms of anxiety and depression were assessed using the HADS-A and CES-D. Cognitive decline in stroke survivors was assessed from the caregiver's perspective using the IQCODE, with cognitive performance assessed by the MoCA. Data were analyzed using logistic regression models.; Results: 78 family members participated; 25.5% exhibited depressive symptoms, 19.4% had symptoms of anxiety. Eleven stroke survivors (16.7%) had evidence of cognitive decline according to both the IQCODE and MoCA. Family members of stroke survivors with cognitive decline were significantly more likely to report symptoms of depression [age-adjusted OR (95% CI): 5.94 (1.14, 30.89)] or anxiety [age-adjusted OR (95% CI): 5.64 (1.24, 25.54)] than family members of stroke survivors without cognitive decline.; Conclusions: One-fifth of family caregivers exhibited symptoms of anxiety and one-quarter symptoms of depression at 5 years post-stroke. Stroke survivor cognitive decline was significantly associated with both depressive and anxious symptoms of family caregivers. Family members play a key role in the care and rehabilitation of stroke patients; enhancing their psychological wellbeing and identifying unmet needs are essential to improving outcomes for stroke survivors and families.

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Correlates of anxiety and depression symptoms among patients and their family caregivers prior to allogeneic hematopoietic cell transplant for hematological malignancies

Purpose: Given the complexities and risks of allogeneic HCT, patients and their family caregivers may experience elevated psychological distress, including symptoms of anxiety and depression, in anticipation of the procedure. Patients and caregivers also bring with them their pre-HCT experiences of diagnosis, prior treatment, and associated burdens, thus potentially compounding their acute distress. Identification of clinical, psychosocial, and sociodemographic factors related to pre-HCT distress would allow targeting of patients and caregivers who may require assistance during the HCT process. Methods: Consecutive patients (n = 111) and their caregivers (n = 110) completed measures of anxiety, depression, cancer distress, perceived threat, perceived control, self-efficacy, relationship quality, and physical quality of life in the week before HCT. Multivariate linear regression analysis was used to identify factors associated with patient and caregiver anxiety or depression, including disease type, donor type, and patient and caregiver sociodemographic, health-related, and psychosocial factors. Results: Family caregivers had higher levels of anxiety and depression symptoms than patients. Thirty percent of caregivers vs. 17% of patients met criteria for clinically significant anxiety and a lesser amount (5% for both) met criteria for clinically significant depression. Patient anxiety was related to younger age (b = - 0.22, p = 0.005) and greater cancer-related distress (b = 0.59, p < 0.001), while caregiver anxiety was related to lower self-efficacy (b = - 0.19, p = 0.011) and greater cancer-related distress (b = 0.58, p < 0.001). Similarly, patient depression was related to lower perceived control (b = - 0.17, p = 0.050), greater cancer-related distress (b = 0.34, p = 0.005), and lower physical functioning (b = - 0.26, p = 0.008), while caregiver depression was related to greater cancer-related distress (b = 0.46, p < 0.001). Conclusions: Family caregivers may be more emotionally vulnerable than patients before HCT and in need of additional assistance. Cancer-related distress was the strongest correlate of anxiety and depression in both patients and caregivers, suggesting that distress related to their cancer experience and its consequences plays a major role in their emotional functioning prior to HCT.

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Quality of Life and Emotional Strain in Caregivers of Patients with Multiple Sclerosis

Background and Purpose: This study aimed was to measure the quality of life, fatigue, stress, and depression in a consecutive sample of caregivers of multiple sclerosis (MS) patients.; Methods: We included data from 131 consecutive caregivers of MS patients [age=51.2±12.8 years (mean±SD), males=53.4%, duration of caregiving=10.0±6.3 years]. We assessed the quality of life, fatigue, stress, and depression of the caregivers using the 36-item Short Form Health Survey, Krupp Fatigue Severity Scale, Kingston Caregiver Stress Scale, and Hamilton Scale for Depression, respectively. The disability status of the patients was assessed using the Kurtzke Expanded Disability Status Scale. We used linear regression models to identify possible correlations between all of the aforementioned scales, while multivariable logistic regression models were employed to assess the correlations of caregiver fatigue with caregiver characteristics and patient disability.; Results: The linear regression analyses revealed that caregiver fatigue was positively associated with stress and negatively correlated with both physical health status and mental health status. Caregiver stress was positively associated with depression and negatively correlated with both physical health status and mental health status. Depression was negatively correlated with both caregiver physical health status and mental health status. In multivariable logistic regression analysis, caregiver fatigue was found to be independently associated with education status [odds ratio (OR)=0.61, 95% CI=0.37 to 0.99], history of chronic disease (OR=5.52, 95% CI=1.48 to 20.55), other chronic diseases in the family (OR=7.48, 95% CI=1.49 to 37.47), and the disability status of the patient (OR=1.36, 95% CI=1.03 to 1.80).; Conclusions: Fatigue, stress, and depression in caregivers of MS patients are negatively correlated with their physical health status and mental health status. Caregiver fatigue is independently associated with education status, history of chronic disease, other chronic disease in the family, and patient disability.

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Self-efficacy and social support for psychological well-being of family caregivers of care recipients with dementia with Lewy bodies, Parkinson's disease dementia, or Alzheimer's disease

The study identified factors associated with depressive symptoms in family caregivers of persons with dementia with Lewy bodies, Alzheimer's disease, or Parkinson's disease dementia. An Internet-based survey generated 606 response sets. Regression analysis indicated that care recipients' memory and behavioral problems, caregivers' self-efficacy, grief, and tangible, emotional, and affectionate support were significantly associated with caregivers' depressive symptoms. Self-efficacy mediated caregiver burden to improve psychological well-being. Social support mediated the association between caregiver grief and psychological well-being. Social workers can provide psychoeducational interventions to help caregivers to manage emotional distress and improve capacity to manage tasks related to the dementia.

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Invisible partners in care: Snapshot of well-being among caregivers receiving comprehensive support from Veterans Affairs

Background and aims: Since May 2011, over 23 000 caregivers of Veterans seriously injured on or after September 11, 2001 have enrolled in the Program of Comprehensive Assistance for Family Caregivers (PCAFC). PCAFC provides caregivers training, a stipend, and access to health care. The aim of this study is to describe the characteristics of caregivers in PCAFC and examine associations between caregiver characteristics and caregiver well-being outcomes.; Methods: We sent a web survey invitation to 10 000 PCAFC caregivers enrolled as of September 2015. Using linear and logistic regressions, we examine associations between PCAFC caregiver characteristics and caregiver outcomes: perceived financial strain, depressive symptoms (Center for Epidemiologic Studies Depression Scale [CESD-10]), perceived quality of Veteran's Veterans Health Administration (VHA) care, and self-reported caregiver health.; Results: We had complete survey data for 899 respondents. Since becoming a caregiver, approximately 50% of respondents reported reducing or stopping work. Mean time spent providing care was 3.8 years (median 3, IQR 1-5) with an average of 4.9 weekdays (median 5, IQR 5-5) and 1.9 weekend days (median 2, IQR 2-2). The mean CESD-10 score was 8.2 (median 7, 4-12), at the cutoff for screening positive for depressive symptoms. A longer duration of caregiving was associated with having 0.08 increase in rating of financial strain (95% CI, 0.02-0.14). Caregiver rating of the Veteran's health status as "fair" or better was a strong predictor of better caregiver outcomes, ie, self-reported caregiver health. However, higher levels of education were associated with worse caregiver outcomes, ie, lower global satisfaction with VHA care, higher CESD-10 score, and higher rating of financial strain.; Conclusions: Higher depressive symptoms among longer duration caregivers, coupled with high rates of reductions in hours worked, suggest interventions are needed to address the long-term emotional and financial needs of these caregivers of post-9/11 Veterans and identify subpopulations at risk for worse outcomes.

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Geographical proximity and depressive symptoms among adult child caregivers: social support as a moderator

Objectives: This study examined whether geographical proximity is a predictor of depressive symptoms, and whether family and friend support can moderate the relationship between geographical proximity and depressive symptoms. Method: A survey of 557 adult child primary caregivers was conducted in Shanghai, China in 2013. Geographical proximity was measured as a categorical variable: coresidence, short distance (less than 30 minutes' travel time), and long distance (more than 30 minutes' travel time). Family and friend support were assessed using the Multidimensional Scale of Perceived Social Support. Depressive symptoms were evaluated using the Center on Epidemiologic Studies Depression Scale. Multiple regression analyses and interaction terms were used to test the moderating roles of family and friend support. Results: Adult child caregivers who live more than 30 minutes away from care recipients experienced higher depressive symptoms than coresiding caregivers (β =.114, p <.01). Family support (β = −.408, p <.05) and friend support (β = −.235, p <.05) were protective factors that lessened depressive symptoms for long-distance adult child caregivers. Conclusion: This study adds spatial dimension to caregiving literature and extends stress process theory. These findings have important implications for service planning and social support for adult child caregivers.

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Resilience in Carers of People With Young-Onset Alzheimer Disease

Young-onset Alzheimer disease (YOAD) causes psychological and emotional difficulties for carers. However, even in the face of considerable caregiving demands and burden, some carers are resistant to stress, which may be a sign of resilience. This study investigated whether the clinical symptoms of the person with YOAD might be associated with resilience in their carers. A consecutive series of 43 persons with YOAD and their 43 family caregivers were assessed. The carers showed moderate to high level of resilience, low level of anxiety and depressive symptoms, and moderate level of burden. No relationship was found between resilience and sociodemographic characteristics of both carers and care recipient and with clinical characteristics of persons with YOAD. A linear regression analysis showed that resilience was inversely associated with carers' depressive symptoms. The findings suggest that resilience may mainly be related to carers' mental health. 

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Empathy in informal dementia caregivers and its relationship with depression, anxiety, and burden

Background/Objective: Recent interventions aim to heighten informal caregivers' empathy levels assuming that this will lead to better well-being. However, previous studies have explored linear associations between empathy and aspects of well-being and yielded mixed results. We hypothesized that quadratic models may be more fitting to describe these relationships. Method: A cross-sectional study, with two groups (201 informal caregivers, and 187 non-caregivers) was conducted. Participants completed questionnaires on cognitive and affective empathy, and depression, anxiety, and caregiver burden. AN(C)OVA's and multiple hierarchical regression analyses including linear and quadratic terms were used to analyze the data. Results: For caregivers, there was a negative quadratic relationship between depression and cognitive empathy, and a positive linear relationship between anxiety and affective empathy, irrespective of sociodemographic characteristics. For non-caregivers, there were positive quadratic relationships between depression and cognitive and affective empathy, and between anxiety and affective empathy. The empathy levels did not differ between the groups. Conclusions: While caregivers and non-caregivers had the same amount of empathy, the relationships between empathy and depression and anxiety differed between the groups. Interventions for informal caregivers could aim to heighten cognitive empathy and to lower affective empathy to diminish depression and anxiety symptoms. 

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Variations in grief, anxiety, depression, and health among family caregivers before and after the death of a close person in the context of palliative home care

This article investigates longitudinal variations in grief, self-rated health, and symptoms of anxiety and depression among family caregivers in palliative care. Data were taken from a randomized psycho-educational intervention trial and were collected at four time-points; at baseline, upon completion, 2 months later, and 6 months after the patient's death. In total, 117 family caregivers completed all questionnaires. The participants' grief was stable across the measurements, while anxiety, depression, and health varied significantly (p < 0.05). No significant differences were found between the intervention or control group. In conclusion, grief emerged as a constant phenomenon, distinct from symptoms of anxiety and depression.

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Efficacy of Internet-Delivered Mindfulness for Improving Depression in Caregivers of People With Spinal Cord Injuries and Chronic Neuropathic Pain: A Randomized Controlled Feasibility Trial

Objectives: To explore the feasibility and efficacy of web-based mindfulness training for carers of people with spinal cord injury (SCI).; Design: Randomized controlled feasibility study with 3-month follow-up.; Setting: Community setting.; Participants: Spouses or family caregivers (N=55) of people with SCI and chronic neuropathic pain were recruited via the direct care team and advertisements. Participants were older than 18 years (no upper age limit), with Internet access for the duration of the study. Participants were randomly allocated to an 8-week online mindfulness training intervention (n=28), or to receive 8 weeks of psychoeducational materials on SCI and chronic pain (n=27).; Interventions: An established web-based, mindfulness training course was delivered over 8 weeks. Participants completed 10 minutes of mindfulness practices, twice per day, 6 days per week, totaling 960 minutes. The control group received a weekly e-mail with psychoeducational materials (based on the established elements) on SCI and pain for 8 weeks.; Main Outcome Measure: Depression severity.; Results: Mindfulness reduced depression severity more than psychoeducation at T2 (mean difference= -.891; 95% confidence interval,-1.48 to -.30) and T3 (mean difference=-1.96; 95% confidence interval, -2.94 to -.97). Mindfulness training also reduced anxiety at T2 (mean difference=-.888; 95% confidence interval, -1.40 to -.38) and T3 (mean difference=-2.44; 95% confidence interval, -3.20 to -1.69).; Conclusions: Results indicate that Internet-delivered mindfulness training offers unique benefits and is viable for caregivers of people with SCI and chronic neuropathic pain. Further work should explore the feasibility of combined education and mindfulness training incorporating both patient and caregiver, for optimum benefit.

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Hospice Bereavement Service Delivery to Family Members and Friends With Bereavement-Related Mental Health Symptoms

Objectives: A sizable minority of those who lose a loved one in hospice will experience symptoms of bereavement-related mental health disorders. Though hospices offer services to bereaved informal caregivers (family members or friends) of patients, little is known about services offered or interest in them. Therefore, we sought to assess services offered by hospice staff and interest expressed by bereaved informal caregivers with symptoms of depression, anxiety, or complicated grief (CG).; Methods: De-identified electronic bereavement care charts of 3561 informal caregivers who lost someone in a large urban metropolitan hospice from October 1, 2015, to June 30, 2016, were reviewed.; Results: Of bereaved informal caregivers in the sample, 9.4% (n = 333) were positive for symptoms of depression, anxiety, or CG. The symptom-positive family members/friends were more likely than other family members/friends to be offered mailings, one-to-one counseling, telephone calls, and reference material. However, interest in most services by symptom-positive caregivers was low, with only 6% interested in one-to-one counseling and 7% interested in outside referral.; Discussion: The findings suggest that hospices offer a range of services to family members or friends with symptoms of anxiety, depression, and CG, but that there can be a gap between what is offered and in the interest levels of the bereaved. Engagement with symptomatic family members and friends could be enhanced in future work.

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Caregiver Burden and Quality of Life in Early and Late Stages of Idiopathic Parkinson's Disease

Objective: Idiopathic Parkinson's disease (IPD) is a chronic progressive neurodegenerative movement disorder characterized by motor and non-motor symptoms that affects patients' quality of life and caregiver burden. The aim of our study was to assess the caregiver burden (CB) in early and late stages of disease and to search if there was a relationship between quality of life and CB.; Methods: A total of 74 patients who were diagnosed as having IPD by a movement disorder neurologist according to United Kingdom Brain Bank Criteria and their caregivers were randomly selected for participation the study. Staging of PD was performed by the neurologist based on the Hoehn and Yahr (H&Y) Scale. Disease severity was determined using the Unified Parkinson's Disease Rating Scale (UPDRS). CB was evaluated using the Zarit Caregiver Burden Inventory (ZCBI). The Hospital Anxiety and Depression Scale (HADS) and the Beck Depression Inventory (BDI) were used to assess anxiety and depressive symptoms in patients with IPD and their caregivers. The Short-Form Health Survey instrument (SF-36) was used to evaluate quality of life of the patients. The Mini-Mental State Examination (MMSE) was administered to patients to evaluate gross cognitive status.; Results: Seventy-four patients (male, 58.1%) were included in the study. The mean age of patients was 66.18±8.5 and the mean duration of disease was 67.23±41.8 months. According to the H&Y scale, the patients were divided into two groups; stage I-II as early stage and stage III-V as late stage. Group 1 (H&Y I-II) consisted of 40 patients, and group 2 (H&Y III-V) comprised 34 patients. The mean duration of disease and UPDRS scores were significantly higher in group 2 (p=0.003, p=0.001, respectively). Significant differences were found in group 2 according to BDI. There were significant differences between group 1 and 2 according to SF-36 subdomains such as general health, emotional role, social functioning, pain, and mental health (p=0.019, p=0.038, p=0.005, p=0.004, p=0.014, respectively). However, there were no significant differences between these two groups concerning CB.; Conclusion: Although CB was found in 35 (47.3%) caregivers in our study, we found no significant differences between the caregivers of patients with early and late-stage IPD patients. We thought that this might be due to strong family relationships and cultural dynamics in Turkey. Burden was found to be higher in depressive patients' CGs and CGs who had depressive symptoms. It is important to recognize depressive symptoms earlier to protect the relationship between the CG and the patient because the main providers of care are family members.

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Sense of coherence, burden and mental health in caregiving: A systematic review and meta-analysis

Background: Informal caregiving is associated with a number of negative effects on carers' physical and psychological well-being. The salutogenic theory argues that sense of coherence (SOC) is an important factor in psychological adjustment to stress. The main aim of this study was to systematically review current evidence on the association between SOC, burden and mental health outcomes in informal carers. Method: A systematic search was carried out up to September 2017 in the following databases: PubMed, CINAHL (EBSCO), PsychInfo (OVID) and Scopus. Studies were included if they evaluated the relationship between sense of coherence and subjective caregiver burden and/or mental health outcomes, specifically symptoms of depression and anxiety. Meta-analyses were performed and subgroup analyses were carried out to explore if methodological factors influenced findings. Results: Thirty-five studies were included in the meta-analysis, which provided 40 independent samples with 22 independent comparisons for subjective caregiver burden, 26 for symptoms of depression and 7 for symptoms of anxiety. Higher levels of SOC were associated with lower levels of subjective caregiver burden and better mental health outcomes. Publication bias did not change the estimate of the effect. Limitations: Most of the studies included in this review were cross-sectional. Conclusions: Findings suggest that SOC is an important determinant of carer well-being and may protect carers from high levels of psychological distress and caregiver burden.

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Evaluation of Technology-Based Interventions for Informal Caregivers of Patients With Dementia-A Meta-Analysis of Randomized Controlled Trials

Objective: The aim of this study was to estimate the efficacy of technology-based interventions for informal caregivers of people with dementia (PWD). Methods: PubMed, PsycINFO, and Cochrane Library databases were searched in August 2018, with no restrictions in language or publication date. Two independent reviewers identified 33 eligible randomized controlled trials (RCTs) conducting a technology-based intervention for informal carers of PWD. Meta-analyses for the outcome measures caregiver depression and caregiver burden were conducted with subgroup analyses according to mode of delivery (telephone, computer/web-based, combined interventions). To assess methodologic quality, the Cochrane risk-of-bias assessment was rated. Results: Meta-analyses revealed a small but significant postintervention effect of technology-based interventions for caregiver depression and caregiver burden. Combined interventions showed the strongest effects. Conclusion: Technology-based interventions have the potential to support informal caregivers of PWD. Because of advantages such as high flexibility and availability, technology-based interventions provide a promising alternative compared with "traditional services," e.g., those for people living in rural areas. More high-quality RCTs for specific caregiver groups are needed.

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Brief telephone counselling is effective for caregivers who do not experience any major life events - caregiver-related outcomes of the German day-care study

Background: To date, there has been a dearth of scientifically tested, established intervention concepts focussed on supporting informal caregivers and embedded in routine health care structures. The aim of this study was to assess effects of a brief telephone intervention for caregivers of persons with cognitive impairment (PCIs) on caregivers' depressiveness and subjective burden.; Methods: A two-arm cluster-randomised controlled intervention study was carried out at 32 German day-care centres. During the six-month intervention period, informal caregivers in the intervention group (n = 205) received counselling in three phone calls focussed on stress reduction, development of self-management strategies, and how to deal with challenging behaviours. Both the control group (n = 154) and the intervention group were free to take part in any support programmes offered by the German Health Care System (TAU). Caregivers' subjective burden and depressiveness were measured with the Burden Scale for Family Caregivers - short version (BSFC-s) and the WHO-5 Well-Being Index (WHO-5). Outcomes were assessed by means of computer-assisted telephone interviews (CATIs) at baseline and at the end of the six-month intervention phase. Multiple regression analyses were used to show the influence of group allocation.; Results: After the intervention phase, group allocation was not found to significantly predict caregivers' subjective burden or depressiveness. The baseline scores (p < 0.001) were the only significant predictors of change in both outcomes. However, sensitivity analyses for caregivers who did not experience any events that they felt were major (in a negative or positive sense) during the six months (n = 271) showed that group allocation (p < 0.05) was a significant predictor of positive change in both outcomes (BSFC-s: Δ-1.3, [- 2.4, - 0.3], Cohen's d = 0.27; WHO-5: Δ1.5, [0.4, 2.7], Cohen's d = 0.26). Effect sizes were highest in the subgroup of caregivers of people with mild dementia (BSFC-s: Cohen's d = 0.43; WHO-5: Cohen's d = 0.42).; Conclusions: A "low-dose" psychoeducative telephone intervention designed to empower caregivers is effective, especially in an early stage, if the overlap between the effect of the intervention and the effect of events that are experienced as major events in the caregiver's life is considered.; Trial Registration: Identifier: ISRCTN16412551 (Registration date: 30 July 2014, registered retrospectively).

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Validity and reliability of the Turkish version of caregiver self-assessment questionnaire

Objective: This study aims to translate the Caregiver Self-Assessment Questionnaire (CSAQ) into Turkish language and to test its reliability and validity in Turkish informal family caregivers.; Materials and Methods: This is a cross-sectional and methodological study. Eighty family caregivers (54.53 ± 12.07 years; range 25 to 77 years; 65 females, 15 males) were included in the study. Demographic properties of the participants (age, sex, education, occupation, marital status), relationship with care recipient, caregiving time, main diseases of the patients were recorded. After that CSAQ, Caregiver Well-Being Scale (CWBS) and Hospital Anxiety Depression Scale (HADS) were used for data collection. A test-retest interval of seven-days was used to assess the reliability. Internal consistency between the items was assessed by Cronbach's alpha coefficient. For reliability; test-retest reliability, intraclass correlation coefficient, and paired sample t tests were used. Intercorrelation of variables was performed with Spearman's rho tests. A ROC curve and sensitivity and specificity analysis were performed to determine the ability of the CSAQ to predict depression or anxiety.; Results: Totally 80 participants completed test/retest procedures. Content Validity Index values of the Items were sufficient and all items were included in the questionnaire. During exploratory factor analysis, 1 factor with eigenvalues greater than 1 were extracted, explaining 62.36% of the total variance. The corrected item total correlation coefficients for Item 2 and Item 5 were found to be <0.3. Therefore, these two items were omitted. Cronbach's α value was found as 0.90 (excellent level). Test-retest reliability (Intraclass correlation coefficient values range: 0.93-0.97) of the CSAQ was found to be excellent. Statistically negative moderate correlations were detected between CSAQ total score and CWBA basic needs and activities of living sub scores (rho = -0.605, rho = -0.523, p < 0.001), while positive strong correlations were detected between HADS depression and anxiety scores (rho = 0.610, rho = 0.651, p < 0.001). CSAQ score of 9 or greater resulted in a sensitivity of 0.56 and a specificity of 0.87 for depression and sensitivity of 0.84 and a specificity of 0.83 for anxiety. According to the scoring instructions of CSAQ with the positivity of any one of four criteria, we found sensitivity of 0.87 for depression and 0.96 for anxiety.; Conclusion: The Turkish version of the CSAQ is a valid and reliable questionnaire for evaluating stress-levels of informal family caregivers. Implications for rehabilitation Measures of caregivers' psychological status are of clinical value. The Caregiver Self-Assessment Questionnaire functions as a screening measure for symptoms of depression and anxiety. The Turkish version of the Caregiver Self-Assessment Questionnaire is a valid and reliable questionnaire for evaluating stress-levels of informal family caregivers.

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"Like Death is Near": Expressions of Suicidal and Homicidal Ideation in the Blog Posts of Family Caregivers of People with Dementia

Background: The challenges of providing care for someone with Alzheimer's disease and related dementias (ADRD) have been associated with increased stress, poor mental and physical health, social isolation, and financial distress. More recently, caregiving has been associated with high rates of suicidal and homicidal ideation, but the research on these phenomena is limited. The present study analyzed a sample of blogs written by family caregivers of people with ADRD to explore thoughts of suicide and homicide expressed by these caregivers. Methods: Blogs written by self-identified informal caregivers of people with ADRD were identified using a systematic search method and data were analyzed using a qualitative thematic analysis. Results: Five themes related to thoughts of suicide and homicide by caregivers and people with ADRD were derived from the analysis: (1) end-of-life care; (2) thoughts of death and euthanasia by the person with ADRD; (3) surrogate decision making; (4) thoughts of suicide by the caregiver; and (5) thoughts of homicide and euthanasia by the caregiver. Conclusions: The results capture the reality of suicidal and homicidal thoughts among family caregivers of people with ADRD, supporting calls for more research on these complex topics and highlighting the need for changes to clinical practice to prevent thoughts from becoming behaviors or actions.

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Mutual Effects of Depression on Quality of Life in Patients and Family Caregivers

OBJECTIVES: To elucidate the importance of mutual effects within dyads by examining the contribution of depression on quality of life (QOL) in patients with advanced cancer and their family caregivers (FCs). SAMPLE & SET TING : 716 patients with advanced cancer paired with their FCs at two large, private not-for-profit hospices. METHODS & VARIABLES: A descriptive, cross-sectional design with the baseline data of a randomized hospice clinical trial was used. Structural equation modeling helped examine four hypotheses by integrating the features of the Actor-Partner Interdependence Model. Variables included QOL and depression. RESULTS: Depression in patients with cancer and their FCs exhibited significant actor effects on an individual's QOL after controlling for the partner effects. Among the spousal pairs, depression in FCs exhibited a positive partner effect on the functional well-being of patients with cancer, indicating that depressive symptoms occurring in FCs may increase patients' functional well-being. IMPLICATIONS FOR NURSING: This study suggests the importance of consistent assessment in emotional well-being for dyads with cancer because their concerns may be transmitted to each other.

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Factors related to sense of competence in family caregivers of people living with dementia in the community: a narrative synthesis

Objectives: Sense of competence defines a caregiver's feeling of being capable to manage the caregiving task and is an important clinical concept in the caregiving literature. The aim of this review was to identify the factors, both positive and negative, associated with a caregiver's perception of their sense of competence.; Design: A systematic review of the literature was conducted, retrieving both quantitative and qualitative papers from databases PsycINFO, CINAHL, EMBASE, and Medline. A quality assessment was conducted using the STROBE and CASP checklists, and the quality rating informed the inclusion of papers ensuring the evidence was robust. Narrative synthesis was employed to synthesize the findings and to generate an updated conceptual model of sense of competence.; Results: Seventeen papers were included in the review, all of which were moderate to high quality. These included 13 quantitative, three mixed-methods and one qualitative study. Factors associated with sense of competence included: behavioral and psychological symptoms of dementia (BPSD), caregiver depression, gratitude, and the ability to find meaning in caregiving.; Conclusions: The results of this review demonstrate that both positive and negative aspects of caring are associated with caregiver sense of competence. Positive and negative aspects of caregiving act in tandem to influence caregiver perception of their competence. The proposed model of sense of competence aims to guide future research and clinical interventions aimed at improving this domain but requires further testing, as due to the observational nature of the include papers, the direction of causality could not be inferred.

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The Impact of Stigma on Community Reintegration of Veterans With Traumatic Brain Injury and the Well-Being of Their Caregivers

Objective: To assess the association between perceived stigma and discrimination and caregiver strain, caregiver well-being, and patient community reintegration.; Design: A cross-sectional survey study of 564 informal caregivers of U.S. military service veterans of wars in Iraq and Afghanistan who experienced traumatic brain injuries or polytrauma (TBI/PT).; Setting: Care settings of community-dwelling former inpatients of U.S. Department of Veterans Affairs Polytrauma Rehabilitation Centers.; Participants: Caregivers of former inpatients (N=564), identified through next-of-kin records and subsequent nominations.; Interventions: Not applicable.; Main Outcome Measures: Caregiver strain, depression, anxiety, loneliness, and self-esteem; as well as care recipient community reintegration, a key aspect of TBI/PT rehabilitation.; Results: Family stigma was associated with strain, depression, anxiety, loneliness, lower self-esteem, and less community reintegration. Caregiver stigma-by-association was associated with strain, depression, anxiety, loneliness, and lower self-esteem. Care recipient stigma was associated with caregiver strain, depression, anxiety, loneliness, lower self-esteem, and less community reintegration.; Conclusions: Perceived stigma may be a substantial source of stress for caregivers of U.S. military veterans with TBI/PT, and may contribute to poor outcomes for the health of caregivers and for the community reintegration of the veterans for whom they provide care.

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Association between incongruence about survivor function and outcomes among stroke survivors and family caregivers

Background: Stroke survivors and family caregivers often have incongruent appraisals of survivor cognitive, physical, and psychosocial function. Partner incongruence contributes to poor outcomes for survivors and caregivers. Objectives: This study explored whether partner incongruence: (1) differs by function domain; (2) increases or decreases over time, and; (3) is associated with self-rated health, distress, stress, and depressive symptoms. Methods: Structured surveys were administered to 32 survivors and caregivers at approximately 3 (enrollment) and 7 months (follow-up) post-stroke. Paired t-tests were used to examine partners' ratings of survivor function at enrollment and follow-up, and changes in incongruence over time. Partial correlations were used to examine the association between incongruence at enrollment and outcomes at follow-up. Results: Survivors consistently rated their own memory and thinking as significantly better than caregivers rated their memory and thinking. At follow-up, survivors rated their own communication as significantly better than caregivers rated their communication. Incongruence about survivor memory and thinking was associated with survivor distress, as well as caregiver distress, stress, and depressive symptoms. Incongruence about survivor ADLs was associated with caregiver stress and depressive symptoms. Incongruence about survivor social participation was associated with caregiver distress. Conclusions: Findings from this study suggest that survivors and caregivers often have incongruent appraisals of survivor function, that incongruence does not improve naturally over time, and that incongruence may be detrimental for survivor and caregiver outcomes. Further research should be directed at the mitigation of incongruence and strategies to improve outcomes for both survivors and family caregivers.

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Mediators of burden and depression in dementia family caregivers: Kinship differences

Objectives: To investigate kinship differences in the caregiver stress process by developing multiple mediation models for two distinct caregiver subgroups (spouses and adult children of older adults living with dementia). The effect of four potential mediating variables (mastery, self-efficacy, satisfaction with social support, positive caregiving appraisals) on the relationship between perceived burden and depression was evaluated.; Method: Family caregivers of a person living with dementia were recruited through national dementia and carer organisations. Participants completed a paper-based or electronic version of the study survey. A bias-corrected, accelerated bootstrapping method was used to test the effect of the four proposed mediating variables on the relationship between perceived burden and depression in each caregiver subgroup (spouses and adult children).; Results: Perceived burden was directly and significantly related to depression for both spouse caregivers and adult child caregivers. The mediation models explained approximately 50% of the variance in the burden-to-depression pathway for both caregiver subgroups. Mastery and social support (but not self-efficacy, nor positive caregiving appraisals) were found to individually significantly influence the impact of perceived burden on depression in spouse caregivers. All four proposed mediators failed to reach statistical significance as individual mediators of the burden-to-depression pathway in adult child caregivers.; Conclusion: These findings demonstrate differences in the dementia caregiver experience according to kinship, and that certain mediating variables are more relevant for some subgroups of caregivers than others. Implications for the design of psychosocial interventions are discussed.

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Comparative Effectiveness of 2 Interventions for Hispanic Caregivers of Persons with Dementia

Objectives: To compare the effectiveness of 2 caregiver interventions with known efficacy: the Resources for Enhancing Caregiver Health‐Offering Useful Treatment (REACH‐OUT) and the New York University Caregiver Intervention (NYUCI). Design: 1:1 randomized pragmatic trial. Setting: New York City. Participants: Informal Hispanic caregivers of persons with dementia (N=221; mean age 58.2, 82.8% female, 63.3% adult children, 31.7% spouses). Intervention: Participants were randomized to 6 months of NYUCI (n=110) or REACH‐OUT (n=111), balanced on characteristics at baseline. All participants were referred for social supportive services. Measurements: The primary outcomes were changes between baseline and 6 months in depressive symptoms, measured using the Geriatric Depression Scale (GDS), and caregiver burden, measured using the Zarit Caregiver Burden Scale (ZCBS). Results: There were no differences in outcomes between NYUCI and REACH‐OUT. Both interventions showed a reduction in burden (REACH‐OUT: 5.2 points, 95% confidence interval (CI)=2.2–8.1, p<.001; NYUCI: 4.6‐points, 95% CI=1.7–7.5, p=.002). There were no significant changes on the GDS. Effects for the ZCBS were significant only for spouses and older caregivers. Conclusion: Although there were no significant intervention group differences, both interventions resulted in significantly reduced burden for Hispanic caregivers at 6 months, particularly for spouses and older caregivers.

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The impact of depression and anxiety on quality of life in Chinese cancer patient-family caregiver dyads, a cross-sectional study

Background: Cancer and its treatment can result in psychological distress in both adults with cancer and in their family caregivers. This psychological distress acts as a significant adverse factor in patient-caregiver dyads. The study purposes included: (i) to assess anxiety and depression in adults with cancer and their family caregivers, and examine the dyadic relationship of anxiety and depression in patient-caregiver dyads; (ii) to investigate factors that may modify these relationships; and (iii) to explore the impact of anxiety and depression on patient-caregiver dyad quality of life (QOL).; Methods: This was a secondary analysis of a cross-sectional study. Participants consisted of 641 patient-caregiver dyads. Participants completed a survey assessing adults with cancer-related, family caregiver-related, and family-related variables using a demographic/clinical information sheet. In addition, anxiety/depression and QOL were assessed by using the Chinese version of the Hospital Anxiety and Depression Scale and SF-12 respectively. Data were analyzed by using descriptive statistics, Pearson correlations, subgroup analysis, and the Actor-Partner Interdependence Model.; Results: Nearly one-third of participants had experienced anxiety and depression. Adults with cancer and family caregivers experienced a similar degree of anxiety and depression. Correlations (r) of anxiety and depression between patient-caregiver dyads ranged from 0.25 to 0.32. Various factors influencing the anxiety and depression relationship between patient-caregiver dyads were identified, including adults with cancer-related (e.g., age, gender, marital status, level of being informed about the disease, different types of cancer and treatment), family caregiver-related (e.g., being the spouse of a patient, duration in their role as a family caregiver, and amount of time spent on caregiving each day), and family-related (family relationship pre- and post-cancer, financial burden on the family due to cancer treatment) variables. To some extent, both actor and partner effects were identified for anxiety and depression on the QOL of patient-caregiver dyads.; Conclusions: Study findings call attention to anxiety and depression, as well as related factors, in patient-caregiver dyads. The underlined essential components and focus of intervention, which will be developed to decrease psychological distress and improve QOL in patient-caregiver dyads, included individual characteristics of patient-caregiver dyads, family relationship, and anxiety and depression in their counterparts.;

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Factors Affecting Family Caregivers' Burden and Depression in Home-based Long-Term Care Service under the Long-Term Care Insurance System

Purpose: This study tried to identify changes in family burden after the introduction of the long-term care insurance and to examine the factors influencing subjective and objective caring burden and depression of family caregivers of elders receiving home-based long-term care. Methods: Data were collected from 203 family caregivers of elders from August 1 to 31, 2015 using questionnaires. They were analyzed in descriptive statistics, t test, ANOVA test, and multiple regression analysis. Results: The mean score of depression was 7.24, which suggested mild depression level. The subjective family burden was 2.71 and the objective burden 3.04. The factors affecting depression included subjective burden (t=5.08, p<.001), objective burden (t=2.80, p=.006), time of elderly care per day (t=-3.61, p< .001), caregiving duration (t=3.33, p=.001), age (t=3.13, p=.002), family relationship (t=2.48, p=.014), and economic status (t=1.99, p=.047). Conclusion: The family burden was most important influencing factor on caregiver's depression. Therefore, services and supports to alleviate caregivers' burden in the home-based care should be added to long-term care.

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Effects of family-centered empowerment intervention on stress, anxiety, and depression among family caregivers of patients with epilepsy

Objectives Family caregivers face numerous challenges in taking care of their family members with epilepsy. The empowerment of this group of people, who can be described as forgotten patients, should always be considered through supportive interventions; therefore, this study investigated the effect of a family-centered intervention program on stress, anxiety, and depression among family caregivers of patients with epilepsy. Methods In 2017, a trial was conducted in Iran among subjects selected by the convenience sampling method and randomly assigned to two groups: intervention and control. After five sessions per week over a four-week period, the intervention- and control-group data were collected using the Depression Anxiety Stress Scale (DASS) in three stages: before, immediately after, and two months after the intervention. Data were analyzed with Statistical Package for the Social Sciences (SPSS) software using descriptive and analytical statistics, an independent t -test, and repeated measures Analysis of variance (ANOVA). Results In this study, the family caregivers included 61.3% women and 38.7% men, with a mean age of 37.5 years. The findings showed no significant differences in the mean scores of stress (p = 0.93), anxiety (p = 0.91), and depression (p = 0.56) before the interventional program between the intervention and control groups, but these differences were statistically significant in the mean score of stress (p = 0.003) in the immediately after the interventional program, whereas the mean scores of depression were not decreased significantly (p = 0.3). Two months after the interventional program the mean scores of stress (p = 0.001) and anxiety (p = 0.001) were significantly decreased in the intervention group, but the mean score of depression was not decreased significantly (p = 0.09). Conclusion The results suggested that a family-centered intervention program reduced the stress, anxiety, and depression of caregivers because of feasibility, simplicity, and utility of intervention. This program was focused on psychological issues of caregivers, and an emphasis on their empowerment helped them in managing their problems in the caregiving situation and achieved greater psychological potency in the caring process. 

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Negative repercussions of caregiving burden: Poor psychological well-being and depression

Objectives: To compare depression and psychological well-being between caregivers of schizophrenic patients and non-caregivers and to study the burden of caregiving as a relative risk for depression and psychological well-being.; Methods: This cross sectional comparative study was conducted at International Islamic university Islamabad from January to September 2017. Fifty informal caregivers of schizophrenic patients from 19 to 55 years of age were included in the study. The control group consisted of age and socio-economic status matched healthy volunteers who did not have any psychological or medical patient at home needing care and assistance. For measurement of study variables i.e., burden of caregiving, depression and psychological well-being, instruments used were Zarit Burden Interview (ZBI), The Beck Depression Inventory (BDI) and Warwick-Edinburgh Mental Well-Being Scale (WEMWBS) respectively.; Results: Results were analyzed using MANOVA followed by One-Way ANOVA. Findings indicated that informal caregivers of schizophrenia have greater depression and poor psychological well-being in comparison to the non-caregiver controls. Association of caregiving burden with psychological well-being and depression was calculated using Chi Square test and relative risk.; Conclusion: Caregiving adversely affects informal caregivers' mental health and wellbeing. Informal caregiving is a burden for the caregivers; health status of family members involved in caregiving should be routinely assessed to enhance their health-related quality of life.

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Predictors of psychological distress and sleep quality in former family caregivers of people with dementia

Objectives: The stress-related psychological symptoms experienced by informal family caregivers do not always improve or resolve after the death of the care recipient. The purpose of this study was to explore the independent associations of sociodemographic variables, personality and coping, environmental variables, and caregiver guilt with the sleep quality and psychological distress of former family caregivers of individuals with dementia following care recipient's death.; Method: A cross-sectional, correlational study was conducted with a sample of 171 former family caregivers of people with dementia. Participants completed an online survey comprised of six instruments and demographic items. Caregiver personal variables (e.g. personality and coping), environmental variables, guilt, psychological distress (depressive and anxiety symptoms), and sleep quality were evaluated using psychometrically validated measures.; Results: In bivariate analysis, post-caregiving guilt was significantly associated with depressive and anxiety symptoms (p < 0.01). After controlling for covariates, dysfunctional coping and neuroticism explained 32% of the variance in depressive symptoms (R2 = .52, ΔR2 = .32, F(5, 165) = 36.24, p < .001) and 24% of the variance in anxiety symptoms (R2 = .41, ΔR2 = .24, F(5, 165) = 22.65, p < .001), while dysfunctional coping, pre-loss depression, and extraversion accounted for 16% of the variance in sleep quality (R2 = .30, ΔR2 = .16, F(6, 164) = 11.44, p < .001).; Conclusion: This study demonstrates the critical role of personal variables, including personality traits, coping strategies, and pre-loss depression, in explaining psychological distress and sleep quality in this sample of former dementia caregivers.

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Caregiver's psychosocial concerns and psychological distress in emergency and trauma care setting

Background: Traumatic brain injury (TBI) will be the third largest killer by the year 2020 in the world. It creates the great amount of morbidity, disability, mortality, and reduces the psychosocial well-being of the patients and their caregivers. Hence, the current paper aimed to explore the psychosocial distress and caregivers' concerns in emergency and trauma care (ETC) setting. Methodology: This study adopted qualitative research design. All caregivers of TBI survivors were considered as a universe of the study. A total of 50 caregivers were recruited, and the predesigned questionnaire was administered. Depression, anxiety, stress scale was used to identify the caregivers' depression, stress, and anxiety. The simple thematic analysis was used to derive the themes from the verbatim data. Data were analyzed using SPSS version 21.0 (SPSS South Asia Pvt.Ltd, Bengaluru, Karnataka, India). Results: In the quantitative analysis, caregivers' mean age was found to be 45 (mean = 45.00 ± 13.83) years. Caregivers had experienced mild depression (13.36 ± 3.07), moderate anxiety (13.70 ± 3.03), and minimum stress (13.66 ± 2.98) levels. Qualitative results identified the following themes: difficulty in accessing timely care, uncertainty about the prognosis and future, family concerns and financial constraints, personal feelings and personal needs, and supportive care. Chi-square test revealed that there was no significant association between gender and depression (χ2 = 2.381 P < 0.12), anxiety (χ2 = 0.01 P < 0.92), and stress (χ2 = 0.235 P < 0.61) levels of caregivers. Conclusion: To accomplish, providing psychosocial care in ETC setting, the role of psychiatric social workers is pivotal. 

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Fulfilling the psychological and information need of the family members of critically ill patients using interactive mobile technology: A randomised controlled trial

Background Intensive care nurses may have an important role in empowering families by providing psychological support and fulfilling the family's pivotal need for information. Aim To determine whether ‘education of families by tab’ about the patient’s condition was more associated with improved anxiety, stress, and depression levels than the ‘education of families by routine’. Research design A randomized control trial of 74 main family caregivers (intervention: 39; control: 35). Setting An adult intensive care unit. Main outcome measures Depression Anxiety Stress Scale, and Communication and Physical Comfort Scale. Results Although information need satisfaction was not significantly different between intervention and control groups, the former reported significantly better depression score on Depression Anxiety Stress Scale comparing to the control group (p<0.01;η2=0.09) with a medium effect size. Reduction of anxiety in the intervention group were clinically significant. Conclusion The results suggest that use of ‘education of family by tab’ is promising for intensive care nurses to provide psychological support for family members. More studies are needed to investigate this aspect of family care for better psychological support and information need satisfaction that contributes to the evidence-based practice of intensive care nursing.

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Anxiety and Depression Associated With Burden in Caregivers of Patients With Brain Metastases

Purpose/Objectives: To describe and examine the relationship between caregiver burden and the affective disorders anxiety and depression in caregivers of patients with brain metastases. Design: Cross-sectional, descriptive, correlational. Setting: Moores Cancer Center at the University of California, San Diego.Sample: 56 family caregivers of patients with brain metastases from solid tumors at other primary sites. Methods: Self-administered survey. Main Research Variables: Caregiver burden, anxiety, and depression. Findings: With the exception of caregiver esteem, no statistically significant relationships were noted between impact on schedule, a dimension of caregiver burden, and screening positive for affective disorders. Conclusions: Findings from this study support previous reports indicating that the odds of having anxiety and depressive symptoms are greater in family caregivers who report higher levels of caregiver burden. Implications for Nursing: The identification and management of caregiver burden are important considerations for a comprehensive cancer care program. Addressing the needs of the cancer caregiver, who is at heightened risk for various psychological, physical, financial, and social problems, is increasingly vital.

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Income-based inequalities in caregiving time and depressive symptoms among older family caregivers under the Japanese long-term care insurance system: a cross-sectional analysis

AIM: Long-term care systems may alleviate caregiver burdens, particularly for those with fewer resources. However, it remains unclear whether socioeconomic disparity in caregiver burdens exists under a public, universal long-term care insurance (LTCI) system. This study examined income-based inequalities in caregiving time and depressive symptoms in Japanese older family caregivers. We further compared inequality in depressive symptoms with that of non-caregivers to evaluate whether family caregiving exacerbates this disparity. METHODS: Data were obtained from a cross-sectional, nationwide survey conducted by the Japan Gerontological Evaluation Study in 2013. Participants were functionally independent older adults aged >=65 years (N = 21,584). Depressive symptoms were assessed using the Geriatrics Depression Scale (GDS); caregiving hours per week, household income, and other covariates were also assessed. RESULTS; Family caregivers occupied 8.3 per cent of the total. A Poisson regression model revealed that caregivers in lower income groups (compared to those in the highest) were 1.32 to 1.95 and 1.63 to 2.68 times more likely to engage in >=36 and >=72 hours/week of caregiving, respectively. As for the GDS (>=5), an excess risk was found in the caregivers in lower (compared to higher) income groups (adjusted prevalence ratio: 1.57-3.10). However, an interaction effect of income by caregiving role indicated no significant difference in inequality between caregivers and non-caregivers (p = .603). The excess risk for GDS (>=5) in the caregivers compared to non-caregivers was observed across income groups. CONCLUSIONS: Our findings revealed a possible disparity in family caregivers under the public LTCI system. Further studies should examine factors associated with longer caregiving hours in lower income households. Our findings also suggest the necessity for more efforts to alleviate depressive symptoms in family caregivers under the LTCI system regardless of income level, rather than exclusively supporting those with a low income. 

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Depression in Family Caregivers of Mexican Descent: Exacerbated by Stress and Mitigated by Mutuality

Despite common assumptions that non-paid family caregivers of Mexican descent benefit spiritually from their roles according to cultural familistic norms, there is also evidence of caregiver stress resulting in depression. Depression has the potential to seriously affect caregivers' health and their ability to continue to provide care. The current study's purpose was to examine the relationships among depression, stress, and mutuality (i.e., the quality of the caregiver-care recipient relationship) ( N = 74 caregivers of Mexican descent in the southwestern United States). Multiple regression models and exploratory mediational analyses indicated that the stress-depression relationship can be significantly mediated by mutuality. Results support culturally appropriate interventions to decrease caregiver stress and depression by promoting mutuality. In addition, with changing trends in outside work roles and mobility of caregivers of Mexican descent, policy should make services truly accessible to support caregiving families of Mexican descent.

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CareACT - internet-based intervention for enhancing the psychological well-being of elderly caregivers – a study protocol of a controlled trial

Background: The rapid increase in the number of elderly family caregivers underlines the need for new support systems. Internet-delivered psychological interventions are a potential approach, as they are easy to access for family caregivers who are often homebound with their care recipient. This study examines the relative effectiveness of an internet-based acceptance and commitment therapy (ACT) intervention or a standardized institutional rehabilitation program, first, in reducing depressive symptoms, and second, in improving the well-being and quality of life of elderly family caregivers compared to a control group receiving support from voluntary family caregiver associations. Methods: 156 family caregivers aged 60 or more are studied in a quasi-experimental study design that compares three groups of family caregivers (Group 1; n = 65: a guided 12-week web-based intervention; Group 2, n = 52: a standardized institutional rehabilitation program in a rehabilitation center; Group 3, n = 39: support provided by voluntary caregiver associations). Data collection is performed at three time-points: pre-measurement and at 4 months and 10 months thereafter. Caregivers’ depressive symptoms as a primary outcome, and perceived burden, anxiety, quality of life, sense of coherence, psychological flexibility, thought suppression, and personality as secondary outcomes are measured using validated self-report questionnaires. Physical performance and user experiences are also investigated. Between-group differences in the effects of the interventions are examined using multiple-group modeling techniques, and effect-size calculations. Discussion: The study will compare the effectiveness of a novel web-based program in reducing depressive symptoms and improving the psychological well-being of elderly family caregivers, or a standardized institutional rehabilitation program representing usual care and a control group receiving support offered by voluntary caregiver associations. The results will expand the knowledge base of clinicians and provide evidence on effective strategies to improve the mental health and overall quality of life of elderly family caregivers. Trial registration: The study was retrospectively registered in www.clinicaltrials.gov (ClinicalTrials.gov Identifier: NCT03391596 on January 4, 2018.

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Characteristics of the spouse caregiving experience: comparison between early- and late-onset dementia

Objectives: To investigate the characteristics of the caregiving experience according to age at onset of dementia to adapt support programmes. Method: Fifty-seven spouse caregivers of persons with early-onset dementia (PEOD) and 93 spouse caregivers of persons with late-onset dementia (PLOD) participated. The characteristics of the caregiving experience were assessed using questionnaires. The authors compared the two groups according to age at onset of the disease using a multivariate test, Pillai's Trace test. Results: The analysis showed that there were similarities and differences between the two groups of spouse caregivers. All spouse caregivers were confident in their caregiving role and fairly well prepared for future needs and reported mild depressive and anxious symptoms. However, they lacked informal support, had low confidence in requesting respite care and reported effects on their health. Compared to spouse caregivers of PLOD, spouse caregivers of PEOD had more severe perceptions of the cognitive disorders of persons with dementia (PWD) and had a better sense of preparedness and knowledge of services. Spouse caregivers of PLOD were more confident in their ability to control disturbing thoughts. Conclusion: The results suggest that programmes should provide information on support networks to improve preparedness for spouse caregivers of PLOD as well as emphasizing positive coping strategies for caregivers of PEOD to maintain good-quality relationships with PWD, which influences the perception of the symptoms. For both groups, family relationships should be considered.

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Caregiver burden in Alzheimer's disease: moderation effects of social support and mediation effects of positive aspects of caregiving

Objectives: Although there are many studies on the relationship between patient‐related factors and negative caregiver outcomes, the specifics of this relationship are poorly understood. Aim: to examine whether caregiver social support moderated the relationship between patient factors and negative outcomes for caregivers of community‐dwelling older adults with Alzheimer's disease (AD), and whether positive aspects of caregiving mediated this relationship. Methods: a cross‐sectional study of patients diagnosed with AD from 2 hospitals and 3 communities in Taiyuan, China, and their caregivers. Latent moderated structural equations and the bias‐corrected percentile bootstrap method were used to estimate the parameters of moderating and mediating effects, respectively. Results: Social support significantly moderated the effects of AD patient cognitive function (P < 0.001) and depression (P = 0.001) on caregiver burden. Positive aspects of caregiving completely mediated the association between patient depression and caregiver burden (P = 0.006), caregiver anxiety (P = 0.007), and caregiver depression (P = 0.034). Conclusions: The findings identify social support as a moderator and positive aspects of caregiving as a mediator of the relationship between patient‐related factors and negative caregiver outcomes. The results suggest that health care providers must offer more effective social support for caregivers. In addition, prompt identification of patient and caregiver emotional states could help to improve quality of life.

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Gender effects on components of burden and depression among dementia caregivers

Objective: Previous literature has examined burden and depression predominately as unitary constructs in relation to dementia caregiving. No studies thus far have examined gender differences in the specific components of burden and depression in dementia caregivers. The current study examined whether empirically validated dimensions of caregiver burden differed by gender for dementia caregivers. Methods: The sample consisted of 211 dementia caregivers enrolled in a longitudinal intervention study. Only baseline functioning was evaluated in this study. Levels of burden were assessed using the Zarit Burden Interview (ZBI), and levels of depression were assessed using the Center for Epidemiologic Studies Depression Scale (CES-D). Results: Factor analysis revealed three facets of burden: impact of caregiving on the caregivers’ lives, guilt, and frustration/embarrassment, and four facets of depression: depressed affect, somatic activity, positive affect, and interpersonal feelings. Overall burden (p < .001) and impact of caregiving on the caregivers’ life (p < .001) were significantly higher in females. Overall levels of depression (p = .018), somatic and retarded activity (p = .018), depressed affect (p = .005), and positive affect (p = .012) were significantly higher in females. Conclusions: Findings suggest that distressed male and female dementia caregivers experience caregiving differently. Results from this study could be used to identify gender-specific interventions related to subtypes of burden and depression to optimize quality of life for caregivers.

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Alzheimers’ disease and caregiving: a meta-analytic review comparing the mental health of primary carers to controls

Objectives: To quantitatively review the literature comparing depressed mood, anxiety and psychological distress in caregivers (CGs) of older adults with Alzheimer's disease (AD) with non-caregivers (NCGs) Methods: Eighteen independent studies comparing AD CGs (N = 2378) with NCGs (N = 70,035) were evaluated in accordance with the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guidelines. Standardised mean differences (Hedges’ g) with associated 95% confidence intervals and p-values were calculated using a random-effects model. Results: Studies generally conformed to STROBE criteria in terms of their methodological and procedural detail, although data management issues that may contribute to methodological bias were identified. Pooled effect estimates revealed medium to large group differences in depression (gw = 1.01 [CI: 0.73, 1.29] p < 0.01) and anxiety (gw = 0.64 [CI: 0.39, 0.89] p < 0.01): AD caregivers reported higher symptom severity. Gender was a significant moderator: female caregivers experienced poor self-reported mood (gw = 1.58 [CI: 1.11, 2.05], p< 0.01), although this analysis was limited in power given the small number of contributing studies. Discussion: Caregivers of patients with AD experience poor mental health in comparison to the general population, with female caregivers being disproportionately affected. Further exploration of the psychosocial variables that contribute to these group differences is needed to inform effective support services and, in turn, help caregivers manage the emotional demands of AD.

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The Relationship Between Family Caregiving and the Mental Health of Emerging Young Adult Caregivers

Caring for dependent relatives has become a normative challenge for families in the USA and throughout the world. The study objective was to examine the relationship of family caregiving responsibilities and the mental health and well-being of individuals, ages 18–24 years, referred to as emerging young adults. It was hypothesized that young adult caregivers with past and present responsibilities would report significantly more symptoms of depression and anxiety, have lower self-esteem, and use less adaptive coping styles than non-caregiving peers. The sample consisted of 353 undergraduates (81 past caregivers, 76 current/past caregivers, and 196 non-caregivers). Caregivers were also evaluated in terms of care recipients, duration of caregiving, tasks, and hours of effort. Caregivers had significantly higher levels of symptoms of depression and anxiety than non-caregivers. Research to clarify how caregiving interacts with other stressors in emerging young adults and influences behavioral health should be a priority.

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Predictors of quality of life and depression among Korean‐American cancer patients and their family caregivers

Objective This study examined social, cultural, and appraisal factors associated with Korean‐American cancer patients' and their family caregivers' quality of life (QOL) and depression. Methods Data were from Korean‐American cancer patients and their family caregivers (N = 60 dyads) living in the United States. Study aims were examined using descriptive statistics and multiple regression. Results For patients, higher social support and lower negative appraisal of illness predicted higher patient QOL; negative appraisal of illness also predicted higher patient depression. For caregivers, older age, having fewer traditional Korean values, and more modern (individualistic) values predicted higher caregiver QOL. Caregivers who held more modern values also had less depression. Conclusions Higher support and less negative appraisal predicted better QOL in patients. For caregivers however, the type of cultural values they held (tradition or modern) was a key factor that predicted level of QOL and depression. Assessment of support and appraisal as well as attention to cultural values may enhance their QOL and reduce depression.

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Quality of life, anxiety, depression and burden among stroke caregivers: A longitudinal, observational multicentre study

Aim To longitudinally describe stroke caregivers’ quality of life, anxiety, depression and burden and to identify predictors of stroke caregivers’ quality of life, anxiety, depression and burden. Background Caregivers have a key role in stroke survivor care and the first year of caregiving is the most challenging. To give tailored interventions, it is important to capture changes and identify predictors of caregiver quality of life, anxiety, depression and burden during the first year. Design A 12‐month longitudinal study. Data were collected between June 2013–May 2016. Methods Changes in stroke caregiver quality of life, anxiety and depression and burden and their predictors were identified using linear mixed‐effects models. Results The caregivers (N = 244) were 53 years old and mostly female. Caregiver quality of life did not change significantly over the 12 months, anxiety and depression decreased up to 9 months and caregiver burden decreased from baseline to 3 months, then increased up to 9 months. Higher caregiver quality of life was predicted by caregiver younger age, higher education, living with a stroke survivor, survivor older age and higher physical functioning; higher anxiety and depression were predicted by older caregiver age and younger survivor age; higher burden was predicted by caregiver male gender, the caregiver not living with survivor and survivor lower physical functioning. Conclusion The first 9 months of caregiving are particularly problematic for caregivers. The trajectories of the above variables and their predictors may be useful for policy makers, clinicians, investigators and educators to give better care to stroke caregivers and their survivors.

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Caregiver burden in amyotrophic lateral sclerosis: A systematic review

Background: Informal caregivers of patients with amyotrophic lateral sclerosis experience increased levels of caregiver burden as the disease progresses. Insight in the factors related to caregiver burden is needed in order to develop supportive interventions. Aim: To evaluate the evidence on patient and caregiver factors associated with caregiver burden in amyotrophic lateral sclerosis informal caregivers. Design: A systematic review. Data sources: Four electronic databases were searched up to 2017. Studies that investigated quantitative relations between patient or caregiver factors and caregiver burden were included. The overall quality of evidence for factors was assessed using the Grading of Recommendations Assessment, Development and Evaluation approach. Results: A total of 25 articles were included. High quality of evidence was found for the relation between caregiver burden and the factor "behavioral impairments." Moderate quality of evidence was found for the relations between caregiver burden and the factors "feelings of depression" of the caregiver and "physical functioning" of the patient. The remaining rated caregiver factors--"feelings of anxiety," "distress," "social support," "family functioning," and "age"--and patient factors--"bulbar function," "motor function," "respiratory function," "disease duration," "disinhibition," "executive functioning," "cognitive functioning," "feelings of depression," and "age"--showed low to very low quality of evidence for their association with caregiver burden. Conclusion: Higher caregiver burden is associated with greater behavioral and physical impairment of the patient and with more depressive feelings of the caregiver. This knowledge enables the identification of caregivers at risk for caregiver burden and guides the development of interventions to diminish caregiver burden.

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The Use of Life-Sustaining Procedures in the Last Month of Life Is Associated With More Depressive Symptoms in Surviving Spouses

Context Family caregivers of individuals with serious illness who undergo intensive life-sustaining medical procedures at the end of life may be at risk of negative consequences including depression. Objectives The objective of this study was to determine the association between patients' use of life-sustaining procedures at the end of life and depressive symptoms in their surviving spouses. Methods We used data from the Health and Retirement Study, a longitudinal survey of U.S. residents, linked to Medicare claims data. We included married Medicare beneficiaries aged 65 years and older who died between 2000 and 2011 (n = 1258) and their surviving spouses. The use of life-sustaining procedures (i.e., intubation/mechanical ventilation, tracheostomy, gastrostomy tube insertion, enteral/parenteral nutrition, and cardiopulmonary resuscitation) in the last month of life was measured via claims data. Using propensity score matching, we compared change in depressive symptoms of surviving spouses. Results Eighteen percent of decedents underwent one or more life-sustaining procedures in the last month of life. Those whose spouses underwent life-sustaining procedures had a 0.32-point increase in depressive symptoms after death (scale range = 0-8) and a greater likelihood of clinically significant depression (odds ratio = 1.51) compared with a matched sample of spouses of those who did not have procedures (P < 0.05). Conclusion Surviving spouses of those who undergo intensive life-sustaining procedures at the end of life experience a greater magnitude of increase in depressive symptoms than those whose spouses do not undergo such procedures. Further study of the circumstances and decision making surrounding these procedures is needed to understand their relationship with survivors' negative mental health consequences and how best to provide appropriate support. 

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If they are OK, we are OK: the experience of partners living with neuromyelitis optica

Aim: Neuromyelitis optica (NMO) is a rare neuro-inflammatory condition characterized by acute relapses causing severe visual or physical disability. The impact on family members and their experiences have not been studied. The study aims were to explore the lived experience of partners of people with NMO and to investigate potential carer burden in this population. Method: A mixed-method design was used; 11 partners of people with NMO completed semi-structured interviews; 54 partners completed Zarit Burden Interview and Hospital Anxiety and Depression Scale. Results: Three qualitative themes influenced partners’ quality of life (QoL): role/relationship; it’s all about them; and the impact of NMO. Life changed dramatically for participants after the first NMO attack, necessitating responsibility for physical, financial, social, and emotional support. As NMO symptoms improved and stabilized, freedom and QoL for spouses also improved, albeit with on-going worries regarding the impact of potential devastating future relapses. Quantitative findings showed mild/moderate carer burden (46%), mild/moderate anxiety (59%), and mild/moderate depression (24%). No partner indicated severe carer burden, anxiety, or depression. Conclusion: Participants regarded themselves as partners rather than carers whom require assessment and support for their emotional and health well-being. Health-care professionals need to acknowledge the important role partners play in the dynamics of the family unit, through greater discussion and inclusion. 

Implications for Rehabilitation

  • NMO has a strong impact on couples, resulting in both physical caregiving needs and anxiety regarding the unpredictability of potential devastating relapses.
  • Partners do not necessarily experience clinically significant “burden”, anxiety or depression, and tools which screen for this may not capture the nature of their experiences.
  • Health-care professionals need to acknowledge, consult, and respect the experience of partners during assessment and implementation of action plans.
  • Partners should be individually assessed based upon the physical and emotional dependency created by NMO to improve their health and well-being.
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Family caregiving of individuals with traumatic brain injury in Botswana

Background The impairments that affect survivors of TBI impact the person’s independence, and family members frequently have to take on a caregiver role. This study examined the experience of caregiving for individuals with TBI in Botswana and its impact on psychological distress in caregivers. Methods Using a mixed methods study design, qualitative data from semi-structured interviews were thematically analyzed and triangulated with data regarding functional status from the Structured Head Injury Outcome Questionnaire and the Hospital Anxiety and Depression Scale (HADS). Results The study included 26 participants with moderate to severe TBI, and a total of 18 caregivers were recruited. Caregivers commonly reported receiving limited information regarding their relatives’ injuries and management methods. Heavy caregiving demands were placed on them, with little support from the healthcare system. A significant proportion of caregivers experienced anxiety and depression, which was associated with lower functional independence in their injured relative. Somewhat more spouses than parents reported clinically significant anxiety levels. Other consequences of caregiving included social isolation and limited support from the wider community as well as financial difficulties. Despite these stresses caregivers tended to accept their caregiving role. Cultural factors such devotion to their families and faith and belief in God moderated burden and distress. Conclusions Carers of individuals with TBI in Botswana face significant challenges. Rehabilitation efforts need to take these into account. Specifically, more information and support needs to be provided to survivors and their families. Psychological, economic and health needs of the care providers also should be addressed in the planning of rehabilitation interventions.

Implications for Rehabilitation

  • Caregivers of individuals with TBI in under-resourced countries carry much of the burden of care, face many challenges and experience significant stress. 
  • More information and support needs to be provided to survivors of TBI and their families in countries such as Botswana in a culturally sensitive manner.
  • Psychological, economic and health needs also need to be addressed in the planning of rehabilitation interventions, which are currently non-existent in Botswana.
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Impact of Behavioral Symptoms in Dementia Patients on Depression in Daughter and Daughter-in-Law Caregivers

Background: One caregiver relationship that has been neglected in caregiver depression research is the daughter-in-law. Compared with Western countries, in which those who are closer in familial relationships such as the spouse or child usually take care of the patient, in many Asian countries, the daughter-in-law often assumes the caretaker role. However, not much research has been done on how this relationship may result in different caregiver outcomes. We sought to identify whether the association between patient characteristics and caregiver depressive symptoms differs according to the familial relationship between caregiver and patient. Materials and Methods: Ninety-five daughter (n=47) and daughter-in-law (n=48) caregivers of dementia patients were asked to report their own depressive symptoms and patient behavioral symptoms. Patients' cognitive abilities, daily activities, and global dementia ratings were obtained. Hierarchical linear regression was employed to determine predictors of depressive symptoms. Results: Daughters-in-law had marginally higher depressive scores. After adjusting for caregiver and patient characteristics, in both groups, greater dependency in activities of daily living and more severe and frequent behavioral symptoms predicted higher caregiver depressive scores. However, greater severity and frequency of behavioral symptoms predicted depression to a greater degree in daughters compared with daughters-in-law. Conclusions: Although behavioral symptoms predicted depression in both caregiver groups, the association was much stronger for daughters. This suggests that the emotional relationship between the daughter and patient exacerbates the negative effect of behavioral symptoms on caregiver depression. The familial relationship between the caregiver and dementia patient should be considered in managing caregiver stress. 

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A randomized controlled trial of a home-based training programme to decrease depression in family caregivers of persons with dementia

Aims. The aim of this study was to explore distinct trajectories of caregivers' depressive symptoms and the effects of a training programme on these trajectories over 18 months after the programme. Background. Overall effects of caregiver-training programmes on family caregivers' depressive symptoms have been reported, but few studies explored distinct courses of changes in caregivers' depressive symptoms and followed up intervention effects on these distinct courses. Design. Randomized clinical trial. Methods. Family caregivers (n = 116) were randomly assigned into experimental (n = 57) and control (n = 59) groups. The experimental group received the training programme with telephone consultation and the control group received written educational materials and social telephone follow-ups. Caregivers' depressive symptoms were assessed from June 2009 - March 2012 by selfcompleted questionnaires before, at 2 weeks and 3, 6, 12 and 18 months after the intervention. Groups of individual trajectories were distinguished using groupbased trajectory modelling. Results. Caregivers' depressive symptoms fell into three stable trajectories: nondepressed, mildly blue and depressed. After controlling for covariates, caregivers who received the caregiver-training programme were less likely than those who did not experience persistent depressive symptoms (b = -1.92, odds ratio = 0.15, P < 0.05). Conclusion. Depressive symptoms of family caregivers of persons with dementia were relatively stable and followed three distinct courses: non-depressed, mildly blue and depressed. Therefore, caregivers' depressive symptoms should be assessed as early as possible. Caregivers in the experimental group had a lower probability of persistent depressive symptoms than caregivers in the control group. Therefore, this training programme can be used by healthcare providers for persons with dementia and their caregivers. Trial registration number: NCT02667951. References

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Relationships between Caregiving Stress, Depression, and Self-Esteem in Family Caregivers of Adults with a Disability

This study aimed to examine the relationships between caregiving stress, depression, and self-esteem of family caregivers of an adult person with a disability and to identify their effects on their caregiving burden. The study was performed with 108 care providers of adult people with a disability who visited hospital rehabilitation centers. Caregiving stress showed a significant positive correlation with depression and with economic and psychological stress, and it showed a significant negative correlation with self-esteem. When the care provider was aged, female, and without a job and the caregiving cost and time were higher, the caregiving stress was high. When the care provider was female and had a lower income, the depression index was high. When the person with a disability was male and in the forties and the level of disability was higher, the caregiving stress was high. When the disability was related to spinal cord damage, the care provider’s depression index was the highest. To reduce caregiving stress and depression in the family caregivers and to improve their self-esteem, continuous support and help from specialists are necessary. Additionally, a variety of intervention programs need to be designed to motivate them to participate regularly at the community level.

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Who are the support persons of haematological cancer survivors and how is their performance perceived?

Objective: To explore: (1) how haematological cancer survivors and their support persons perceive the overall performance of the support person; (2) disagreement between survivor and support person ratings; and (3) characteristics associated with support persons rating their performance poorly. Methods: This is a substudy of a larger project of Australian haematological cancer survivors and their support persons. For this substudy, haematological cancer survivors were recruited from 4 Australian population‐based cancer registries and asked to pass on a questionnaire package to their support persons. Survivors who passed on a questionnaire package to their support person were asked to answer questions about the support person and how they perceived the support person's performance. Similarly, support persons answered questions on their own performance as a support person. Results: A total of 924 haematological cancer survivors and 821 support persons were eligible for this study. Most survivors rated their support person as performing very well (84%) while less than half (48%) of support persons rated their own performance as very well. There was significant disagreement between survivor and their support person (dyad) ratings of the support person's performance. Support persons with above normal levels of depression (vs those with normal levels) had significantly higher odds of rating their own performance as “not well/somewhat well.” Conclusions: Health care providers should consider providing additional education and skills‐based interventions to support persons who experience increased symptoms of depression.

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Multimedia information intervention and its benefits in partners of the head and neck cancer patients

We aimed to investigate the levels of anxiety, depression, satisfaction with information provision and cancer‐related knowledge in partners of head and neck cancer (HNC) patients receiving a Multimode Comprehensive Tailored Information Package (MCTIP). A non‐randomised, controlled trial was conducted with partners of HNC patients recruited at two academic hospitals in Montreal. The Test participants received the MCTIP, while the Control participants received information in an ad hoc manner. All participants were evaluated using the Hospital Anxiety and Depression Scale (HADS), Satisfaction with Cancer Information Profile and a cancer knowledge questionnaire at baseline, and 3 and 6 months later. Data were analysed using descriptive statistics, t‐test and chi‐square test, and mixed model analysis to test the impact of the intervention. A total of 31 partners of HNC patients participated in this study and completed all the evaluations. The partners in the Test group experienced significantly lower levels of anxiety (= 0.001) and depression (P = 0.003) symptoms and were more satisfied (P = 0.002) with cancer information provided than partners in the Control group. Providing tailored information seems to have positive outcomes regarding anxiety, depression, and satisfaction in partners of HNC patients. Larger randomised studies are warranted to validate these effects.

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Web-based health interventions for family caregivers of elderly individuals: A Scoping Review

Background: For the growing proportion of elders globally, aging-related illnesses are primary causes of morbidity causing reliance on family members for support in the community. Family caregivers experience poorer physical and mental health than their non-caregiving counterparts. Web-based interventions can provide accessible support to family caregivers to offset declines in their health and well-being. Existing reviews focused on web-based interventions for caregivers have been limited to single illness populations and have mostly focused on the efficacy of the interventions. We therefore have limited insight into how web-based interventions for family caregiver have been developed, implemented and evaluated across aging-related illness. Objectives: To describe: a) theoretical underpinnings of the literature; b) development, content and delivery of web-based interventions; c) caregiver usage of web-based interventions; d) caregiver experience with web-based interventions and e) impact of web-based interventions on caregivers’ health outcomes. Methods: We followed Arksey and O’Malley’s methodological framework for conducting scoping reviews which entails setting research questions, selecting relevant studies, charting the data and synthesizing the results in a report. Results: Fifty-three publications representing 32 unique web-based interventions were included. Over half of the interventions were targeted at dementia caregivers, with the rest targeting caregivers to the stroke, cancer, diabetes and general frailty populations. Studies used theory across the intervention trajectory. Interventions aimed to improve a range of health outcomes for caregivers through static and interactive delivery methods Caregivers were satisfied with the usability and accessibility of the websites but usage was generally low and declined over time. Depression and caregiver burden were the most common outcomes evaluated. The interventions ranged in their impact on health and social outcomes but reductions in perception of caregiver burden were consistently observed. Conclusions: Caregivers value interactive interventions that are tailored to their unique needs and the illness context. However, usage of the interventions was sporadic and declined over time, indicating that future interventions should address stage-specific needs across the caregiving trajectory. A systematic review has the potential to be conducted given the consistency in caregiver burden and depression as outcomes.

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The impact of cardiac arrest on the long-term wellbeing and caregiver burden of family caregivers: a prospective cohort study

Objective: The purpose was to gain insight in the functioning of caregivers of cardiac arrest survivors at 12 months after a cardiac arrest. Secondly, the course of the wellbeing of the caregivers during the first year was studied. Finally, factors that are associated with a higher care burden at 12 months after the cardiac arrest were investigated. Subjects: A total of 195 family caregivers of cardiac arrest survivors were included. Main measures: Quality of life (SF-36, EuroQol-VAS), caregiver strain (CSI) and emotional functioning (HADS, IES) were measured at two weeks, three months and one year after the cardiac arrest. Thereby, the caregiver was asked to fill out the cognitive failure questionnaire (CFQ) to evaluate their view on the cognitive status of the patient. Results: Caregiver strain was high in 16 (15%) of the caregivers at 12 months. Anxiety was present in 33 (25%) caregivers and depression in 18 (14%) caregivers at 12 months. The repeated measures MANOVA showed that during the first year the following variables improved significantly: SF-36 domains social and mental health, role physical, role emotional and vitality, caregiver strain, HADS and IES (P<0.001). At 12 months caregiver strain correlated significantly (explained variance 63%, P=0.03) with caregiver HADS (P=0.01), EuroQol-VAS (P=0.02), and the CFQ (P<0.001), all measured at 12 months after the cardiac arrest. Conclusions: Overall wellbeing of the caregivers improves during the first year up to normal levels, but caregivers with emotional problems or perceived cognitive problems at 12 months are at risk for developing a higher care burden. 

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The impact of the patient post-intensive care syndrome components upon caregiver burden

Objective: To evaluate patient post-intensive care syndrome (PICS-P) and caregiver burden 3 months after discharge from the Intensive Care Unit (ICU) and determine the impact of different components of PICS-P upon caregiver burden. Design: A prospective observational study was conducted over 26 months (January 2013–February 2015). Setting: Medical-surgical ICU and follow-up consultation in Portugal. Patients or participants: Patients discharged after a minimum of 2 days in the ICU. Caregiver inclusion criteria: not paid, written and spoken Portuguese, and agreement to participate in the study. Main variables of interest: In ICU: Patient gender, age, severity of illness (SAPS II) and length of ICU stay. At 3 months caregiver burden, physical (reduced mobility, weakness acquired in the ICU) and psychological components of PICS (anxiety, depression, post-traumatic stress disorder).  Results: A total of 168 caregivers completed the survey (response rate of 69%). A low degree of overburden was reported by 34.5% of caregivers, while 15.5% showed moderate to high levels of overburden. Patient anxiety and depression 3 months after ICU discharge significantly influenced the presence of caregiver burden (p=0.030 vs p=0.008).  When physical components of PICS-P were evaluated, no influence on caregiver burden was observed. Patient demographics, severity of illness and length of stay also failed to influence caregiver burden. Conclusions: The presence of psychological components of PICS-P 3 months after ICU seems to have a negative impact upon caregiver burden. On the other hand, physical problems showed no important impact upon caregiver overburden.

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Efficacy of a multi-component psychosocial intervention program for caregivers of persons living with neurocognitive disorders, Alexandria, Egypt: A randomized controlled trial

Background: Unlike other chronic diseases, dementia caregiving is associated with enormous psychological burden, which stresses the need for caregivers-directed psychosocial interventions. Aim: This randomized controlled trial (RCT) was conducted to evaluate the short-term efficacy of a multi-component psychosocial intervention program for informal caregivers of persons with neurocognitive disorders in Alexandria, Egypt. Methods: Informal caregivers (120) were randomly assigned into intervention and control groups. The intervention group (60) participated in a multi-component program of 8 sessions, including psycho-education, group cognitive-behavioral therapy, and group social support. Program primary outcomes were assessed after program termination (post-1), and three months later (post-2). Measured outcomes included caregivers' knowledge, depression and anxiety symptoms, and perceived burden. Results: Caregivers' depression, anxiety, and perceived burden demonstrated significant drop at post-1, and post-2 compared to the control group (P< 0.001). The intervention group showed significant negative absolute change on depression, anxiety, and perceived burden measures, while on the dementia-related knowledge measure, a significant positive absolute change was found at post-1, and post-2 (P< 0.001), in comparison to controls. All outcome measures recorded a large effect size; the highest was for knowledge (partial eta2 = 0.98), and the least was for perceived burden (partial eta2 = 0.71). Conclusion: A multi-component psychosocial intervention for caregivers of persons with neurocognitive disorders demonstrated a short-term efficacy in reducing their burden, depression, and anxiety, as well as improving caregivers' knowledge. However, further research is needed to investigate long-term efficacy of the intervention.

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Effects of Caregiving Status and Changes in Depressive Symptoms on Development of Physical Morbidity Among Long-Term Cancer Caregivers

Objective: Cancer caregiving burden is known to vary across the survivorship trajectory and has been linked with caregivers’ subsequent health impairment. Little is known, however, regarding how risk factors during long-term survivorship relate to vulnerability to caregivers’ health during that period. This study examined effects of caregiving status and depressive symptoms on development of physical morbidity by 5 years postdiagnosis. Method: Family caregivers (N = 491; Mage = 55.78) completed surveys at 2 (Time 1 [T1]) and 5 years (T2) after their care recipients’ cancer diagnosis. Demographic and caregiving context variables known to affect caregivers’ health were assessed at T1. Self-reported depressive symptoms and a list of physical morbid conditions were assessed at T1 and T2. Caregiving status (former, current, or bereaved) was assessed at T2. Results: Hierarchical negative binomial regression revealed that current caregivers at T2 (p = .02), but not those bereaved by T2 (p = .32), developed more physical morbid conditions between T1 and T2 compared with former caregivers, controlling for other variables. Independently, caregivers reporting either newly emerging or chronically elevated depressive symptoms at T2 (ps < .03), but not those whose symptoms remitted at T2 (p = .61), showed greater development of physical morbidity than did those reporting minimal depressive symptoms at both T1 and T2. Conclusions: Results highlight the roles of long-term caregiving demands and depressive symptoms in cancer caregivers’ premature physical health decline. Clinical attention through the long-term survivorship trajectory should be emphasized for caregivers of patients with recurrent or prolonged illness and to address caregivers’ elevated depressive symptoms.

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Anxiety and Depressive Symptoms Among Two Seriously Medically Ill Populations and Their Family Caregivers: A Comparison and Clinical Implications

Background: Anxiety and depression are common among patients with acute illness and their families. In oncology, psychosocial services addressing these symptoms are increasingly part of regular practice. Less is known about psychiatric distress among patients with acute neurological injury (ANI) and their family caregivers. To highlight this inequity in psychosocial intervention across medical services, we compared anxiety and depressive symptomatology shortly following diagnosis among patients facing incurable cancer or ANI and their family caregivers. Methods: Recruited from the same hospital, participants were patients within 8 weeks of receiving a diagnosis of incurable cancer (N = 350) and their family caregivers (N = 275; total patient/caregiver dyads = 275) and patients hospitalized in the Neuroscience ICU in the past 2 weeks (N = 81) and their family caregivers (N = 95; total dyads = 75). Participants reported anxiety and depressive symptoms using the Hospital Anxiety and Depression Scale. Symptomatology was compared across illnesses using independent samples t-tests and multiple regressions controlling for differences in sample demographics. Results: Patients with ANI (M = 6.90) reported greater anxiety symptoms than those with cancer (M = 5.31, p < .001), while caregivers for patients with ANI (M = 5.45) reported greater depressive symptoms than caregivers for patients with cancer (M = 3.81, p < .001). Results remained when controlling for demographic differences between samples. Conclusion: This is the first cross-comparison of psychiatric distress in patients and family caregivers affected by two distinct, life-threatening illnesses early in the illness trajectory. Findings support the priority of addressing psychiatric distress among patients with ANI and their family caregivers, as has been emphasized in the psychosocial oncology field.

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Feelings of burden among family caregivers of people with spinal cord injury in Turkey

Study design:The study was designed as a cross-sectional survey. Objectives: The purpose of the study was to examine the level of feelings of burden in family caregivers of people with spinal cord injury (SCI) in Turkey, and to explore its predictors. Setting: Turkey. Methods: One hundred family caregivers of people with SCI completed measures of burden of caregiving, depression, social support and physical health. The SCI participants completed a measure of functional independence. Multivariate statistics and structural equation modeling (SEM) were conducted to identify significant predictors of caregiver burden. Results: Caregiver burden was significantly related to caregivers’ feelings of depression. SEM analysis showed that social support from family and from friends predicted caregiver burden via depression. Caregivers’age, sex, educational level, physical health and household income did not significantly predict their feelings of depression or burden. Conclusions: Our findings revealed that support received from both families and friends is an important source for alleviating the depressive feelings of caregivers and, in return, their burden in the caregiving. In Turkey, high support from family members is expected and is important for psychological well-being, yet the current study showed that the support received from friends also has unique contribution to the well-being of the caregivers of persons with SCI. Overall, ourfindings highlight the importance of supportive relationships between family as well as friends for the caregivers who may have to provide lifetime care for their family member with special needs.

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Problem-solving in caregiver-counselling (PLiP Study): study protocol of a cluster randomized pragmatic trial

Background: Despite the positive evaluation of various caregiver interventions over the past 3 decades, only very few intervention protocols have been translated to delivery in service contexts. The purpose of this study is to train care counsellors of statutory long term care insurances in problem-solving and to evaluate this approach as an additional component in the statutory care counselling in Germany. Methods: A pragmatic cluster randomized controlled trial in which 38 sites with 58 care counsellors are randomly assigned to provide either routine counselling plus additional problem-solving for caregivers or routine counselling alone. The counsellor training comprises an initial 2-day training, a follow-up day after 4 months, and biweekly supervision contacts with a psychotherapist for 6 months over the phone. The agreed minimum counselling intensity is one initial face-to-face contact including a caregiver assessment and at least one telephone follow-up contact. Caregivers who are positively screened for significant strain in their role are followed up at 3 and 6 months after baseline assessment. Main outcome are caregivers’ depressive symptoms. Discussion: While it is unclear if the expected very low amount of additional counselling time is sufficient to yield any additional effects on caregiver depression, it is also unclear if the additional problem-solving component yields to synergies with routine counselling that is based on information and case management. There are different potential individual and organisational barriers to a consistent intervention delivery like gratification for participation, time for extra work or internal motivation to participate. Trial registration: (ISRCTN23635523)

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Relationship between caregiving burden and depression in caregivers of individuals with intellectual disabilities in Korea

Background: Individuals with intellectual disabilities (IWID) need intensive long-term care. Consequently, caregivers experience not only economic burdens but also tension, depression, insecurity, etc. Aim: This study aimed to provide basic data and materials for preparing policy alternatives to improve caregiver quality of life of by examining relationships between IWID caregiving burden and depression. Methods: This study involved secondary analysis of data from the 2011 Survey on the Actual Conditions of Individuals with Developmental Disabilities, conducted by the Ministry of Health and Welfare of Korea. Effects of caregivers’ characteristics, caregiving time and cost, and perceptions of time and cost, on depression were analyzed. Results: All components of caregiving burden and depression were significantly higher in the 1st grade, designating the most severe disabilities. Overall, caregiving burden tended to be higher in female caregivers, the unemployed, parents, co-residents, and people with health problems. Caregivers’ characteristics such as spouse relationship, having health problems, and perception of caregiving time and cost were associated with depression. Conclusion: Caregiving burden and depression vary depending on the characteristics of IWID and their caregivers. Services for decreasing caregiving burden may be optimized by focusing on these characteristics.

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Mindfulness training for psychological stress in family caregivers of persons with dementia: a systematic review and meta-analysis of randomized controlled trials

Caring for a relative with dementia is extremely challenging; conventional interventions may not be highly effective or easily available on some occasions. This study aimed to explore the efficacy of mindfulness training in improving stress-related outcomes in family caregivers of people with dementia using a meta-analytic review. We searched randomized controlled trials (RCT) through April 2017 from five electronic databases, and assessed the risk of bias using the Cochrane Collaboration tool. Seven RCTs were included in our review. Mindfulness interventions showed significant effects of improvement in depression (standardized mean difference: -0.58, [95% CI: -0.79 to -0.37]), perceived stress (-0.33, [-0.57 to -0.10]), and mental health-related quality of life (0.38 [0.14 to 0.63]) at 8 weeks post-treatment. Pooled evidence did not show a significant advantage of mindfulness training compared with control conditions in the alleviation of caregiver burden or anxiety. Future large-scale and rigorously designed trials are needed to confirm our findings. Clinicians may consider the mindfulness program as a promising alternative to conventional interventions.

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Influence of personality on depression, burden, and health-related quality of life in family caregivers of persons with dementia

Background: Personality may predispose family caregivers to experience caregiving differently in similar situations and influence the outcomes of caregiving. A limited body of research has examined the role of some personality traits for health-related quality of life (HRQoL) among family caregivers of persons with dementia (PWD) in relation to burden and depression. Methods: Data from a large clinic-based national study in South Korea, the Caregivers of Alzheimer's Disease Research (CARE), were analyzed (N = 476). Path analysis was performed to explore the association between family caregivers’ personality traits and HRQoL. With depression and burden as mediating factors, direct and indirect associations between five personality traits and HRQoL of family caregivers were examined. Results: Results demonstrated the mediating role of caregiver burden and depression in linking two personality traits (neuroticism and extraversion) and HRQoL. Neuroticism and extraversion directly and indirectly influenced the mental HRQoL of caregivers. Neuroticism and extraversion only indirectly influenced their physical HRQoL. Neuroticism increased the caregiver's depression, whereas extraversion decreased it. Neuroticism only was mediated by burden to influence depression and mental and physical HRQoL. Conclusions: Personality traits can influence caregiving outcomes and be viewed as an individual resource of the caregiver. A family caregiver's personality characteristics need to be assessed for tailoring support programs to get the optimal benefits from caregiver interventions.

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Caregiver profiles in dementia related to quality of life, depression and perseverance time in the European Actifcare study: the importance of social health

Objectives: To identify caregiver profiles of persons with mild to moderate dementia and to investigate differences between identified caregiver profiles, using baseline data of the international prospective cohort study Actifcare. 

Methods: A latent class analysis was used to discover different caregiver profiles based on disease related characteristics of 453 persons with dementia and their 453 informal caregivers. These profiles were compared with regard to quality of life (CarerQoL score), depressive symptoms (HADS-D score) and perseverance time. 

Results: A 5-class model was identified, with the best Bayesian Information Criterion value, significant likelihood ratio test (p < 0.001), high entropy score (0.88) and substantive interpretability. The classes could be differentiated on two axes: (i) caregivers' age, relationship with persons with dementia, severity of dementia, and (ii) tendency towards stress and difficulty adapting to stress. Classes showed significant differences with all dependent variables, and were labelled ‘older low strain’, ‘older intermediate strain’, ‘older high strain’, ‘younger low strain’ and ‘younger high strain’. 

Conclusion: Differences exist between types of caregivers that explain variability in quality of life, depressive symptoms and perseverance time. Our findings may give direction for tailored interventions for caregivers of persons with dementia, which may improve social health and reduce health care costs.

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The role of flexible goal adjustment in the effect of informal caregiving on depressive symptoms: Evidence of a large population-based longitudinal study in Germany from 2002 to 2011

Objectives: To determine the role of flexible goal adjustment in the impact of informal caregiving on depressive symptoms, using a longitudinal approach. Method: Data were gathered from the German Ageing Survey. This is a population-based longitudinal study among community-dwelling individuals aged 40 and above in Germany. Data were derived from the second (2002), third (2008) and fourth (2011) wave, drawing on 10,994 observations. Flexible goal adjustment was assessed using a scale by Brandstädter and Renner. Informal caregiving was measured by asking the individuals whether they provide informal care. Depressive symptoms were quantified by using the Center for Epidemiological Studies Depression scale. Results: Adjusting for several potential confounders, fixed effects regressions showed that the onset of informal caregiving markedly increased depressive symptoms. Furthermore, regressions revealed that this effect was significantly moderated by flexible goal adjustment. Discussion: Our results highlight the importance of informal caregiving for depressive symptoms. Furthermore, the importance of flexible goal adjustment in the relation between informal caregiving and depressive symptoms should be emphasized. Efforts to increase flexible goal adjustment might be beneficial in reducing depressive symptoms among informal caregivers.

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Caregiving and Perceived Generativity: A Positive and Protective Aspect of Providing Care?

Objectives : Although a sizable body of research supports negative psychological consequences of caregiving, less is known about potential psychological benefits. This study aimed to examine whether caregiving was associated with enhanced generativity, or feeling like one makes important contributions to others. An additional aim was to examine the buffering potential of perceived generativity on adverse health outcomes associated with caregiving. Methods : Analyses utilized a subsample of participants (n = 3,815, ages 30–84 years) from the second wave of the National Survey of Midlife Development in the United States (MIDUS). Results : Regression analyses adjusting for sociodemographic factors indicated greater negative affect and depression (p .001) and lower levels of positive affect (p <.01), but higher self-perceptions of generativity (p < .001), in caregivers compared with non-caregivers. This association remained after adjusting for varying caregiving intensities and negative psychological outcomes. Additionally, generativity interacted with depression and negative affect (p values < .05) to lessen the likelihood of health-related cutbacks in work/household productivity among caregivers. Conclusions : Results suggest that greater feelings of generativity may be a positive aspect of caregiving that might help mitigate some of the adverse health and well-being consequences of care. Clinical Implications : Self-perceptions of generativity may help alleviate caregiver burden and explain why some caregivers fare better than others.

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A longitudinal view of factors that influence the emotional well-being of family caregivers to individuals with heart failure

Objectives: Caring for community-residing patients with heart failure can affect caregivers’ emotional wellbeing. However, few studies have examined caregivers’ well-being longitudinally, or identified factors associated with positive and negative outcomes. The objective of this longitudinal cohort study was to examine changes in caregivers’ well-being over time, and to identify patient and caregiver factors associated with positive and negative outcomes. Method: Fifty caregiver/heart failure patient dyads were recruited from an acute care facility and followed in the community. All participants completed surveys at hospital admission and 3, 6 and 12 months later. Caregivers completed assessments of depression symptoms and positive affect and standardized measures to capture assistance provided, mastery, personal gain, social support, participation restriction, and patients’ behavioral and psychological symptoms. From patients, we collected demographic characteristics and health-related quality of life. Individual Growth Curve modelling was used to analyze the data. Results: Caregivers’ negative and positive emotions remained stable over time. Depression symptoms were associated with higher participation restriction in caregivers. Positive affect was associated with more personal gain and more social support. Patients’ health-related quality of life and their behavioral and psychological symptoms were not significantly associated with caregivers’ emotional outcomes. Conclusion: Interventions should be offered based on caregivers’ needs rather than patients’ health outcomes, and should focus on fostering caregivers’ feelings of personal gain, assisting them with securing social support, and engaging in valued activities.

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A Systematic Review of Psychosocial Interventions to Cancer Caregivers

Objective: To systematically review the effect of psychosocial interventions on improving QoL, depression and anxiety of cancer caregivers. Methods: We conducted a systematic review of psychosocial interventions among adult cancer caregivers published from 2011 to 2016. PsycINFO, PubMed, Proquest, Cochrane Library, Embase, Applied Social Sciences Index and Abstracts (ASSIA), Cumulative Index to Nursing and Allied Health Literature, Social Sciences Citation Index (SSCI) and EBSCO, China National Knowledge Infrastructure (CNKI) and WANFANG were searched. Inclusion criteria were: randomized controlled trails (RCTs); psychosocial intervention to cancer caregivers; psychosocial health indicators including quality of life, depression or anxiety. Results: 21 studies out of 4,666 identified abstracts met inclusion criteria, including 19 RCTs. The intervention modes fell into the following nine categories: family connect intervention, self-determination theory-based intervention (SDT), cognitive behavioral therapy (CBT), emotion-focused therapy (EFT), comprehensive health enhancement support system (CHESS), FOCUS programme, existential behavioral therapy (EBT), telephone interpersonal counseling (TIP-C), problem-solving intervention (COPE). Conclusion: paired-intervention targeting self-care and interpersonal connections of caregivers and symptom management of patients is effective in improving quality of life and alleviating depression of cancer caregivers while music therapy is helpful for reducing anxiety of cancer caregivers.

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Psychological health of caregivers and association with functional status of stroke patients

Objective: Stroke does not only affect the physical state of patients but also the emotional state of their relatives, most effectively their caregivers. The study aims to examine the mood of caregivers experienced with care for patients with stroke who are highly dependent on the assistance and also to establish the relationship between the emotional state of caregivers and the severity of disability of the patients.

Methods: This study contained a total of 76 patients with sufficient cognitive functions and severe physical disabilities with hemiplegia caused by a cerebrovascular accident and their caregivers and 94 controls. The functional state of patients was assessed by the Barthel Index (BI). Furthermore, emotional state of the caregivers was assessed by the Hospital Anxiety and Depression Scale (HADS) and their life quality was assessed by the SF36 Health Survey.

Results: The mean anxiety (9.73 ± 4.88) and depression rates (9.81 ± 5.05) in the caregivers were significantly higher than those in controls (p<0.001, respectively). Significant impairments were observed in both their mental and physical health. Regression analysis also showed a significant negative correlation between the BI scores and the HADS scores.

Conclusion: Caregivers had an impaired emotional state and the level of their anxiety was associated with the severity of functional disability of the patients. Therefore, the support provided to the caregiver might be influential on the functional recovery of the patients.

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Determinants of depression in primary caregivers of disabled older relatives: a path analysis

Background: Despite the large literature analysing factors related to depression, several factors such as caregiving obligation and the interrelationships among the different variables relating to depression have been little studied. The current study aimed to analyse the effect of caregiving obligation (beliefs regarding obligation and social pressure) on depression, and the mediating effects of perceived burden on the relationship between stressors and depression, in primary caregivers of older relatives.

Methods: Cross-sectional study design. A probabilistic sample of caregivers from Spain (N = 200) was used. The data collection was conducted in 2013 through structured interviews in the caregivers’ homes. The measures included sense of obligation for caregiving, perceived burden, stressors and depression.

Results: Depression had a direct and positive association with perceived burden, behavioural problems, and social pressure, and it was indirectly related through perceived burden to behavioural problems, independence for the activities of daily living and beliefs of obligation. 

Conclusions Our results support the multidimensional concept of obligation, suggesting the existence of both an external obligation (social pressure) and an internal obligation (beliefs of obligation); (b) our findings support the hypothesis that external obligation is related to negative caregiving consequences, while internal obligation protects from these consequences; and (c) our findings support the partial mediation of stressors on depression by perceived burden. The relevance of the research to clinical practice includes the importance of understanding the perceived obligation of caregiving related to both internal and external sources of obligation.

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"I Don't Believe in Leading a Life of My Own, I Lead His Life": A Qualitative Investigation of Difficulties Experienced by Informal Caregivers of Stroke Survivors Experiencing Depressive and Anxious Symptoms

Objectives: Health and social care services are increasingly reliant on informal caregivers to provide long-term support to stroke survivors. However, caregiving is associated with elevated levels of depression and anxiety in the caregiver that may also negatively impact stroke survivor recovery. This qualitative study aims to understand the specific difficulties experienced by caregivers experiencing elevated symptoms of anxiety and depression.; Methods: Nineteen semi-structured interviews were conducted with caregivers experiencing elevated levels of depression and anxiety, with a thematic analysis approach adopted for analysis.; Results: Analysis revealed three main themes: Difficulties adapting to the caring role; Uncertainty; and Lack of support.; Conclusions: Caregivers experienced significant difficulties adapting to changes and losses associated with becoming a caregiver, such as giving up roles and goals of importance and value. Such difficulties persisted into the long-term and were coupled with feelings of hopelessness and worry. Difficulties were further exacerbated by social isolation, lack of information and poor long-term health and social care support.; Clinical Implications: A greater understanding of difficulties experienced by depressed and anxious caregivers may inform the development of psychological support targeting difficulties unique to the caring role. Improving caregiver mental health may also result in health benefits for stroke survivors themselves.

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The relationship between caregiver burden and depressive symptoms in Ontario home care clients

The onset of depressive symptoms is common in home care clients and their caregivers. Understanding the experience of the informal caregiver can assist clinicians in providing services to maximize the well-being of both the client and their caregivers. The objectives of this article are to examine risk factors for the development of depressive symptoms. A longitudinal analysis design was completed for clients with 2+ assessments. The development of depressive symptoms was defined as a Depression Rating Scale score of 3+ on re-assessment. The results-overall, 10.7% of clients experienced new depressive symptoms and clients with a caregiver who was feeling distressed, angry, or depressed were 45% more likely to develop symptoms.

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Long-term Care Provision and the Well-Being of Spousal Caregivers: An Analysis of 138 European Regions

Objectives: The individual burden of caring for one's relatives not only depends on care characteristics but is also related to contextual factors. The objective of this study is to determine whether regional formal long-term care provision is linked to the well-being of spousal caregivers introducing the concept of "control" as central pathway to explain this link.; Method: We applied multilevel analysis using data from the Survey of Health, Ageing and Retirement in Europe (SHARE) from over 29,000 Europeans and 1,800 spousal caregivers located in 138 regions in 11 countries to analyze the effects of regional contexts on caregiver well-being. The provision of formal care in a region was measured by the number of long-term care beds in nursing and residential homes among the older population.; Results: We found that spousal caregivers' well-being, measured in terms of life satisfaction, loneliness, and depression, was positively linked to the regional availability of formal care, which is partly due to higher perceived control in regions with more formal care provision.; Discussion: Our results suggest that formal care supply is essential not only for care recipients but also for caregivers: perceived alternatives to the private care arrangement go along with greater well-being of informal caregivers.

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Quality of Life Trajectories Among Stroke Survivors and the Related Changes in Caregiver Outcomes: A Growth Mixture Study

Objectives: To identify the distinct quality of life (QOL) trajectories among stroke survivors, and to evaluate the associations with their caregivers' burden, anxiety, and depression.; Design: This was a longitudinal dyadic study.; Settings: Stroke survivors and their informal caregivers were enrolled upon discharge from several rehabilitation hospitals, and they were followed during this multisite longitudinal study.; Participants: The stroke survivors (N=405, mean age=70.7y) included older adult men (52.0%), most of whom (80.9%) had had ischemic strokes. The caregivers (n=244, mean age=52.7y) included mostly women (65.2%), most of whom were the survivors' children (50.0%) or spouses (36.1%).; Interventions: Not applicable.; Main Outcome Measures: Latent growth mixture modeling was used to identify the distinct QOL trajectories among the stroke survivors over the course of 12 months of recovery. The longitudinal associations between the stroke survivor QOL trajectories and the caregivers' burden, anxiety, and depression were evaluated. A multinomial regression was then used to identify the predictors of the various survivor QOL trajectories.; Results: Three distinct survivor QOL trajectories were identified: high and slightly improving QOL, moderate and slightly worsening QOL, and markedly improving QOL. The caregivers' burden, anxiety, and depression mirrored the survivors' QOL trajectories. In the multinomial models, an older survivor age, hemorrhagic stroke, lower education, and coexisting chronic obstructive pulmonary disease or thyroid disease were significantly associated with a moderate and slightly worsening QOL trajectory. Women and blindness were associated with a markedly improving QOL survivor trajectory.; Conclusions: A survivor's QOL trajectory after a stroke was associated with their caregiver's burden, anxiety, and depression. Those survivors belonging to the moderate and slightly worsening QOL trajectory and their caregivers, in particular, need special care, because they are at risk for the worst outcomes.

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Population Characteristics and Needs of Informal Caregivers Associated With the Risk of Perceiving a High Burden: A Cross-Sectional Study

This study explored the population characteristics and needs of informal caregivers reporting a low or high burden. A cross-sectional study was conducted in the Netherlands to explore the associations between the characteristics and needs of informal caregivers and the burden they perceive and to assess the variance in perceived burdens that is explained by these variables. Three thousand sixty-seven adult informal caregivers and 1936 senior informal caregivers participated, almost 15% of whom perceived a high burden. Particularly caregivers in the 40 to 54 age group perceived a high burden, while caregivers with an intermediate educational level reported a low burden. Higher burden was also reported by caregivers who spent more time on the care provision tasks, had a high level of depressive symptoms, or reported loneliness. The explored variables seem to be important to explain caregiver burden. Longitudinal research is warranted to establish the causal directions of these associations.

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More than one in four sandwich carers report symptoms of mental ill-health

Sandwich carers – those who care for both sick, disabled or older relatives and dependent children – are more likely to report symptoms of mental ill-health, feel less satisfied with life, and struggle financially compared with the general population.

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Predictors of depression and anxiety among caregivers of hospitalised advanced cancer patients

Introduction: Cancer is a chronic disease that requires long-term treatment and care. Caregivers of cancer patients are at greater risk of developing depression than the general population. The effect of caregivers' cognitive flexibility on depression and anxiety has not been studied. We aimed to investigate the social characteristics, burden level and cognitive flexibility of caregivers of advanced cancer patients, and determine the relationship between these factors and depression and anxiety. We hypothesised that factors such as cognitive flexibility and caregiver burden level significantly predict anxiety and depression.; Methods: The study included 69 primary informal caregivers of cancer patients of Stage 4 severity. Methods utilised included diagnostic semi-structured interviews, Beck Depression Inventory (BDI), Beck Anxiety Inventory (BAI), Zarit Caregiver Burden Inventory and cognitive flexibility inventory.; Results: BDI scores were found to be statistically higher in caregivers who cared for men compared to those who cared for women (20.44 ± 2.06 vs. 13.29 ± 1.81; t = 2.60; p = 0.01). BDI mean scores were statistically lower in caregivers who received help with caregiving compared to those who did not (t = 2.62; p = 0.01). Cognitive flexibility level, burden level, and lack of social support were found to be predictors of caregiver depression.; Conclusion: The study showed that individuals with low cognitive flexibility levels are more likely to have depressive and anxiety symptoms. Based on our findings, we opine that evaluations of caregivers' cognitive strategies and social support are needed to determine the risk of depression in caregivers of cancer patients.

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Valued activities and informal caregiving in stroke: a scoping review

Purpose: Map the literature about valued activities and informal caregiving post stroke and determine the nature, extent, and consequences of caregivers' activity changes.; Methods: A scoping review was undertaken, searching Pubmed, Cinahl, PsycInfo, and Google Scholar. Two researchers independently identified relevant articles, extracted study characteristics and findings, and assigned codes describing the topics and outcomes. Using thematic analysis, the main study topics and study outcomes were described.; Results: The search yielded 662 studies, 30 of which were included. These were mainly qualitative and cross-sectional studies assessing caregivers' activity changes and related factors, or exploring caregivers' feelings, needs and strategies to deal with their activity challenges. Although caregivers often lost their social and leisure activities, which made them feel unhappy and socially isolated, we found no studies about professional interventions to help caregivers maintain their activities. Over the years, caregivers' activity levels generally increased. However, some caregivers suffered from sustained activity loss, which, in turn, relates to depression.; Conclusion: Loss of valued activities is common for stroke caregivers. Although high-level evidence is lacking, our results suggest that sustained activity loss can cause stroke caregivers to experience poor mental health and wellbeing. Suggestions to help caregivers maintain their valued activities are presented. Implications for rehabilitation Not only stroke survivors but also their informal caregivers tend to lose their valued activities, such as their social and leisure activities. Although many caregivers manage to resume their valued activities over time, others suffer from sustained activity loss up to at least two years post stroke. Loss of valued activities in stroke caregivers can result in lower levels of wellbeing, depression, and social isolation. Rehabilitation professionals should screen stroke caregivers for activity loss and assist them in resuming their valued activities and maintaining their social contacts.;

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Prevalence and predictors of psychosocial problems in informal caregivers of older cancer survivors - A systematic review: Still major gaps in current research

Despite the abundance of studies concerning caring for patients with cancer, less is known about caring for an older cancer survivor (≥65 years). We aimed to systematically gather literature about the psychosocial well-being of caregivers of older cancer survivors and to identify possible risk factors for developing psychosocial problems. Fourteen articles met the following inclusion criteria: articles about (a) cancer, (b) informal caregivers, (c) older survivors and a (d) curative setting. After critical appraisal, nearly all were considered to be of moderate-to-strong quality. This results mainly from the specific study population, the valid and reliable measurement instruments and the appropriate statistical methods used in the articles. Main outcomes were burden, depression, anxiety, self-esteem, distress, communication issues, stress and QoL. For all these outcomes, measurement instruments and timing of measurements vary. Also, the results on studied predictors vary widely or not all of them were described in the reviewed articles. There seems to be a higher prevalence of distress, lower QoL and more anxiety in informal caregivers of older cancer survivors compared with the general population, but all were understudied. Based on these results and more focused future research, specific and qualitative support for this group of caregivers can be developed.

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Efficacy of a telephone outcall program to reduce caregiver burden among caregivers of cancer patients [PROTECT]: a randomised controlled trial

Background: Informal caregivers provide extended support to people with cancer but they receive little support from the health care system to assist them in their caring role. The aim of this single-blind, multi-centre, randomised controlled trial was to test the efficacy of a telephone outcall program to reduce caregiver burden and unmet needs, and improve psychological well-being among cancer caregivers, as well as evaluating the potential impact on patient outcomes.; Methods: Cancer patient/caregiver dyads (N = 216) were randomised to a telephone outcall program (n = 108) or attention control group (n = 108). The primary outcome was self-reported caregiver burden. Secondary endpoints included depressive symptoms, unmet needs, self-esteem, self-empowerment, and health literacy. Data were collected at baseline and at both 1 and 6 months post-intervention. An intention to treat analysis was performed.; Results: The intervention had no effect on the primary outcome (caregiver burden), but reduced the number of caregiver unmet needs (intervention group baseline, mean = 2.66, 95% confidence interval (CI) [1.91-3.54]; intervention group 1 month post intervention, mean = 0.85, 95%CI [0.42-1.44]; control group baseline, mean = 1.30 95%CI [0.80-1.94], control group 1 month post intervention, mean = 1.02 95%CI [0.52-1.69]; p = 0.023). For caregivers at risk for depression, the intervention had a significant effect on caregivers' confidence in having sufficient information to manage their health (p = 0.040). No effects were found for patients' depressive symptoms, unmet needs, self-empowerment, and other health literacy domains.; Conclusions: While caregiver burden was not reduced, the outcall program was effective in reducing unmet needs in caregivers. Provision of cancer information and support via a telephone service may represent a feasible approach to reducing unmet needs among cancer caregiver populations.; Trial Registration: ACTRN12613000731796 ; prospectively registered on 02/07/2013.;

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Caregiver Burden, Care Recipient Depressive Symptomology, and Social Exchange: Does Race Matter?

Informal caregivers play a vital role in supporting seriously ill patients. However, informal caregiving is burdensome and can lead to negative health outcomes for the caregiver and the care recipient. The study's aim was to evaluate relationships among caregiver burden, care recipient depressive symptomology, and race. Guided by the social exchange perspective, we examined cross-sectional dyadic data from the National Long-Term Care Survey (N = 1279). Using ordinal logistic regression, we found that higher caregiver-reported objective burden was associated with higher care recipient depressive symptoms ( P < .05), an association that was stronger for blacks. Interestingly, despite significant levels of objective burden, there was an association between lower depressive symptoms in black care recipients when there was an exchange of the social good "helpful company" with a caregiver. These findings illustrate the importance of supporting reciprocal exchange as a promising component of maintaining balanced caregiver-care recipient relationships among black older adults and their informal caregivers.

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The Effectiveness of Mindfulness- and Acceptance-Based Interventions for Informal Caregivers of People With Dementia: A Meta-Analysis

Background and Objectives: The application of mindfulness- and acceptance-based interventions (MABIs) for informal caregivers of people with dementia (PwD) is relatively novel, and the current state of the evidence base is unclear. This meta-analysis examined the effectiveness of MABIs on reducing symptoms of depression and burden in informal caregivers of PwD. The quality of included studies was evaluated and moderator variables explored.; Research Design and Methods: A literature search of six electronic databases (PsycARTICLES, PsycINFO, MEDLINE Complete, SCOPUS, Web of Science, and ProQuest) was conducted from the first available date to 20 December 2016. Inclusion criteria involved studies that quantitatively investigated the impact of MABIs on depression and/or burden in informal caregivers of PwD.; Results: Twelve studies, providing data on 321 caregivers, were included. Most used mindfulness-based stress reduction and were conducted in the United States. The average attrition among participants was 15.83%. The pre-post effect of MABIs was large for depression and moderate for burden. These effects were largely maintained at follow-up. Significant heterogeneity of effect sizes was observed, with no significant moderators identified. Study quality varied from very poor to moderately good.; Discussion and Implications: The low attrition and moderate to large effects suggest that MABIs are acceptable and beneficial for informal caregivers of PwD. The lack of significant moderators could advocate services using more cost-effective forms of MABIs. Further higher-quality research is needed to improve the robustness of the evidence base and enable a meta-analysis to thoroughly examine and quantify moderator variables.;

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Factors associated with symptoms of depression among informal caregivers of people with systemic sclerosis: a cross-sectional study

Purpose: Our study aimed to identify caregiver characteristics (gender, age, occupational status, educational attainment, relation to care recipient), care recipient characteristics (age, disease subtype), and caregiving factors (hours of care, perceived caregiving burden) associated with symptoms of depression among informal caregivers of persons with systemic sclerosis (also known scleroderma). as Materials and methods: A questionnaire was developed and administered online from December 2016 to June 2017 to informal caregivers of people with scleroderma, including the Patient Health Questionnaire-9 to assess depressive symptoms. Multiple linear regression was used to identify factors associated with depressive symptoms.; Results: Caregivers (n = 202) were 60.9% male. Average age was 57.2 years (standard deviation = 14.4 years). Most caregivers were partners (72.3%), children (11.9%), or parents (7.4%), of care recipients. Self-reported caregiving burden (standardized regression coefficient [Formula: see text] = 0.54, p < 0.001) and hours of care per week ([Formula: see text] = 0.17, p = 0.005) were significantly associated with greater symptoms of depression.; Conclusions: Depressive symptoms were primarily associated with caregiving burden among a sample of scleroderma caregivers. There is need to develop interventions targeting caregivers in scleroderma. Rehabilitation professionals should consider the specific needs of scleroderma caregivers and should provide or refer to support services as appropriate. Implications for Rehabilitation Most people diagnosed with scleroderma are cared for by an informal caregiver and the majority of these caregivers experience mild symptoms of depression. For caregivers that experience moderate to severe symptoms of depression, the ability to provide care to a loved one with scleroderma may be more difficult. Rehabilitation professionals should be aware of the burden faced by caregivers of persons with scleroderma and provide support services or referrals as appropriate.

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Mental health and reactions to caregiving among next of kin of older people (65+) with multi-morbidity discharged home after hospitalization

Background: Older people with multi-morbidity are major users of healthcare and are often discharged from hospital with ongoing care needs. This care is frequently provided by informal caregivers and the time immediately after discharge is challenging for caregivers with new and/or additional tasks, resulting in anxiety and stress.; Aim: This study aimed to describe mental health, with particular reference to anxiety and depression and reactions to caregiving, and to investigate any associations between the two, in next of kin of older people with multi-morbidity after hospitalisation. It also aimed to explore the association between the demographic characteristics of the study group and mental health and reactions to caregiving.; Methods: This was a cross-sectional questionnaire study using the Hospital Anxiety and Depression Scale and the Caregiver Reaction Assessment. The study group consisted of 345 next of kin of older people (65+) with multi-morbidity discharged home from 13 medical wards in Sweden. Data were analysed using descriptive and analytical statistics. To identify whether reactions to caregiving and next of kin characteristics were associated with anxiety and depression, a univariate logistic regression analysis was performed.; Results: More than one quarter of respondents showed severe anxiety and nearly one in 10 had severe depressive symptoms. The frequencies of anxiety and depression increased significantly with increased negative reactions to caregiving and decreased significantly with positive reactions to caregiving. Regarding caregiving reactions, the scores were highest for the positive domain Caregiver esteem, followed by the negative domain Impact on health. Women scored significantly higher than men on Impact on health and spouses scored highest for Impact on schedule and Caregiver esteem.; Conclusions: Nurses and other healthcare professionals may need to provide additional support to informal caregivers before and after discharging older people with significant care needs from hospital. This might include person-centred information, education and training.

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Correlates of depression in caregivers of Ultra-Orthodox frail older adults

Depression is the most frequent negative health outcome among informal caregivers. The aims of the current study were (a) to assess the level of depression, (b) to explore associations among care recipients' characteristics, caregivers' characteristics, situational factors, and depression among Ultra-Orthodox Jewish (UOJ) caregivers. A total of 112 (44 men and 68 women) UOJ primary caregivers of frail older adults were interviewed face-to-face in their homes, using valid and reliable measures. Participants reported a notable depressive symptomatology. Three variables emerged as significant predictors of caregiver depression: higher external control (chance), being a spouse, and lower levels of social support. External locus of control, being a spouse, and social support were found to be highly important factors for explaining depression among UOJ caregivers. Resources should be allocated to target spousal caregivers with lower levels of social support and a greater sense of external locus of control in order to alleviate their depressive symptomatology.

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Coping strategies and psychological distress in caregivers of patients with Amyotrophic Lateral Sclerosis (ALS)

Background: Amyotrophic lateral sclerosis (ALS) causes distress in caregivers. The present study aims to examine the association between coping strategies and psychological distress in caregivers of ALS patients.; Methods: Coping strategies were assessed in 96 ALS informal caregivers by means of the Coping Inventory for Stressful Situations. Data about caregivers' demographic characteristics, levels of burden, depression and anxiety (psychological distress) were also gathered by standardised questionnaires. Patients' clinical, cognitive and behavioural disturbances were evaluated by ALS specific assessment tools.; Results: Sequential logistic regression analysis showed that emotion-oriented coping strategy was significantly associated with high levels of depressive (p < 0.01) and anxiety (p < 0.05) symptoms and high levels of burden (p < 0.05), after controlling for all other variables. Moreover, a significant relationship of patients' functional dependence levels with burden experienced by caregivers was observed. No relationships were detected between task-oriented and avoidance-oriented coping strategies and caregivers' levels of psychological distress.; Conclusions: The present study supported the mediating effects of coping strategies on intensity of burden, depression and anxiety experienced by ALS caregivers. These findings suggest that interventions aimed at reducing utilisation of maladaptive coping strategies may improve well-being in ALS caregivers, and, possibly, management of symptoms in ALS patients.

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Web-Based Interventions to Improve Mental Health, General Caregiving Outcomes, and General Health for Informal Caregivers of Adults With Chronic Conditions Living in the Community: Rapid Evidence Review

Background: Most adults with chronic conditions live at home and rely on informal caregivers to provide support. Caregiving can result in negative impacts such as poor mental and physical health. eHealth interventions may offer effective and accessible ways to provide education and support to informal caregivers. However, we know little about the impact of Web-based interventions for informal caregivers of community-dwelling adults with chronic conditions.; Objective: The purpose of this rapid evidence review was to assess the impact of Web-based interventions on mental health, general caregiving outcomes, and general health for informal caregivers of persons with chronic conditions living in the community.; Methods: A rapid evidence review of the current literature was employed to address the study purpose. EMBASE, MEDLINE, PsychInfo, CINAHL, Cochrane, and Ageline were searched covering all studies published from January 1995 to July 2016. Papers were included if they (1) included a Web-based modality to deliver an intervention; (2) included informal, unpaid adult caregivers of community-living adults with a chronic condition; (3) were either a randomized controlled trial (RCT) or controlled clinical trial (CCT); and (4) reported on any caregiver outcome as a result of use or exposure to the intervention.; Results: A total of 20 papers (17 studies) were included in this review. Study findings were mixed with both statistically significant and nonsignificant findings on various caregiver outcomes. Of the 17 included studies, 10 had at least one significant outcome. The most commonly assessed outcome was mental health, which included depressive symptoms, stress or distress, and anxiety. Twelve papers examined the impact of interventions on the outcome of depressive symptoms; 4 found a significant decrease in depressive symptoms. Eight studies examined the outcome of stress or distress; 4 of these found a significant reduction in stress or distress as a result of the intervention. Three studies examined the outcome of anxiety; 2 of these found significant reductions in anxiety. Other significant results of the interventions were seen in the outcomes of caregiver gain (ie, positive aspects of caregiving), knowledge, bonding, reduction of anger-hostility, and negative mood. Based on this review, it is not possible to determine which interventions were most effective since studies differed in their design, sample, and intervention. Study results suggest that Web-based interventions may result in reduced depressive symptoms, anxiety, and stress or distress among informal caregivers of adults with chronic conditions in the community.; Conclusions: This is the first review assessing the impact of Web-based technologies on mental health, general caregiving outcomes, and general health for caregivers of adults with chronic conditions living in the community. Further rigorous research is needed that includes adequately powered studies examining the critical components of the intervention and the dosage needed to have an effect.

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Associations between the psychological health of patients and carers in advanced COPD

Objective: Anxiety and depression are highly prevalent in patients with COPD and their informal carers, and associated with numerous risk factors. However, few studies have investigated these in primary care or the link between patient and carer anxiety and depression. We aimed to determine this association and factors associated with anxiety and depression in patients, carers, and both (dyads), in a population-based sample.; Materials and Methods: This was a prospective, cross-sectional study of 119 advanced COPD patients and their carers. Patient and carer scores ≥8 on the Hospital Anxiety and Depression Scale defined symptoms of anxiety and depression, χ2 tests determined associations between patient and carer symptoms of anxiety/depression, and χ2 and independent t-tests for normally distributed variables (otherwise Mann-Whitney U tests) were used to identify other variables significantly associated with these symptoms in the patient or carer. Patient-carer dyads were categorized into four groups relating to the presence of anxious/depressive symptoms in: both patient and carer, patient only, carer only, and neither. Factors associated with dyad symptoms of anxiety/depression were determined with χ2 tests and one-way analysis of variance for normally distributed variables (otherwise Kruskal-Wallis tests).; Results: Prevalence of symptoms of anxiety and depression was 46.4% (n=52) and 42.9% (n=48) in patients, and 46% (n=52) and 23% (n=26) in carers, respectively. Patient and carer symptoms of anxiety/depression were significantly associated. Anxious and depressive symptoms in the patient were also significantly associated with more physical comorbidities, more exacerbations, greater dyspnea, greater fatigue, poor mastery, and depressive symptoms with younger age. Symptoms of carer anxiety were significantly associated with being female and separated/divorced/widowed, and depressive symptoms with younger age, higher educational level, and more physical comorbidities, and symptoms of carer anxiety and depression with more unmet support needs, greater subjective caring burden, and poor patient mastery. Dyad symptoms of anxiety/depression were significantly associated with greater patient fatigue.; Conclusion: Symptoms of anxiety and depression in COPD patients and carers are significantly associated. Given their high prevalence, considerable impact on mortality, impact on quality of life and health care use, and associations with each other, screening for and addressing patient and carer anxiety and depression in advanced COPD is recommended.

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Balancing satisfaction and stress: carer burden among White and British Asian Indian carers of stroke survivors

Objectives: This paper presents the findings of a qualitative study exploring White and British Indian informal stroke carers' experiences of caring, factors contributing to their stress, and strategies used to overcome stress.; Design: A qualitative approach involving in-depth interviews was used to explore informal carers' experiences of caring for stroke survivors and the stress of caring at one and three to six months from the onset of stroke. Interviewers bilingual in English and Gujarati or Punjabi conducted interviews with carers. Socio-demographic data of carers and stroke survivors were collected at one, and three to six months by dedicated stroke research nurses.; Results: A total of 37 interviews with carers caring for stroke survivors with a wide range of physical and mental impairments were completed. A majority of carers had assumed the task of caring within a few weeks of the stroke. Irrespective of ethnicity, carers' emotional and physical well-being was undermined by the uncertainty and unpredictability of caring for stroke survivors, and meeting their expectations and needs. The strain of managing social obligations to care was common to all carers irrespective of gender and ethnicity, but the higher levels of anxiety and depression reported by Indian British female carers appeared to stem from the carers' pre-existing physical ailments, their cultural and religious beliefs, and household arrangements. Carers' strain in extended households was exacerbated by the additional responsibility of caring for other dependent relatives.; Conclusion: Since the role of carers is clearly indispensable in the successful rehabilitation of survivors, it is vital to ensure that their well-being is not undermined by a lack of information and training, and that their need for professional support is prioritised.

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The effect of Liver Transplantation on the quality of life of the recipient's main caregiver - a systematic review

Liver transplantation ( LT) is a transformative, life-saving procedure with life-long sequale for patients and their caregivers. The impact of LT on the patient's main caregiver can be underestimated. We carried out a systematic review of the impact of LT on the Health-Related Quality of Life ( HRQL) of LT patients' main caregivers. We searched 13 medical databases from 1996 to 2015. We included studies with HRQL data on caregivers of patients following LT then quality assessed and narratively synthesized the findings from these studies. Of 7076 initial hits, only five studies fell within the scope of this study. In general, they showed caregiver burden persisted in the early period following LT. One study showed improvements, however, the other four showed caregiver's levels of stress, anxiety and depression, remained similar or got worse post- LT and remained above that of the normal population. It was suggested that HRQL of the patient impacted on the caregiver and vice versa and may be linked to patient outcomes. No data were available investigating which groups were at particular risk of low HRQL following LT or if any interventions could improve this. The current information about LT caregivers' needs and factors that impact on their HRQL are not adequately defined. Large studies are needed to examine the effects of LT on the patients' family and caregivers to understand the importance of caregiver support to maximize outcomes of LT for the patient and their caregivers. 

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Prolonged grief disorder and depression are distinct for caregivers across their first bereavement year

Background: Prolonged grief disorder (PGD) and depression are recognized as distinct emotional-distress disorders for bereaved family caregivers. However, this distinction has been mostly validated in cross-sectional studies, neglecting the dynamic characteristics of bereaved caregivers' emotional distress. Objective: To validate the distinction between symptoms of PGD and depression across the first bereavement year for family caregivers of terminally ill cancer patients. Methods: In this descriptive, longitudinal study of 394 bereaved Taiwanese family caregivers, we measured symptoms of PGD and depression by the Prolonged Grief-13 and Center for Epidemiologic Studies Depression (CES-D) scales at 6 and 13 months postloss, respectively. Agreement between cases of PGD and severe depressive symptoms (CES-D score ≥ 16) was analyzed by Cohen's kappa. Structural distinctiveness was longitudinally examined using confirmatory bifactor modeling. Results: Agreement was poor between cases of PGD and severe depressive symptoms at 6 and 13 months postloss (kappa = .16 [confidence interval = .09, .22] and .12 [confidence interval = .03, .19], respectively). Symptoms of PGD and depression shared a general factor, but were distinct as shown by their significant specific factor loadings at 6 and 13 months postloss. Confirmatory bifactor models showed structural invariance (confirmatory fit index difference < .01 and χ2 difference P > .05) between 6 and 13 months postloss. Conclusion: Symptoms of PGD and depression were confirmed as distinct across the first year of bereavement. Health care professionals should recognize early in bereavement that symptoms of PGD and depression are distinct, identify high-risk groups, and provide care tailored to caregivers' unique needs to facilitate recovery from bereavement-related emotional-distress disorders. 

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Underestimated caregiver burden by cancer patients and its association with quality of life, depression and anxiety among caregivers

This study examined how patients with cancer estimate caregiver burden (CB) and the association between their underestimation of CB and their caregivers' self‐ratings of their quality of life (CQOLC‐K; Korean version of the Caregiver Quality of Life Index‐Cancer), depression and anxiety (Korean version of the Hospital Anxiety and Depression Scale). Participants consisted of 990 patient‐caregiver dyads recruited from a nationwide cross‐sectional survey conducted in South Korea. Medical baseline data were retrieved from the hospital information systems of the participating centres. The patients with cancer who underestimated CB ranged from 18.62% (for physical CB) to 23.33% (for social CB). They had less advanced cancer, a lower income, were the caregiver's spouse, reported higher levels of family avoidance of communication about cancer, and had female caregivers. The patients' underestimation of CB was significantly related to lower CQoL and higher levels of caregiver depression and anxiety. The current study provides empirical evidence for the link between the underestimation of CB by patients with cancer and compromised caregiving experiences of cancer caregivers. Open family communication about cancer was discussed as one of several practical strategies for decreasing patients' underestimation of CB.

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Hope as determinant for psychiatric morbidity in family caregivers of advanced cancer patients

Objective: Home care of advanced cancer patients often has adverse effects on physical and mental health of family caregivers. Little is known about the long-term effects of continuous caregiving on mental health as compared with the effects of bereavement. The objectives of this study were to describe the course of psychiatric morbidity in family caregivers over time, to identify the impact of the patients' death on caregivers, and to explore possible predictor variables for psychiatric morbidity. Methods: This multi-institutional, prospective study included 80 family caregivers of 80 advanced cancer patients for baseline and 9 months follow-up assessment. Possible psychiatric disorders (ie, depression, anxiety, posttraumatic stress disorder, and alcohol abuse/dependence) as well as potentially predictive factors (ie, sociodemographic factors, burden, hope, and coping mechanisms) were assessed. Results: Follow-up assessment was conducted on average 9.2 months (±2.9) after baseline assessment. Prevalence rates of anxiety and posttraumatic stress disorder decreased significantly over time, whereas depression and alcoholism remained stable. Bereavement was experienced by 53% of caregivers in the follow-up period. The patients' death had no influence on psychiatric morbidity at follow-up. Predictors for the development of a psychiatric disorder varied according to condition, with hope and emotion-oriented coping identified as important influences, especially for anxiety and depression. Conclusion: Family caregivers with certain psychiatric disorders might need targeted psychosocial support to ensure their mental well-being and prevent long-term disability. Supporting hope and functional coping strategies early after the patient's diagnosis might limit development and extent of psychiatric morbidity. 

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Reduced mortality rates among caregivers: Does family caregiving provide a stress-buffering effect?

Multiple studies have confirmed a seemingly paradoxical finding that family caregivers have lower mortality rates than comparable samples of noncaregivers. Caregivers are often also found to report more symptoms of depression and higher stress levels, but psychological distress and mortality are rarely examined in the same study. This study tests a possible mechanism for the mortality effect by applying a theoretical model that posits psychological and physiological stress-buffering benefits from prosocial helping behaviors. Participants in the population-based REasons for Geographic and Racial Differences in Stroke (REGARDS) study included 3,580 family caregivers who were individually matched to 3,580 noncaregivers on 15 demographic, health history, and health behavior variables using a propensity score matching algorithm. Baseline measures of depressive symptoms and perceived stress levels were also collected. The results indicated that caregivers reported significantly more depressive symptoms and higher perceived stress levels than propensity-matched noncaregivers (ps < .0001). However, consistent with our previous analysis (Roth et al., 2013), an analysis of 7-year survival rates showed that caregivers had a 16.5% lower mortality rate than noncaregivers (hazard ratio = 0.835, 95% CI = 0.719, 0.970). Significant caregiving*psychological distress interaction effects supported the stress-buffering hypothesis. Both depressive symptoms and perceived stress scores were significant predictors of mortality for the matched noncaregivers (ps < .0001), but not for the caregivers (ps > .49). Family caregiving appears to be similar to other prosocial helping behaviors in that it provides stress-buffering adaptations that ameliorate the impact of stress on major health outcomes such as mortality. (PsycINFO Database Record 

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The predictive factors for perceived social support among cancer patients and caregiver burden of their family caregivers in Turkish population

Objectives: We aimed to identify the predictive factors for the perceived family social support among cancer patients and caregiver burden of their family caregivers. Methods: Participants were 302 cancer patients and their family caregivers. Family social support scale was used for cancer patients, burden interview was used for family caregivers.All subjects also completed Beck depression invantery. The related socio-demographical factors with perceived social support (PSS) and caregiver burden were evaluated by correlation analysis. To find independent factors predicting caregiver burden and PSS, logistic regression analysis were conducted. Results: Depression scores was higher among patients than their family caregivers (12.5 vs. 8). PSS was lower in depressed patients (p < .001). Family caregiver burden were also higher in depressive groups (p < .001). Among patients only the depression was negatively correlated with PSS (p < .001,r = −2.97). Presence of depression (p < .001,r = 0.381) was positively correlated and family caregiver role was negatively correlated (p < .001,r = −0.208) with caregiver burden. Presence of depression was the independent predictor for both, lower PSS for patients and higher burden for caregivers. Conclusions:The results of this study is noteworthy because it may help for planning any supportive care program not only for patients but together with their caregiver at the same time during chemotherapy period in Turkish population. 

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Exploration of Factors Related to Depressive Symptomatology in Family Members of Military Veterans With Traumatic Brain Injury

Traumatic brain injury (TBI) is a family affair, affecting those with the injury and their families. Psychological distress, often measured as depression or depressive symptoms, is highly prevalent among family members. Predictors of depression in family members of civilians with TBI have been examined, but predictors of depression in family members of military veterans have received very little research attention and are poorly understood. To address the knowledge gap, this study explored factors related to depressive symptoms in family members of veterans in the United States, using an ecological framework. Baseline data from 83 family members were used. Family members with higher caregiver burden, presence of a veteran with posttraumatic stress disorder (PTSD), and greater financial difficulty experienced significantly more depressive symptoms. Findings suggest that efforts to support family members and decrease their depression should aim to reduce caregiver burden and financial difficulty, and help family members cope with veteran PTSD and TBI. Family-focused interventions are needed. 

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Repetitive Negative Thinking: The Link Between Caregiver Burden and Depressive Symptoms

Purpose/Objectives: To explore whether repetitive negative thinking (RNT) mediates the pathway between subscales of caregiver burden and depressive symptoms. Design: Cross-sectional pilot study. Setting: Bone marrow unit at the University of Louisville Hospital in Kentucky and caregiver support organizations in Louisville. Sample: 49 current cancer caregivers who were primarily spouses or partners of individuals with lymphoma or leukemia and provided care for a median of 30 hours each week for 12 months. Methods: Caregivers completed questionnaires assessing caregiver burden, RNT, and depressive symptoms. Main Research Variables: Caregiver burden, RNT, and depressive symptoms. Findings: Results showed that RNT mediated the relationship between burden (as a result of impact on schedule or finances) and depressive symptoms. Although burden from a lack of family support and impact on health was positively related to depressive symptoms, these relationships were not mediated by RNT. In addition, caregiver esteem was not associated with RNT or depressive symptoms. Conclusions: RNT plays an important role in maintaining and potentially exacerbating caregiver distress. Assessment and intervention regarding RNT in cancer caregivers may reduce depressive symptoms prompted by burden from an impact on schedule or finances. Implications for Nursing: Nurses may be significant in connecting caregivers experiencing RNT to resources and professionals to enhance adaptive coping and potentially prevent depressive symptoms. [ABSTRACT FROM AUTHOR]

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Benefit finding for Chinese family caregivers of community‐dwelling stroke survivors: A cross‐sectional study

Aims and objectives: To identify whether benefit finding is a mediator or moderator in the relationship between caregiver burden and psychological well‐being (anxiety and depression) in Chinese family caregivers of community‐dwelling stroke survivors. Background: Family caregivers not only bear a heavy burden, a high level of anxiety and depression, but also experience benefit finding (positive effects result from stressful events). However, the relationships among benefit finding, caregiver burden and psychological well‐being in Chinese family caregivers are not well known. Design: This study was a cross‐sectional correlational design. Methods: Caregivers (<italic>n</italic> = 145) of stroke survivors were recruited from two communities in Zhengzhou, China. Data were collected by face‐to‐face interviews with structured questionnaires, examining caregiver burden, benefit finding and psychological well‐being of caregivers. A hierarchical regression analysis explored whether caregiver burden and benefit finding were associated with anxiety and depression of caregivers. The moderator role of benefit finding was examined by testing the significance of the interaction between caregiver burden and benefit finding. A mediational model was used to test benefit finding as a mediator between caregiver burden and psychological well‐being of caregivers using process in spss 21.0. Results: Caregiver burden and benefit finding were significantly associated with both anxiety and depression of caregivers. Benefit finding did not portray a moderating role, but portrayed the mediator role in the relationship between caregiver burden, anxiety and depression in caregivers. Conclusion: This study provides the preliminary evidence to nurses that intervention focus on benefit finding may help improve the psychological well‐being of caregivers. Relevance to clinical practice: This study offers nurses rational for assessing caregiver's negative emotions and benefit finding. By targeting benefit finding, the nurse may guide caregivers in benefit identification and implement interventions to reduce anxiety, depression and caregiver burden. 

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Evaluation of a brief pilot psychoeducational support group intervention for family caregivers of cancer patients: a quasi-experimental mixed-methods study

Background: Family caregivers of cancer patients often experience an impaired quality of life (QOL) and emotional distress as a result of their caregiving duties, which may potentially influence the quality of care of their care recipients. The COPE (Caregivers of cancer Outpatients' Psycho-Education support group therapy) intervention was developed as a response to the lack of work done among family caregivers of ambulatory cancer patients in Asia. This group intervention comprised four weekly sessions simultaneously targeting psychoeducation, skills training, and supportive therapy. The present study sought to evaluate the pilot COPE intervention using both quantitative and qualitative measures. The Hospital Anxiety and Depression Scale (HADS) was used to measure both depression and anxiety, while the Caregiver QOL - Cancer (CQOLC) measured caregiver QOL. These instruments were measured at baseline pre-intervention, and immediately post-intervention. A waitlist control group design was adopted. A subset of caregivers from the intervention group were invited for a semi-structured interview post-intervention.; Findings: Quantitative analyses suggest that while QOL remained stable in control group participants, intervention group participants experienced QOL improvements - both in overall QOL and in the specific domain of burden. There were no significant differences in the trajectories of depression and anxiety in both groups. Qualitative analyses suggest that this might have been a result of the intervention not only equipping participants with the relevant coping skills, but also providing a platform for emotional expression and situational reappraisal.; Conclusions: The COPE intervention has shown some efficacy in helping family caregivers of cancer patients, but more work is required before this can be implemented.; Trial Registration: Current Controlled Trials NCT02120183 . Registered 17 April 2014. Retrospectively registered.;

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Evaluation of a brief pilot psychoeducational support group intervention for family caregivers of cancer patients: a quasi-experimental mixed-methods study

Background: Family caregivers of cancer patients often experience an impaired quality of life (QOL) and emotional distress as a result of their caregiving duties, which may potentially influence the quality of care of their care recipients. The COPE (Caregivers of cancer Outpatients' Psycho-Education support group therapy) intervention was developed as a response to the lack of work done among family caregivers of ambulatory cancer patients in Asia. This group intervention comprised four weekly sessions simultaneously targeting psychoeducation, skills training, and supportive therapy. The present study sought to evaluate the pilot COPE intervention using both quantitative and qualitative measures. The Hospital Anxiety and Depression Scale (HADS) was used to measure both depression and anxiety, while the Caregiver QOL - Cancer (CQOLC) measured caregiver QOL. These instruments were measured at baseline pre-intervention, and immediately post-intervention. A waitlist control group design was adopted. A subset of caregivers from the intervention group were invited for a semi-structured interview post-intervention.; Findings: Quantitative analyses suggest that while QOL remained stable in control group participants, intervention group participants experienced QOL improvements - both in overall QOL and in the specific domain of burden. There were no significant differences in the trajectories of depression and anxiety in both groups. Qualitative analyses suggest that this might have been a result of the intervention not only equipping participants with the relevant coping skills, but also providing a platform for emotional expression and situational reappraisal.; Conclusions: The COPE intervention has shown some efficacy in helping family caregivers of cancer patients, but more work is required before this can be implemented.; Trial Registration: Current Controlled Trials NCT02120183 . Registered 17 April 2014. Retrospectively registered.;

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Caring for disabled older adults with musculoskeletal conditions: A transactional model of caregiver burden, coping strategies, and depressive symptoms

Objectives: This study investigated the mediating role of coping strategies in the relationship between caregiver burden and depressive symptoms among family caregivers caring for disabled older adults with musculoskeletal (MSK) conditions.; Methods: The cross-sectional data were from a quota sampling of 494 pairs of disabled older adults and their primary family caregivers in Shanghai, China. The disabled older adults had MSK conditions and limitations in activities of daily living. The mean ages of the older adults and their caregivers were 83.9 and 62.6 years. Path analysis was conducted to test the proposed hypotheses.; Results: Caregivers of adults with MSK conditions were more likely to use active coping to handle time dependence (β [SD]=0.182 [0.055]) and physical burden (β [SD]=0.226 [0.071]) and to use avoidant coping to handle developmental burden (β [SD]=0.414 [0.061]). Both coping strategies were used to handle social burden(active: β [SD]=0.179 [0.078]; avoidant: β [SD]=0.241 [0.073]). Experiencing emotional burden reduced the likelihood of using both coping strategies (active: β [SD]=-0.266 [0.066]; avoidant: β [SD]=-0.373 [0.062]). Active coping had a protective impact on depressive symptoms (β [SD]=-0.228 [0.050]), whereas avoidant coping had an adverse impact on depressive symptoms (β [SD]=0.232 [0.053]).; Conclusions: The findings confirm the mediating effects of coping strategies in the relationship between caregiver burden and depressive symptoms.; Copyright © 2016. Published by Elsevier Ireland Ltd.

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Longitudinal Changes in and Modifiable Predictors of the Prevalence of Severe Depressive Symptoms for Family Caregivers of Terminally Ill Cancer Patients over the First Two Years of Bereavement

Background: Bereaved families endure tremendous grief. However, few studies have longitudinally investigated caregivers' bereavement grief for more than one year postloss and none is from family-oriented Asian countries. Objectives: We explored longitudinal changes in and modifiable predictors of severe depressive symptoms for Taiwanese family caregivers of terminally ill cancer patients over the first two years postloss. Design: For this descriptive, longitudinal study, severe depressive symptoms (Center for Epidemiological Studies Depression Scale score ≥16) were measured 1, 3, 6, 13, 18, and 24 months postloss. To identify modifiable factors (preloss depressive symptom levels, subjective caregiving burden, objective caregiving load, preparedness for patient death, and postloss social support) associated with postloss severe depressive symptoms, we used multivariate logistic regression modeling with the generalized estimating equation. Setting/Participants: Bereaved caregivers ( N = 285) were recruited by convenience from a medical center in northern Taiwan. Results: Bereaved family caregivers' prevalence of severe depressive symptoms peaked one month postloss (73.3%) and significantly decreased to 15.2% 24 months after the patient's death. After adjusting for confounders, bereaved caregivers were more likely to have severe depressive symptoms if they had heavy objective caregiving load and higher preloss depressive symptom levels. However, their likelihood of severe depressive symptoms was buffered by being better prepared for the patients' death and having greater social support. Conclusions: Bereaved family caregivers' severe depressive symptoms decreased significantly over the first two years postloss. Healthcare professionals should appropriately assess at-risk bereaved caregivers when patients are still alive and provide effective interventions to facilitate caregivers' return to normal life. 

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Anxiety, depression and quality of life in family caregivers of palliative cancer patients during home care and after the patient's death

We examined psychological parameters in family caregivers of palliative cancer patients before and after the death of the patients. Caregivers’ data about depression and anxiety (Hospital Anxiety and Depression Scale), quality‐of‐life (Short Form‐8 Health Survey), and social support (Oslo Social Support Scale) were collected at the beginning of home care (t1) and 2 months after the patient had died (t2). Regression models were employed to examine factors related to depression and anxiety in the bereaved caregivers. We interviewed 72 relatives, who were the primary caregiver of a patient. One‐third (31.9%) of caregivers had high anxiety levels and 29.2% had high depression levels (t1, cut‐off = 10). At t2, anxiety and depression had decreased significantly. There were no changes in quality‐of‐life over time. At both points of assessments, quality‐of‐life was lower than in the general population. Relevant factors for higher anxiety and depression in the bereaved caregivers were high levels of distress at t1, insufficient social support and low physical function. Bereaved caregivers were particularly depressed when they had been the spouse of the patient. Healthcare professionals should consider social isolation of caring relatives both during homecare and afterwards. Thus, it seems to be important to routinely offer support to spouses. 

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Burden on caregivers of older patients with bipolar disorder

Objectives: Available data suggest high burden on caregivers of patients with bipolar disorder (BD), yet the well-being of patients with BD increasingly depends on family members, partners and close friends. As patients with BD get older, the need for informal care may shift. We aimed to describe the caregivers of older adults with BD (OABD) and explore what patients' and caregivers' characteristics are associated with caregiver burden. Method: Forty-seven caregivers of OABD were questioned about their perceived burden and depressive symptoms. Linear regression analyses were performed to examine the influence of various patients' and caregivers' characteristics on caregiver burden or depression. Results: More than half of all caregivers experienced some degree of burden, and 6.4% reported depressive symptoms. The number of psychiatric admissions and social functioning were the only patients' characteristics associated with higher burden. Caregiver burden was significantly associated with caregiver's other obligations. None of the patient or caregiver characteristics was significantly associated with depression in caregivers of OABD. Conclusion: In OABD, even with few residual symptoms, more than half of all caregivers experience substantial burden. Future studies are needed to confirm if improving social functioning and preventing psychiatric hospitalizations decrease the burden on the caregivers of OABD. 

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Participation and interest in support services among family caregivers of older adults with cancer

Objective: The purpose of this study was to describe distressed and underprepared family caregiver's use of and interest in formal support services (eg, professional counseling, education, organizational assistance). Method: Cross-sectional mail survey conducted in communities of 8 cancer centers in Tennessee, Alabama, and Florida (response rate: 42%). Family caregivers of Medicare beneficiaries with pancreatic, lung, brain, ovarian, head and neck, hematologic, and stage IV cancers reported support service use and completed validated measures of depression, anxiety, burden, preparedness, and health. Results: Caregivers (n = 294) were on average age 65 years and mostly female (73%), White (91%), and care recipients' spouse/partner (60%); patients averaged 75 years were majority male (54%) with lung cancer (39%). Thirty-two percent of caregivers reported accessing services while 28% were "mostly" or "extremely" interested. Thirty-five percent of caregivers with high depressive symptoms (n = 122), 33% with high anxiety symptoms (n = 100), and 25% of those in the lowest quartile of preparedness (n = 77) accessed services. Thirty-eight percent of those with high depressive symptoms, 47% with high anxiety symptoms, and 36% in the lowest quartile of preparedness were "mostly" or "extremely" interested in receiving services. Being interested in support services was significantly associated with being a minority, shorter durations of caregiving, and with higher stress burden. Conclusions: A large proportion of family caregivers, including those experiencing depression and anxiety symptoms and who were underprepared, are not using formal support services but have a strong interest in services. Strategies to increase service use may include targeting distressed caregivers early in their caregiving experience. 

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Community REACH: An Implementation of an Evidence- Based Caregiver Program

Background and Objectives: Family caregivers (CGs) are critical to the provision of long-term services and support for older adults. Numerous intervention programs to alleviate CG distress have been developed and evaluated yet few have been implemented in community settings. This paper describes and presents outcomes from Community REACH, a community implementation of the evidence-based Resources for Enhancing Alzheimer's Caregiver Health (REACH) II program. Research Design and Methods: Community REACH involved a partnership between REACH II investigators and United HomeCare Services (UHCS), a nonprofit home health organization that provides home health, personal care, companion, and respite services. The intervention program, an adapted version of an evidence-based program, was a 6-month multicomponent psychosocial intervention, which involved six individual face-to-face and six individual telephone sessions, and telephone support groups. One hundred and forty-six CGs who were primarily female (76%) and Latino, and providing care for an individual with Alzheimer's disease (AD) were enrolled. Program effectiveness was assessed by examining changes in perceived social support, burden, and depression, and CG self-efficacy. Results: At 6 months, CGs reported significant decreases in depression, burden, being and bothered by the care recipient's memory problems. There was also a significant decline in the number of CGs at risk for clinical depression. These improvements were maintained at 12 months and there was an increase in feelings of social support. Discussion and Implications: The findings indicate that evidence-based CG programs can be successfully implemented in community settings and benefit CGs of AD patients. A continued partnership between the program developers and community partners is key to implementation success. 

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Relevance of sleep quality on caregiver burden in Parkinson's disease

Parkinson's disease (PD) is a neurodegenerative disorder which affects the quality of life of patient and their family. Sleep disorders appear in 80-90% of PD patients and have a great impact on the PD well-being. We examined the relationship of patients' sleep quality and depression on burden, mood, quality of life, and quality of sleep of their caregivers. A multicenter, regional (Veneto), observational, cross-sectional study that included 55 patient-caregiver pairs was conducted. Patients were assessed using Parkinson's Disease Sleep Scale (PDSS) and Epworth Sleepiness Scale (ESS) for sleep disorders, Beck Depression Inventory (BDI) as a measure of depression, and Parkinson's Disease Questionnaire (PDQ-39) as a measure of quality of life. Caregivers were evaluated by the Caregiver Burden Inventory (CBI) a measure of burden, BDI, SF-36 Health Survey as measures of HRQoL, and Medical Outcomes Study-Sleep Scale (MOS-SS) for quality of sleep. CBI, HRQoL, MOS-SS, and BDI scores displayed no association with patients' age, cognition (Mini Mental State Examination (MMSE) and Frontal Assessment Battery (FAB)), disease duration, and Hoehn and Yahr (H&Y), and UPDRS III scales whereas were significantly correlated with patients' quality of sleep, depression, and quality life. CBI and HRQoL were also associated respectively with patients' ESS and L-dopa daily dose. This study underscores the presence of a significant relationship between patient and caregiver quality of life. Interestingly, sleep quality and depression rather than motor disability best predicted caregivers' well-being. 

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A pilot study to evaluate the effectiveness of an individualized and cognitive behavioural communication intervention for informal carers of people with dementia: The Talking Sense programme

Background: People with dementia and family carers often experience difficulties communicating together. These difficulties are considered to contribute significantly to the depression, anxiety and negative feelings such as guilt often reported by dementia family carers. Aims: To develop and contribute to the theory and evidence base for single‐component, psychosocial interventions that address these difficulties by evaluating the effectiveness of the Talking Sense programme which was designed to reflect existing best evidence. Methods & Procedures: Talking Sense was delivered as an individualized, one to one, cognitive behavioural approach for developing knowledge, skills, thinking and behaviour of dementia family carers in managing communication difficulties. In this study, a randomized controlled trial compared 27 carers who completed three one‐to‐one individualized sessions using Talking Sense with 25 carers who received a single, knowledge‐only, control discussion. Outcomes & Results: There were no significant differences for the primary outcome measure of carer anxiety and depression as well as carer quality of life and general self‐efficacy. Statistically significant results suggested carers receiving the Talking Sense intervention had fewer communication difficulties happening (p = 0.046) and felt more valued by their relatives (p = 0.046). A score close to significance (p = 0.052) suggested they perceived their relatives to be more communicatively competent. Conclusions & Implications: The intervention and research design were shown to be effective with low attrition and high adherence to treatment. A non‐significant finding for the primary outcome measure does not support the potential for this intervention to effect carer anxiety and depression. The potential for perceived change in the person with dementia, with statistically fewer communication difficulties happening and the carer feeling more valued by their relative, was the most significant finding from this programme of research. Recommendations for further research are made. 

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Expressive social support buffers the impact of care-related work interruptions on caregivers’ depressive symptoms

Objective: To assess if expressive and instrumental social support from family and friends moderate the association of care-related work interruptions (e.g. leaving work for the older adult's doctor appointment) with depressive symptoms among working family caregivers of older adults. Methods: Data were from the Singapore Survey on Informal Caregiving (SSIC). A subsample of 662 dyads, each comprising an older care-recipient [home-dwelling Singaporean aged 75 and older receiving human assistance for at least one activity of daily living (ADL)] and his/her working family caregiver, was analysed. Caregiver depressive symptoms were assessed using the Center for Epidemiologic Studies Depression scale. Care-related work interruptions were scaled through the Mokken scaling procedure. Expressive social support was assessed using a scale by Pearlin and co-workers. Instrumental social support was based on the hours of ADL help provided to the care-recipient by any family member or friend, on behalf of the primary caregiver. A linear regression model, with interaction terms, assessed expressive and instrumental social support as moderators of the association of care-related work interruptions with caregiver depressive symptoms. Results: More care-related work interruptions were associated with more caregiver depressive symptoms. And, this association was moderated by expressive, but not instrumental, social support. Conclusion: Our findings conform to previous qualitative work suggesting that caregivers’ mental health may not benefit from instrumental support, but from receiving expressive support instead. Initiatives for improving the care experience of working caregivers of older adults should focus on promoting expressive support from their friends and family. 

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Effectiveness of interventions for co‐residing family caregivers of people with dementia: Systematic review and meta‐analysis

Background/aim: Occupational therapists and health practitioners commonly provide interventions to family caregivers of people with dementia with the aim of relieving burden, depression, and disruptions in health and social support. To date, the effects of multicomponent interventions specifically targeting these four important outcomes has not been established. The aim of this study was to evaluate the effectiveness of multicomponent interventions on four outcomes for co‐residing family caregivers of people with dementia. Methods: A comprehensive database search of the literature was performed using CINAHL, MEDLINE, PubMed, PsycINFO, OTseeker, EMBASE and the Cochrane library. Randomised control trials (RCTs) that included multicomponent interventions for co‐residing family caregivers addressing burden, depression, health and social support were selected. Relevant articles were critically reviewed and study results were synthesised. Meta‐analysis was conducted separately. Results: Twenty‐two of 358 retrieved studies were selected, with 15 studies being included in the meta‐analyses. The multicomponent interventions identified were comprised of a range of different individual strategies. Significant effective results were found for all four specified outcomes. Conclusions: Many types of multicomponent interventions appear beneficial on all of the four specified outcomes. The literature presents a trend that multicomponent interventions consisting of a combination of counselling, support groups, education, stress and mood management or telephone support are important strategies within an effective multicomponent intervention. 

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Depressive symptoms predict cancer caregivers' physical health decline

Background: Cancer caregiving has been associated with worsening health among caregivers themselves, yet demographic and psychosocial predictors of their long-term health decline are less known. This study examines changes in caregivers' physical health 2 to 8 years after their family members' cancer diagnosis and prospective predictors of that change.; Methods: Caregivers (n = 664; mean age, 53.2 years) participated in a nationwide study at 2 (T1), 5 (T2), and 8 (T3) years after their family members' cancer diagnosis. Physical health (12-item Medical Outcomes Study Short Form Health Survey Physical Component Scale) was assessed T1 through T3 as outcome. Predictors were self-reported at T1, including caregiver demographics (age, sex, education, income, relationship to patient, and employment status), patient cancer severity (from medical records), and caregiver psychosocial factors (caregiving stress, caregiving esteem, social support, and depressive symptoms). Latent growth modeling tested predictors of caregivers' initial physical health and their physical health change across time.; Results: At T1, caregivers reported slightly better physical health than the US population (M = 51.22, P = .002), which declined over the following 6 years (Mslope = -0.27, P < .001). All demographic factors, patient cancer severity, and T1 caregiving stress were related to caregivers' initial physical health (P ≤ .03). Higher depressive symptoms were unrelated to caregivers' initial physical health, but were the only significant predictor of caregivers' more rapid physical health decline (B = -0.02, P = .004).; Conclusion: Findings highlight the unique contribution of caregivers' depressive symptoms to their physical health decline. Assessing and addressing depressive symptoms among caregivers early in the cancer survivorship trajectory may help to prevent premature health decline among this important yet vulnerable population. Cancer 2017;123:4277-4285. © 2017 American Cancer Society.; © 2017 American Cancer Society.

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Beyond quality of life: a cross sectional study on the mental health of patients with chronic kidney disease undergoing dialysis and their caregivers

Background: Patients with terminal chronic kidney disease (CKDT) requiring renal replacement therapies (RRT) undergo important changes in living habits and frequently need caregiving. These patients and their caregivers are risk groups for the development of physical and psychological symptoms. This study aimed to evaluate the prevalence of anxiety, depression, stress, fatigue, social support, and quality of life in patients with CKD and their caregivers.; Method: This cross sectional study was conducted with 21 patients and their caregivers, from January to September 2015. We included patients aged over 18 years, with at least 6 months on dialysis treatment, and caregivers who were family members. The participants' social, demographic, clinical, laboratory, and psychological variables were evaluated. A descriptive analysis and an examination of the association between patients and caregivers were performed.; Results: Among patients, we observed that 38.1% had symptoms that indicated anxiety and depression. The average score for practical social support was 3.15 ± 0.769 and that for emotional social support was 3.16 ± 0.79. As for fatigue, 14.3% of patients reported being 'extremely tired' and 14.3% reported that they engaged in all the activities they usually performed before the illness. Further, 57.1% presented stress, and of these, 66.7% were at the resistance stage, with predominance of psychological symptoms in 60.0%. The quality of life domain in terms of functional capacity (FC) presented a correlation with haemoglobin level (r = 0.581, p = 0.006) and non-anaemic patients presented better FC. Among caregivers, we observed symptoms that indicated anxiety and depression in 33.3% of the sample. Caregivers exhibited an average score of 2.88 ± 0.77 for practical social support and 3.0 ± 0.72 for emotional social support. Further, 14.3% reported being 'extremely tired' and 28.8% reported that they engaged in all activities that they usually performed before the patient's illness. When comparing the two groups (patients vs. caregivers), we observed that they presented similar results for the presence of anxiety, depression, and fatigue. Caregivers received less social support than patients did. Both groups presented similar predominance of stress levels; however, patients presented more predominance of psychological symptoms. With reference to quality of life, patients and caregivers presented similar results on the social aspects, vitality, mental health, and mental domains.; Conclusion: The mental health characteristics of patients and caregivers were similar, and within the context of dialysis for renal disease, both must undergo specific interventions.

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Preloss grief in family caregivers during end-of-life cancer care: A nationwide population-based cohort study

Objective: Severe grief symptoms in family caregivers during end-of-life cancer trajectories are associated with complicated grief and depression after the loss. Nevertheless, severe grief symptoms during end-of-life caregiving in caregivers to cancer patients have been scarcely studied. We aimed to explore associations between severe preloss grief symptoms in caregivers and modifiable factors such as depressive symptoms, caregiver burden, preparedness for death, and end-of-life communication.; Methods: We conducted a population-based prospective study of caregivers to 9512 patients registered with drug reimbursement due to terminal illness, and 3635 caregivers responded. Of these, 2865 caregivers to cancer patients completed a preloss grief scale (Prolonged Grief 13, preloss version). Associations with factors measured during end-of-life caregiving were analyzed using logistic regression.; Results: Severe preloss grief symptoms were reported by 432 caregivers (15.2%). These symptoms were associated with depressive symptoms (adjusted odds ratio [OR] = 12.4; 95% CI, 9.5-16.3), high caregiver burden (adjusted OR = 8.3; 95% CI, 6.3-11.1), low preparedness for death (adjusted OR = 3.3; 95% CI, 2.5-4.4), low level of communication about dying (adjusted OR = 3.2; 95% CI, 2.2-4.4), and "too much" prognostic information (adjusted OR = 2.8; 95%, 1.7-4.6).; Conclusions: Severe preloss grief symptoms were significantly associated with distress, low preparedness, and little communication during caregiving. Thus, severe preloss grief symptoms may be a key indicator for complications in caregivers of cancer patients in an end-of-life trajectory. Targeted interventions are needed to support family caregivers with severe preloss grief symptoms. Development of preloss grief assessment tools and interventions should be a priority target in future research.; Copyright © 2017 John Wiley & Sons, Ltd.

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Mental health among younger and older caregivers of dementia patients

Aim: Caregiver burden in dementia is an important issue, but few studies have examined the mental health of younger and older family caregivers by comparing them with age- and gender-matched community residents. We aimed to compare the mental health of dementia caregivers with that of community residents and to clarify factors related to mental health problems in younger and older caregivers.; Methods: We studied 104 dementia caregivers; 46 were younger (<65 years) and 58 were older (≥65 years). A total of 104 community residents who were matched for age and gender were selected. We compared depression (Center for Epidemiologic Studies Depression Scale for younger participants; Geriatric Depression Scale for older participants), health-related quality of life (QOL) short-form health survey (SF-8), sleep problems, and suicidal ideation between the caregivers and community residents by age. Behavioural and psychological symptoms of dementia, activities of daily living (ADL), and instrumental ADL were assessed among patients with dementia using the Neuropsychiatric Inventory, Physical Self-Maintenance Scale, and Lawton Instrumental ADL Scale, respectively.; Results: According to SF-8 results, both younger and older caregivers had significantly worse mental QOL than community residents (younger caregivers: 46.3 vs community residents: 49.7, P = 0.017; older caregivers: 48.2 vs community residents: 51.1, P = 0.024) but were not more depressive. Sleep problems were significantly more frequent in younger caregivers (39.1%) than in community residents (17.0%) (P = 0.017). Multiple regression analysis revealed that caregivers' deteriorated mental QOL was associated with patients' behavioural and psychological symptoms of dementia in younger caregivers and with dementia patients' instrumental ADL and female gender in older caregivers.; Conclusions: Dementia caregivers had a lower mental QOL than community residents. To maintain caregivers' mental QOL, it is necessary to provide younger caregivers with skills or professional interventions for dealing with behavioural and psychological symptoms of dementia, and older caregivers must be offered adequate care support.; © 2016 The Authors. Psychogeriatrics © 2016 Japanese Psychogeriatric Society.

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Psychological and psychiatric symptoms of terminally ill patients with cancer and their family caregivers in the home-care setting: A nation-wide survey from the perspective of bereaved family members in Japan

Objective: The psychological and psychiatric symptoms of terminally ill cancer patients are highly problematic and have been associated with greater burden among caregivers. Until now, the extent of these problems in the home care setting was unclear.; Methods: This retrospective study was conducted as part of a nationwide survey from the perspective of bereaved family members in Japan (J-HOPE3). The bereaved family members rated the symptoms of delirium and suicidal ideation of patients with cancer, and the sleeplessness and depressed mood of family caregivers utilizing home care services in the one month before the patients' deaths. Regression analyses were performed to identify factors associated with caregivers' sleeplessness or depressed mood.; Results: Of the 532 subjects analyzed, between 17% and 65% of patients experienced various symptoms of delirium, and 27% suicidal ideation. Among family caregivers, 60% experienced sleeplessness and 35% experienced depressed mood at least once during the week. Caregivers' psychological symptoms were associated with their own poor health status, being the spouse of the patient, and the patients' psychological or psychiatric symptoms. To manage patients' symptoms, 11% of caregivers had consulted psychiatrists or psychologists while another 11% wanted to do so.; Conclusion: Psychological problems assessed were common among patients with cancer and their family caregivers in the one month of home care prior to the patient's death. An effective complementary care system, run by home-visit physicians, nurses, and experts in mental disorders, is needed.; Copyright © 2017 Elsevier Inc. All rights reserved.

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The moderating role of social support on depression and anxiety for gastric cancer patients and their family caregivers

Background: There is a consensus that cancer care should go beyond physical care as cancer patients and their family caregivers experience psychological burden, financial difficulty, as well as social relation issues. The current study aimed to investigate the moderating impact of social support on depression and anxiety of cancer patients and their family caregivers.; Methods: Gastric cancer patients and their family caregivers who visited a university medical center in Seoul were approached for participation in the study. Fifty-two pairs of adult patients and caregivers participated in the study. Along with demographic information and the physical condition of the patients, such as pre-operation cancer stage and the type of gastrectomy, social support, depression, and anxiety were measured for patients and caregivers, respectively.; Results: In the first round of analysis, patients' depression was associated with age, while patients' anxiety was related to income. On the other hand, caregivers' depression was not associated with patients' health and living arrangement. In the second round of analysis to examine the moderating effect of social support, patients' income and social support were related to depression and anxiety, but the interaction of income and social support was only observed for anxiety. For caregivers, no interaction effects were found. Social support decreased the negative effects of low income status on the patients.; Conclusion: While the income of the families with cancer cannot be adjusted in the short-term, their experience of social support can be managed by a proper support system. Diverse implications in medical settings are discussed.

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Depressive symptoms in Chinese family caregivers of patients with heart failure: A cross-sectional study

Depressive symptoms are related to negative health outcomes in caregivers of patients with HF. Understanding the factors that are associated with depressive symptoms among caregivers is essential to providing appropriate interventions. Little is known about which status and factors are related to depressive symptoms among Chinese caregivers of patients with heart failure. This study aimed to investigate the status of depressive symptoms and to identify the factors that are associated with depressive symptoms in family caregivers of patients with heart failure in China.A cross-sectional design and a convenience sample were used. Participants (N = 134) from 1 hospital in Chengdu were recruited from June 2013 to June 2014. The following measurement tools were used in this study: Center for Epidemiologic Studies Depression Scale, Hospital Anxiety and Depression Scale, Coping Strategies Simplified Coping Style Questionnaire, and Zarit Burden Interview. A hierarchical multiple linear regression analysis was used to determine which factors were associated with depressive symptoms.The results showed that 31% of the caregivers experienced depressive symptoms. The type of payment for treatment (b = -0.312, P < 0.01), readmissions within the last 3 months (b = 0.397, P < 0.01), duration of caregiving (b = -0.213, P < 0.05), caregiver burden (b = 0.299, P < 0.05), active coping (b = -0.235, P < 0.01), and negative coping (b = 0.245, P < 0.05) were related to caregivers' depressive symptoms. Fifty-four percent of the variance in caregivers' depressive symptoms was explained by these factors.The caregiver depressive symptoms in China were higher than those reported in studies that were conducted in Western countries. Caregiver depressive symptoms can be improved by providing support for new caregivers (with a caregiving duration of less than 1 year), reducing readmissions, easing caregiver burden, and promoting their coping strategies.

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Caregiver burden and prevalence of depression, anxiety and sleep disturbances in Alzheimer's disease caregivers in China

Aims and Objectives: To evaluate caregiver burden and factors that influence this burden among caregivers and patients with Alzheimer's disease in China.; Background: Long-term care can reduce the quality of life for caregivers and result in both mental and physical exhaustion. However, little is known about caregiver burden and associated factors in China.; Design: The study had a quantitative cross-sectional design.; Methods: A total of 309 caregivers and their patients were included in the study. The patients' cognitive, psychological and functional status and their caregivers' burden, sleep quality and mental state were evaluated. Descriptive analyses, single-factor regression and stepwise factor regression were used to determine the effects of various factors on caregiver burden.; Results: Older females and spouses still play an important role in providing family care for those with dementia. Most of the caregivers were the sole full-time caregiver and had little time for themselves. Sleepiness was a common physical problem for caregivers, and some of them had moderate to severe depression and anxiety. A lower functional status of the patient was associated with higher caregiver burden. Poorer physical status compared with before caregiving began, lower life satisfaction, and higher degrees of depression and anxiety were associated with higher caregiver burden.; Conclusion: Depression, anxiety and sleep problems are the main challenges that are faced by family caregivers of patients with Alzheimer's disease. Caregivers' functional status, lower life satisfaction, depression and anxiety influenced caregiver burden. Caregiver burden was related to the severity of the patient's dementia and the personal factors of the caregivers.; Relevance To Clinical Practice: To provide information about caregivers' current status while caring for patients with Alzheimer's disease and to understand caregiver burden and its related factors. Professionals who work with Alzheimer's disease should pay more attention to caregiver burden, especially those with mental and physical problems.; © 2016 John Wiley & Sons Ltd.

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Psychological status and quality of life among primary caregivers of individuals with mental illness: a hospital based study

Background: This study aimed to explore the psychological status and quality of life among primary caregivers of individuals suffering from various mental illnesses including early psychosis, chronic schizophrenia, depressive disorders, anxiety disorders and dementia.; Methods: A total of 350 primary caregivers with relatives seeking treatment at a tertiary psychiatric hospital were recruited for this study. Socio-demographic data was obtained and the brief version of the World Health Organisation Quality of Life instrument was used to assess caregiver's quality of life (QOL). Psychological status among primary caregivers was assessed using the General Anxiety Disorder - 7 item (GAD-7) and Patient Health Questionnaire - 9 item (PHQ-9) scales. Family Interview Schedule (FIS) was used to assess the impact of caregiving relating to social problems, interpersonal strain among family members, work related problems and financial difficulties as a result of their relative's illness. The socio-demographic and clinical correlates of QOL, PHQ-9 and GAD-7 were examined using multiple linear and logistic regression analyses. Associations between QOL domains and psychological status was examined using multiple linear regression analyses.; Results: The mean age of the primary caregivers was 49.7 years (SD = 13.2), ranging from 21 to 82 years, with a preponderance of females (67.6%), aged 50-64 years old (45.7%). Majority were of Chinese ethnicity (57.5%), had secondary level education (43.1%), were married (65.2%), and employed (64.9%). 18.3% of primary caregivers had symptoms of depression (based on PHQ-9 cut-off point of 10 or greater) while 12.7% had symptoms of anxiety (based on GAD-7 cut-off point of 10 or greater). Multiple linear and logistic regression analyses revealed that primary caregivers aged between 35-49 years and 50-64 years, unemployed, living with others, providing care to those diagnosed with dementia and who had higher FIS scores were significantly more likely to report symptoms of depression whilst those who cared for their son/daughter were less likely to be associated with symptoms of depression. Primary caregivers who had lower education, were living with others, were single or divorced/separated, were unemployed and with higher FIS scores were associated with lower QOL domain scores. Those with symptoms of depression were significantly associated with low QOL across all four domains, whilst those with symptoms of anxiety were significantly associated with low QOL in the social relationships domain.; Conclusion: Psychological status of caregivers in the current study was associated with the various domains of QOL. In particular, caregivers' symptoms of depression were significantly associated with lower QOL across all four domains of QOL whereas symptoms of anxiety were associated with lower scores in the social relationships domain. The study suggests a need to provide caregivers with social support and psycho-education to improve the QOL as well as aid in developing healthy coping strategies.

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Pre-admission functional decline in hospitalized persons with dementia: The influence of family caregiver factors

Older adults with dementia are more likely than those who do not have dementia to be hospitalized. Admission functional (ADL) performance is a salient factor predicting functional performance in older adults at discharge. The days preceding hospitalization are often associated with functional loss related to the acute illness. An understanding of functional changes during this transition will inform interventions to prevent functional decline. This secondary analysis examined data from a study that evaluated a family educational empowerment model and included 136 dyads (persons with dementia and their family caregiver). AMOS structural equation modeling examined the effects of family caregiver factors upon change in patient ADL performance (Barthel Index) from baseline (two week prior to hospitalization) to the time of admission, controlling for patient characteristics. Eighty-two percent of the patients had decline prior to admission. Baseline function, depression, and dementia severity, as well as Family caregiver strain, were significantly associated with change in pre-admission ADL performance and explained 40% of the variance. There was a good fit of the model to the data (Χ2=12.9, p=0.305, CFI=0.97, TLI=0.90, RMSEA=0.05). Findings suggest the need for a function-focused approach when admitting patients with dementia to the hospital. FCG strain prior to hospitalization may be a factor impacting trajectory of functional changes in older person with dementia, especially in those with advanced dementia. FCG strain is an important assessment parameter in the risk assessment for functional decline, to be considered when engaging the FCG in the plan for functional recovery.; Copyright © 2017 Elsevier B.V. All rights reserved.

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The occurrence and persistence of thoughts of suicide, self-harm and death in family caregivers of people with dementia: a longitudinal data analysis over 2 years

Objective: Family caregivers of people with dementia often report high levels of stress and depression, but little is known about those who contemplate suicide or self-harm. This study explores thoughts of suicide, self-harm and death in dementia caregivers and investigates the characteristics that distinguish them from those without such thoughts.  Methods: Data were collected every 3 months, for 24 months, from 192 family caregivers of people with dementia living in the Netherlands. Caregivers did not have a clinical depression or anxiety disorder at baseline. Suicide-related thoughts were measured with an item from the Mini International Neuropsychiatric Interview, a diagnostic instrument for DSM-IV mental disorders. Fisher exact, analysis of variance or Kruskal-Wallis tests compared the characteristics of caregivers who had contemplated suicide with two comparison groups. Results: Within 24 months, 76 caregivers reported symptoms of a potential depression and were further assessed for suicidal thoughts. Nine carers (11.8%, 4.7% of the total sample) reported suicidal thoughts with three of those at multiple points. Caregivers with suicidal thoughts had more severe depressive and anxious symptoms, had a lower sense of competence and mastery, felt less happy and experienced more health problems, less family support and more feelings of loneliness than caregivers who had not. Conclusion: Suicidal thoughts are present in dementia caregivers and can persist across the care trajectory. Various psychological and social characteristics significantly distinguish caregivers with suicidal thoughts from those without. More research is needed to enable the identification of high-risk caregivers and provide an evidence base for the development of preventive strategies and interventions. 

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Mental Wellbeing of Family Members of Autistic Adults

Family members are often the primary caregiver for autistic adults and this responsibility may impact on the carer's wellbeing and quality of life. 109 family members of autistic adults completed an online survey assessing their wellbeing relating to their caring role for their autistic relative. Family members who were supporting an autistic relative with co-occurring mental health difficulties and who they reported as unprepared for the future, self-reported higher levels of worry, depression, anxiety and stress, and poorer quality of life. These findings emphasise the importance of support for family members of autistic adults, whether through external services to support their relative or individual mental health support for the carer.

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An evaluation of a therapeutic garden's influence on the quality of life of aged care residents with dementia

To evaluate whether a therapeutic garden can improve the quality of life of aged care residents with dementia and their carers, objective instruments as well as interviews with residents, staff, and family members were employed.

Residents' mean quality of life scores increased by just over 10%, mean depression scores decreased similarly and mean agitation scores decreased by almost half. Resident, staff and family member interviews elicited positive feedback including observations that it had improved the quality of life for residents and decreased staff and family stress levels. In sum, qualitative and quantitative pre and post findings indicate that an environmental change such as a therapeutic garden can improve the lives of aged care residents with dementia, and their formal and informal carers.

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Informal care giving to more disabled people with multiple sclerosis

Purpose. About 30% of the people with multiple sclerosis (MS) require some form of home care assistance and 80% of that assistance is provided by informal or unpaid care givers. This study focusses on the care givers for 530 more disabled people with MS, with the objective of learning more about informal care giving to people with greater dependency and need for assistance.

Method. The data presented in this study were collected in a national survey of 530 people who provided informal care to more disabled people with MS.

Results. Almost half of these care givers reported that they provided more than 20 h of care per week to the person with MS, with more than 9 in 10 shopping for groceries, doing indoor housework, preparing meals or providing transportation for the person with MS. More than 4 in 10 employed care givers reduced the amount of time worked in the previous 12 months because of their care giving responsibilities. Although more than half of the MS care givers in our study reported that care giving was demanding, time consuming or challenging, about 90% of these MS care givers were happy that they could help. About two in three of these MS care givers found that care giving was rewarding, with more than 8 in 10 proud of the care they provided.

Conclusions. More than a quarter of the informal care givers to people with MS thought they would benefit from treatment or counselling provided by mental health professionals. Not only it is necessary to provide access to mental health services for people with MS, but it is also important to assure that their informal care givers also have access to appropriate mental health care, given the scope of their care giving responsibilities.

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A randomized controlled trial of a hospital at home service for the terminally ill

This study evaluated the impact of a Cambridge hospital at home service (CHAH) on patients' quality of care, likelihood of remaining at home in their final 2 weeks of life and general practitioner (GP) visits. The design was a randomized controlled trial, comparing CHAH with standard care. The patient's district nurse, GP and informal carer were surveyed within 6 weeks of patient's death, and 225 district nurses, 194 GPs and 144 informal carers of 229 patients responded. There was no clear evidence that CHAH increased likelihood of remaining at home during the final 2 weeks of life. However, the service was associated with fewer GP out of hours visits. All respondent groups rated CHAH favourably compared to standard care but emphasized different aspects. District nurses rated CHAH as better than standard care in terms of adequacy of night care and support for the carer, GPs in terms of anxiety and depression, and informal carers in terms of control of pain and nausea. Thus whilst CHAH was not found to increase the likelihood of remaining at home, it appeared to be associated with better quality home care.

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Exploring differences in depression, role captivity, and self-acceptance in Hispanic and non-Hispanic adult children caregivers

A variation of the stress, appraisal, and coping model was used to examine the negative and positive consequences of providing care to a person diagnosed with Alzheimer's disease (AD). Data were collected from a sample of 113 Hispanic and non-Hispanic adult children who were providing care to impaired parents. Results showed that the Hispanic caregivers were more likely to be experiencing less depression, lower levels of role captivity, and higher amounts of self-acceptance than the non-Hispanic (White) caregivers. While significant differences between Hispanic and non-Hispanic caregivers were present, results from multiple regression analysis demonstrated that feelings of role captivity were stronger predictors of both negative and positive caregiving outcomes than was the caregivers' ethnic status. The findings of this study indicate a continued need for future research with more diverse groups of AD caregivers in order to develop more culturally appropriate interventions.

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The development and validation of a quality of life measure for the carers of people with Parkinson's disease (the PDQ-Carer)

Background: Parkinson’s disease (PD) can have substantial effects not only on the quality of life of those diagnosedwith the condition but also upon the informal carers who provide support and assistance to them. However, to date no well-validated carer specific quality of life measure has been developed for carers of people with PD.

Objective: This paper documents the development and validation of a PD specific carer quality of life scale.

Methods: In depth interviews were undertaken with carers of people with PD. The interviews were transcribed and analysed thematically to derive a pool of potential items for the questionnaire. A pilot survey was used to refine the initial version of the questionnaire. A developmental survey was undertaken and the results analysed to produce the final 29-item measure. A validation survey was then undertaken to assess the construct validity and reliability of the measure.

Results: Survey results suggest a 29-item questionnaire tapping four dimensions of quality of life (Social and Personal Activities, Anxiety and Depression, Self care, and Strain). Internal consistency reliability was found to be high for all domains. Data completeness was high. Construct validity (assessed by correlations with a generic measure of quality of life) confirmed prior hypotheses.

Conclusion: The 29-item Parkinson Disease Questionnaire for Carers (PDQ-Carer) is a short, meaningful quality of life instrument, which taps areas of specific salience and concern to PD carers.

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Family carers in stroke care: examining the relationship between problem-solving, depression and general health

Aims and objectives.  The purpose of this article is to describe the problem-solving abilities of Hong Kong family carers looking after a stroke patients at home and report the relationships between their perceived problem-solving abilities with their depression level, general health status, and the functional recovery of stroke patients.

Background.  Previous research on supportive interventions for caregiving in stroke care suggests that enhancing carers’ problem-solving abilities is useful. Nevertheless, not much is known about the relationship between carers’ problem-solving abilities and their physical and psychosocial health and there is notably little work that has been done with the Chinese population.

Design.  A cross-sectional and correlational design was used.

Methods.  A convenience sample of 70 family carers, who were the main carers of stroke patients at home, during the first three months poststroke was recruited to complete a self-report questionnaire.

Result.  Significant correlations were found between the family carers’ global perceived problem-solving abilities and higher level of depressive symptoms (r = 0·35, P = 0·01) and poorer perceived health (r = 0·50, P = 0·01) as measured using the Center for Epidemiological Studies – Depression Scale and General Health Questionnaire. Among the three subscales of the Problem-Solving Inventory, problem-solving confidence showed the highest correlation with these variables. The functional ability of the stroke patients as measured using the Modified Barthel Index (MBI) was not associated with any variables.

Conclusion.  Findings of this study suggest that perception of confidence is a key factor in appraisal of problem-solving among Chinese family carers, which raises questions for future research about the impact of cultural influences on designing and measuring interventions.

Relevance to clinical practice.  The study has implications for nursing and health care practice and for developing interventions targeted at building self-confidence among Chinese carers.

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High score on the Relative Stress Scale, a marker of possible psychiatric disorder in family carers of patients with dementia

Objective: To compare the scores on the Relative Stress Scale (RSS) with those on the General Health Questionnaire (GHQ) and the Geriatric Depression Scale (GDS), and to establish a cut-off score for RSS in order to distinguish carers with symptoms of psychiatric disorders from those without.

Methods: One hundred and ninety-four carers of 194 patients suffering from dementia according to ICD-10 were included in the study. Burden of care was assessed by the 15-items RSS, and psychiatric symptoms by means of the GHQ-30 and the 30-items GDS. A case score above 5 on GHQ and above 13 on GDS were used to define carers with probable psychiatric morbidity. Sensitivity (SS), specificity (SP), accuracy and likelihood ratio for a positive test (LR+) were calculated for different cut-points of the RSS.

Results: Fifty-six percent of the carers had a GHQ score above 5, and 22% had a GDS score above 13. A two-step cluster analysis using 192 of the 194 carers, identified three groups of carers; a low risk group for psychiatric morbidity (LRG), 82 carers with GHQ ≤ 5 and GDS ≤ 13; a medium risk group (MRG), 69 carers with GHQ > 5 and GDS ≤ 13; and a high-risk group (HRG), 40 carers with GHQ > 5 and GDS > 13. The optimal RSS cut-off to distinguish between the LRG and the others was > 23 (SS 0.72, SP 0.82, accuracy 0.76, LR + 4.0), whereas the optimal cut-off to separate the HRG from the others was >30 (SS 0.74, SP 0.87, accuracy 0.84, LR + 5.7).

Conclusion: The RSS is a useful instrument to stratify carers according to their risk of psychiatric morbidity. Copyright © 2006 John Wiley & Sons, Ltd.

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Patients' and carers' perceptions of factors influencing recovery after cardiac surgery

Stress and anxiety experienced by patients following myocardial infarction are well documented. Moreover, partners feel distress when they realize that they must assume responsibility for day-to-day care once the period of hospitalization is over. However, despite the trend towards early hospital discharge and the role which carers appear to be expected to undertake during the recovery of patients who have had cardiac surgery, few studies have been undertaken with this group outside the United States of America. This omission was filled by a descriptive survey with 60 patients and carers following cardiac surgery. Data were obtained during early recovery (1 week after hospital discharge) and 6 weeks later. The results indicated that carers assumed a heavy burden once the patient had left hospital and were less satisfied with the timing of discharge than the patients. Information provided by nurses was consistently rated more highly than information provided by doctors or physiotherapists but there was scope for increasing input with both groups. High levels of satisfaction with the information provided by health professionals were associated with lower scores on the Hospital Anxiety and Depression Scale. More qualitative, in-depth studies to explore the precise needs of patients and their carers are needed to ensure that in future both groups are better prepared.

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Activities of daily living and quality of life across different stages of dementia: a UK study

Objectives: People with dementia (PwD) require an increasing degree of assistance with activities of daily living (ADLs), and dependency may negatively impact on their well-being. However, it remains unclear which activities are impaired at each stage of dementia and to what extent this is associated with variations in quality of life (QoL) across the different stages, which were the two objectives of this study.

Methods: The sample comprised 122 PwD, and their carers, either living at home or recently admitted to long-term care. Measures of cognition and QoL were completed by the PwD and proxy measures of psychopathology, depression, ADLs and QoL were recorded. Using frequency, correlation and multiple regression analysis, data were analysed for the number of ADL impairments across mild, moderate and severe dementia and for the factors impacting on QoL.

Results: ADL performance deteriorates differently for individual activities, with some ADLs showing impairment in mild dementia, including dressing, whereas others only deteriorate later on, including feeding. This decline may be seen in the degree to which carers perceive ADLs to explain the QoL of the PwD, with more ADLs associated with QoL in severe dementia. Results of the regression analysis showed that total ADL performance however was only impacting on QoL in moderate dementia.

Conclusion: Knowledge about performance deterioration in different ADLs has implications for designing interventions to address specific activities at different stages of the disease. Furthermore, findings suggest that different factors are important to consider when trying to improve or maintain QoL at different stages.

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No effects of a combination of caregivers support group and memory training/music therapy in dementia patients from a memory clinic population

Objectives: To evaluate the impact of a combination of caregiver support group and memory training/music therapy in dementia patients on behavioural and psychological symptoms (BPSD) and caregiver burden compared to a control group.

Method: Eighteen patient-carer-dyads in the treatment group and 18 patient-carer-dyads as controls were studied in the setting of a memory clinic of a psychiatric university hospital over a period of 2 years. Controls were matched for age, gender, diagnosis, dementia severity, living arrangement and medication. The interventions were conducted once per week for 1 hour run by a clinical psychogeriatric team. Outcome measures were patients' cognitive and functional status as well as BPSD and caregivers subjective burden and depression measured by validated scales. Data were obtained 6, 12 and 24 months after baseline.

Results: There were no significant differences between the intervention and control group neither after 6, 12 nor after 24 months treatment.

Conclusions: The lack of a positive impact in alleviating caregiver burden or BPSD after intensive psychological interventions may result from extensive care in the routine clinical management including individual counselling for patients and families. The effect of ‘treatment as usual’ needs to be taken into account when comparing an intervention and control group, as well as the dosage of the intervention. Copyright © 2004 John Wiley & Sons, Ltd.

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Methodological issues in inclusive intellectual disability research: a health promotion needs assessment of people attending Irish disability services

Background  This paper describes a novel combination of inclusive methods to evaluate health and health promotion needs of service users (clients) with intellectual disability. Sixty centres provide disability services to over 900 clients with intellectual disability in the East Coast Area Health Board region of Ireland (population approximately 325 000). This is the first known triangulated large-scale approach to inclusive needs assessment of clients using regional disability services in Ireland.

Method  The research included interviewer-directed surveys of 247 clients with intellectual disability (or advocates) and 180 clients with physical/sensory disability; focus groups for clients, service providers and carers; and a postal survey for centre managers. Modification of existing surveys was required for people with intellectual disability.

Results  Fifty-six of 60 (93.3%) centres participated. The response rate at the client level was 98.8% (3/250 refusals). Health behaviours, likes and dislikes were well described by clients and advocates. Clients identified the need for more creative therapy, physical activity, relaxation therapy and social activities. Service providers and carers emphasized more the need for speech and language therapy, counselling, occupational therapy and physiotherapy.

Conclusions  Inclusive research methods can produce useful outcome measures of the health promotion needs of those with disability. Triangulation is valuable, where clients, carers and service providers are all involved in the research process.

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Young caregivers in the end-of-life setting: a population-based profile of an emerging group

Purpose: Little is known about young caregivers of people with advanced life-limiting illness. Better understanding of the needs and characteristics of these young caregivers can inform development of palliative care and other support services.

Methods: A population-based analysis of caregivers was performed from piloted questions included in the 2001–2007 face-to-face annual health surveys of 23,706 South Australians on the death of a loved one, caregiving provided, and characteristics of the deceased individual and caregiver. The survey was representative of the population by age, gender, and region of residence.

Findings: Most active care was provided by older, close family members, but large numbers of young people (ages 15–29) also provided assistance to individuals with advanced life-limiting illness. They comprised 14.4% of those undertaking “hands-on” care on a daily or intermittent basis, whom we grouped together as active caregivers. Almost as many young males as females participate in active caregiving (men represent 46%); most provide care while being employed, including 38% who work full-time. Over half of those engaged in hands-on care indicated the experience to be worse or much worse than expected, with young people more frequently reporting dissatisfaction thereof. Young caregivers also exhibited an increased perception of the need for assistance with grief.

Conclusion: Young people can be integral to end-of-life care, and represent a significant cohort of active caregivers with unique needs and experiences. They may have a more negative experience as caregivers, and increased needs for grief counseling services compared to other age cohorts of caregivers.

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Rasch analysis of the Hospital Anxiety and Depression Scale among caregivers of cancer survivors: implications for its use in psycho-oncology

Objective: The Hospital Anxiety and Depression Scale (HADS) is often used to screen for cancer caregivers' anxiety and depression, despite few studies examining the tool's psychometric performance within this population. The purpose of this article is to use Rasch analysis to assess the psychometric properties of the HADS in a sample of cancer caregivers.

Methods: HADS was administered to 541 caregivers of a population-based sample of patients diagnosed with one of the eight most incident cancers in Australia. Rasch analysis was conducted using RUMM2020.

Results: More than two-thirds of caregivers were women and most participants were married (95.9%) and caring for their spouse/partner with cancer (89.8%). The HADS-Anxiety (HADS-A) subscale showed good fit to the model, with appropriate internal consistency after removal of item 11. There were no disordered thresholds and no differential item functioning (DIF) for sex or age. To achieve satisfactory model fit for the HADS-Depression (HADS-D) subscale item 8 was removed due to DIF for sex and item 14 was rescored to resolve disordered thresholds. Analyses supported the unidimensionality of the individual subscales; however, there was no support for the combination of subscales to form a HADS-Total.

Conclusions: The results of Rasch analysis support the use of a modified version of the HADS-A and HADS-D among cancer caregivers. Further research is needed to confirm these findings and identify revised clinical cut-points. Findings reinforce the need for clinicians and researchers to formally test the psychometric properties of the instruments that they intend to use with different samples. Copyright © 2010 John Wiley & Sons, Ltd.

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The relationship between self-efficacy and positive aspects of caregiving in Alzheimer's disease caregivers

Objectives: Positive aspects of the caregiving experience may buffer caregivers from the many negative psychological and physical consequences of caregiving. Understanding what factors relate to the recognition of positive aspects of caregiving is important for the enhancement of caregiver well-being. Self-efficacy is a potentially modifiable psychological construct that has been associated with positive thinking, improved control of negative affect, and enhanced motivation.

Methods: This study examined the relationship between positive aspects of caregiving and self-efficacy among 57 family members caring for a loved one with Alzheimer's disease. Participant data was gathered through individual interviews conducted as a part of a larger randomized controlled trial of a caregiver intervention.

Results: We found that self-efficacy accounted for a significant percentage of the variance in positive aspects of caregiving after controlling for other factors commonly associated with positive aspects of caregiving including caregiver demographics, care recipient neuropsychiatric symptoms, and caregiver depression.

Conclusions: Our results suggest that high self-efficacy relates to caregivers’ perception of positive aspects of the caregiving experience.

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Perceptions of psychosis, coping, appraisals, and psychological distress in the relatives of patients with schizophrenia: an exploration using self-regulation theory

OBJECTIVE: Following Leventhal's self-regulation model, the purpose of the present study was to provide an examination of the relationship between psychosis perceptions, coping strategies, appraisals, and distress in the relatives of patients with schizophrenia.

DESIGN: Cross-sectional study. METHOD: Participants were 42 relatives of patients with schizophrenia who completed the Hospital Anxiety and Depression Scale (HADS), a brief coping strategies measure (COPE), the Revised Illness Perception Questionnaire (IPQR), and a measure of primary and secondary appraisals (Family Questionnaire).

RESULTS: In general, carers who viewed their relative's psychosis as chronic, who had a stronger illness identity (experience of symptoms), who held a stronger belief in the severity of its consequences, and who reported weaker beliefs in treatment control but stronger beliefs that their relative could exert control over their condition had higher distress scores. Coping through seeking emotional support, the use of religion/spirituality, active coping, acceptance, and positive reframing were associated with less distress, while coping through self-blame was associated with higher distress scores. Hierarchical regression demonstrated that illness perceptions and coping (acceptance, positive reframing, and self-blame), respectively, made significant additional contributions to the variance in distress when entered after demographics, and primary and secondary appraisals. Furthermore, a mediational analysis suggested that coping strategies characterized by greater positive reframing, less self-blame, and greater acceptance mediated the relationship between distress, and both illness identity and carer's beliefs about how much personal control the patient could exercise over their condition. There was no mediational effect of coping on the relationship between distress and carers' perceptions about symptom control through medical treatment.

CONCLUSION: Results provide partial but not unequivocal support for the self-regulation model in the current sample. Findings may invite us to consider the further use of the self-regulation/common sense model as a framework for understanding distress in the carers of people with a diagnosis of schizophrenia.

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Suicidal ideation in family carers of people with dementia: a pilot study

Objective: Two small studies have suggested that family carers of people with dementia may be a high-risk group for suicide. The objective of this study was to further explore the rate of suicidal ideation in a large sample of carers and identify psychosocial risk and protective factors.

Method: A cross-sectional survey was conducted with 566 family carers. The survey included measures of suicidality, self-efficacy, physical health, depression, anxiety, hopelessness, optimism, burden, coping strategies, and social support.

Results: Sixteen percent of carers had contemplated suicide more than once in the previous year. There were univariate differences between suicidal and non-suicidal carers on self-efficacy, social support, coping, burden, depression, anxiety, hopelessness, optimism, reasons for living, and symptoms of dementia, as well as age and income management. In a multivariate model, age, depression, and reasons for living predicted suicidal ideation. In tests for mediation, satisfaction with social support and dysfunctional coping had indirect effects on suicidal ideation via depression.

Conclusion: Family carers of people with dementia have high rates of suicidal ideation, with depression a risk factor and increasing age and reasons for living as protective factors. Depression and reasons for living should be targeted in interventions to reduce suicide risk in dementia carers.

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Which outcomes should we measure in adult epilepsy trials? The views of people with epilepsy and informal carers

Objective: So that informed treatment decisions can be made, clinical trials need to evaluate treatments against domains that are important to people with epilepsy (PWE), their carers, and clinicians. Health professionals have identified domains of importance to them via the International League Against Epilepsy's Commission on Outcome Measurement (COME). However, patients and carers have not been systematically asked.

Methods: Via the membership of the British Epilepsy Association, we recruited and surveyed 352 PWE and 263 of their informal carers. They were presented with 10 outcome domains (including the 5 identified by COME) and asked to rate their importance using a 9-point Likert scale. They were also asked to identify any additional domains of importance.

Results: The patients' mean age was 49 years, the median number of years since diagnosis was 20, and 65% had experienced seizures in the prior 12 months. Most carers were the spouse or parent. Patients' and carers' mean ratings indicated that their outcome priorities were similar, as were those of patients who had and had not experienced recent seizures. There was consensus among patients that 6 domains were of critical importance. These included the 5 identified by COME (namely, and in order of importance, the effects of the treatment on “Seizure severity”, “Seizure frequency”, “Quality of life”, “Cognitive function”, and “Adverse events”), as well as one additional domain (“Independence/need for support”). There was consensus among carers that the 5 COME domains were also critically important. They, however, identified 3 further domains as critically important. These were the effects of the treatment on patient “Depression”, “Anxiety”, and “Independence/need for support”.

Conclusions: Our study found some overlap between the priorities of PWE, carers, and health professionals. They, however, highlight additional areas of importance to patients and carers. Our results could inform a core outcome set for epilepsy that represents the domains that should be reported as a minimum by all trials. This could promote trials which produce meaningful results and consistency in measurement and reporting.

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Wellbeing among people with dementia and their next of kin over a period of 3 years

Little is known about the dyadic experience over time of people with dementia and their next of kin. The aim of this study was to investigate the state of mind of people with dementia, their next of kin’s experience of burden and satisfaction, and factors associated with these experiences over a 3-year period. The sample consisted of 32 people with dementia living at home with family caregivers in the south of Sweden. Data were collected during the period 2004–2007 and consisted of patients self reports (GDS), dementia nurse assessment (MMSE, Berger and ADL) and next-of-kin assessment (patient’s state of mind and care provision). Data also consisted of next-of-kin’s self reports concerning health, burden and satisfaction. The result showed that patients’ state of mind was mainly positive at baseline but a deterioration was seen over time in the patient’s mood and cognitive functioning together with an increase in ADL-dependency and suspected depression. Dependency in personal ADL entailed a higher risk of being in a negative state of mind. For next of kin the experience of burden increased while satisfaction decreased over the 3 years. The inter-relationship between the patients’ mood and the caregiver’s satisfaction and burden seems to get stronger over time. At baseline caregiver burden was mainly related to the next of kins’ general health and to patient behaviours that were difficult to handle. During the progression of the disease caregiver satisfaction becomes increasingly related to patient state of mind and dependency. There is, however, a need for more research focusing on the specific inter-relational aspects as previous studies have mainly focused on either the situation for the person with dementia or on the caregiver.

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The relation of entrapment, shame and guilt to depression, in carers of people with dementia

There is increasing research exploring depression in carers of people with dementia. This study explored the relation of entrapment, shame and guilt to depression in a group of 70 carers of those with dementia. As in other studies the experience of entrapment in the role was highly related to depression. Moreover, experiences of shame relating to self-criticism, other people's expectations and the fear of their criticism were significantly related to depression, entrapment and guilt. Guilt however, as focused on the fears of harming others, letting others down and sense of responsibility, was not associated with depression or entrapment. Depression in carers may relate in part to feeling trapped in a role but also being vulnerable to criticism and feelings of inadequacy in that role. In this study, degree of behavioural disturbance/dependence was not found to be significantly associated with any of the research variables.

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The coping methods of patients with Parkinson's disease their carers and the associations between health-related quality of life and depression

The methods of coping and their relationship to disease severity, cognitive function, depression and health-related quality of life (HRQoL) were examined in 79 Parkinson's disease (PD) patients and their carers. The coping methods of the PD patients were not associated with disease severity, cognitive function, or depression. In general the majority of correlations were weak. However, patients who used avoidance and cognitive coping methods reported improved HRQoL. Impaired cognitive function, poorer HRQoL and increased disease severity were associated with depression in patients. In carers, avoidance coping was associated with depression and cognitive impairment in the patient being cared for. These findings demonstrate the complex relationship in PD between impairment, quality of life, depression, cognitive function and the coping styles adopted by patients and carers. The study also highlights the difficulties in measuring these interactions with quantitative outcome measures.

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Caregiver strain and factors associated with caregiver self-efficacy and quality of life in a community cohort with multiple sclerosis

Purpose. To describe the level of caregiver strain and factors associated with caregiver self-efficacy and quality of life (QoL) in a community cohort with multiple sclerosis (MS).

Method. A cross-sectional survey of 62 informal caregivers and 101 participants with confirmed MS and quantified physical and cognitive disability recruited from a tertiary hospital MS database. Structured interviews conducted at home using standardized assessments to measure: (i) Caregiver strain and subjective burden of care; (ii) participant with MS and caregiver QoL and self-efficacy; and (iii) participant with MS level of depression, anxiety and stress.

Results. The mean caregiver age was 54 years (range 37 – 62). The mean caregiver strain score was 5.63 (SD 3.63). Twenty-six of 62 (42%) caregivers reported strain for items such as emotional adjustments, demands on time, change in personal plan and disrupted sleep. Caregiver burden was higher in those caring for the more severely affected persons with MS, especially those with higher depression, anxiety and stress levels. The caregiver strain correlated with a lower QoL in both the person with MS and their caregiver, but not with their self-efficacy scores.

Conclusion. Caregivers of persons with MS reporting high levels of caregiver strain experienced a lower QoL and were caring for persons with MS with a lower QoL and higher levels of depression and anxiety. Interventions to reduce caregiver strain and burden in those at risk are necessary to reduce poor outcomes among both caregivers and care recipients with MS.

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The nature and scope of stressful spousal caregiving relationships

The caregiving literature provides compelling evidence that caregiving burden and depressive symptoms are linked with stressful care relationships, however, relational difficulties around caregiving are seldom described in the literature. This article presents findings from content analysis of baseline interviews with 40 Alzheimer’s disease (AD) and Parkinson’s disease (PD) spousal caregivers enrolled in a home care skill-training trial who identified their care relationship as a source of care burden. Disappointment and sadness about the loss of the relationship; tension within the relationship; and care decision conflicts within the relationship were recurrent themes of relational stress in caregiving. These spousal caregivers had relationship quality scores below the mean and burden and depressive symptom scores above the means of other caregivers in the study. These findings provide support for developing dyadic interventions that help spouses manage relational losses, care-related tensions, and care decision-making conflicts.

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Rural carers online: A feasibility study

Objective: To test the feasibility (for a potential randomised controlled trial) of a computer intervention for improving social interaction and promoting the mental health of rural carers.

Design: The study combined pre- and post-intervention measures with interviews to determine the feasibility of the intervention and the acceptability of the study design to participants. The intervention consisted of providing 14 rural carers with computers and a 4-week training program on basic computer skills, using email and the Internet.

Setting: The study was conducted in a rural community setting.

Participants: The carers were 12 women and two men, aged from 50 to 81 years, with an average of 65.5 years.

Main outcome measures: Measures of social isolation (UCLA Loneliness Scale), depression (Geriatric Depression Scale), carer burden (Zarit Burden Interview) and computer confidence were taken at baseline and at a 3-month follow-up. Interviews were completed at follow-up to discuss outcomes of the study. A focus group discussion was conducted with 11 participants to discuss the study and resolve computer issues.

Results: Most carers reported increased confidence in email and Internet use. There was improvement for most participants in depressive symptoms and social isolation, but little change in carer burden. Participants identified many social benefits associated with the computer intervention, such as intergenerational connection, community building, skills and confidence and preparation for the future.

Conclusion: The intervention was found to be practical and acceptable for a group of older carers. It was concluded that it would be feasible to conduct a large randomised controlled trial of the intervention.

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A terminal diagnosis: the carers' perspective

This qualitative study explored the views of spouse carers in relation to the emotional impact of caring for a partner with a chronic or terminal illness. The study population consisted of nine full-time spouse carers, recruited using a snowball sampling strategy.

Semi-structured interviews took place in the carers’ homes. These were recorded and transcribed verbatim. The data were then analysed using constant comparative analysis. Themes identified included the emotional and physical health of the carer, personality changes in the spouse, relationship issues, denial, anticipating death, accessing support and coping strategies. Findings indicate that these carers experienced a whole range of feelings and emotions, which impacted on their health and well-being. They included fatigue, stress, distress, anxiety, depression, feelings of isolation and suicidal thoughts. These were particularly profound around the time of diagnosis, end of treatment, during a relapse and most particularly around the time of death. An increasing number of terminally ill people are now expressing a preference to be cared for at home. The potential risks to the health of caregivers therefore need to be taken into account. This study highlights the importance of assessing the needs of carers in order to identify those at risk of compromised health, which would then allow those requiring support to be offered prompt referral to specialist services.

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Supported cognitive-behavioural self-help versus treatment-as-usual for depressed informal carers of stroke survivors (CEDArS): study protocol for a feasibility randomized controlled trial

Background: Increased life expectancy has resulted in a greater provision of informal care within the community for patients with chronic physical health conditions. Informal carers are at greater risk of poor mental health, with one in three informal carers of stroke survivors experiencing depression. However, currently no psychological treatments tailored to the unique needs of depressed informal carers of stroke survivors exist. Furthermore, informal carers of stroke survivors experience a number of barriers to attending traditional face-to-face psychological services, such as lack of time and the demands of the caring role. The increased flexibility associated with supported cognitive behavioral therapy self-help (CBTsh), such as the ability for support to be provided by telephone, email, or face-to-face, alongside shorter support sessions, may help overcome such barriers to access. CBTsh, tailored to depressed informal carers of stroke survivors may represent an effective and acceptable solution.

Methods/Design: This study is a Phase II (feasibility) randomized controlled trial (RCT) following guidance in the MRC Complex Interventions Research Methods Framework. We will randomize a sample of depressed informal carers of stroke survivors to receive CBT self-help supported by mental health paraprofessionals, or treatment-as-usual. Consistent with the objectives of assessing the feasibility of trial design and procedures for a potential larger scale trial we will measure the following outcomes: a) feasibility of patient recruitment (recruitment and refusal rates); (b) feasibility and acceptability of data collection procedures; (c) levels of attrition; (d) likely intervention effect size; (e) variability in number, length and frequency of support sessions estimated to bring about recovery; and (f) acceptability of the intervention. Additionally, we will collect data on the diagnosis of depression, symptoms of depression and anxiety, functional impairment, carer burden, quality of life, and stroke survivor mobility skill, self-care and functional ability, measured at four and six months post-randomization.

Discussion: This study will provide important information for the feasibility and design of a Phase III (effectiveness) trial in the future. If the intervention is identified to be feasible, effective, and acceptable, a written CBTsh intervention for informal carers of stroke survivors, supported by mental health paraprofessionals, could represent a cost-effective model of care.

Trial registration: Current Controlled Trials ISRCTN63590486.

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Exploring the risk management strategies of informal carers of mental health service users

This paper presents the finding of an exploratory study examining the risk management strategies of informal carers of mental health service users. Thirteen carers from two cities were interviewed in depth using a semi-structured interview schedule. Participants had been informal carers between four and 20 years and supported users with formal diagnoses of schizophrenia, manic depression and depression. A grounded theory approach was followed to collect and examine data and to test the resulting models of risk management. Three models of risk management are discussed and relate to a wide range of risk posed and faced by the carers' users. The results of this study are compared with those of an earlier study into the risk management strategies of 22 service users with similarities and differences highlighted. 40 refs. [Abstract]

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Exploring the other side of cancer care: the informal caregiver

Objectives: To identify the caregiver outcomes among relatives caring for patients with cancer and to examine the patient and family caregiver variables that predicted for caregiver burden and depression.

Methods: One hundred and thirty caregivers completed the Greek versions of the Burden Interview (BI), the Center of Epidemiology – Depression Scale (CES-D) and the Ways of Coping Questionnaire. Principal component analysis was performed to examine the underlying dimensions of caregiver outcome measures. One-way ANOVA and independent sample t-tests were used to test for differences in burden and depression in relation to demographic variables of interest. One-way ANOVA was used for examining differences in coping strategies.

Findings: One-way ANOVA showed that there are significant differences among the various educational levels (p<0.001) and the income (p<0.005) of the caregiver in terms of overall burden. 66.4% of caregivers had a depression above the usual cutoff point for depression. An independent samples t-test for possible gender differences, showed that there is a significant difference between males and females (p=0.29). In regression analysis it was found that only caregiver's income and patient's age are statistically significant in predicting burden and depression. When considering high-burdened caregivers results showed that there are significant differences in the use of coping strategies (p<0.001).

Conclusions:Caregivers reported high levels of burden and depression. These outcomes of caregiving are related to several variables, but the caregiver's income and patient's age are predictive. Intervention strategies are needed to the vulnerable caregivers to help reduce burden and depression associated with caregiving.

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Primary caregivers of cancer patients in the palliative phase: a path analysis of variables influencing their burden

Research has shown that several variables influence the burden of primary caregivers of cancer patients staying at home in the palliative phase, but the associations between these variables have hardly been explored. The aim of this study was to examine the associations of theory-driven variables with the caregivers’ burden by means of path analysis. The sample consisted of 96 caregivers of cancer patients in the palliative phase staying at home recruited from a hospital trust in Norway. The dimensions of burden from the Caregiver Reaction Assessment, namely self esteem, lack of family support, impact on finances, and impact on daily schedule, were used as the dependent variable. The following independent variables were tested in the models: the patients’ levels of pain, fatigue, and nausea; and the caregivers’ physical quality of life, anxiety and depression, and social support.

The Partial Least Squares approach to structural equation modelling was used for the path analysis. Model 1 shows the direct associations between the independent variables and the dependent variable, explaining 16% of the variance in caregiver burden. Model 1 supports the finding that only caregivers’ depression has a direct significant association with caregiver burden, and shows further that the effects of the other independent variables on burden are mediated through depression. In Model 2, anxiety and depression are mediating factors between three other independent variables and caregiver burden, and 12% of the variance is explained. Model 2 supports none of the independent variables as antecedents of burden. Testing of the models suggested that caregivers’ depression was the main factor associated with caregiver burden, but also an important mediator of indirect associations of indirect associations of caregivers’ anxiety and physical health.

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Specialist clinical assessment of vulnerable older people: outcomes for carers from a randomised controlled trial

‘Caring for carers’ is high on the United Kingdom policy agenda for community care. Although recent policy advocates the provision of services directly to the carer, research suggests that an alternative way of helping carers is through targeting enhanced services towards the cared-for person. This paper reports a randomised controlled trial of the effects on carer distress of an additional specialist clinical assessment for vulnerable older people at risk of residential or nursing home placement. The sample was composed of 142 informal carers of older people, randomly assigned to receive either the additional specialist assessment or the usual social services assessment. Carers were assessed using the modified Social Behaviour Assessment Schedule (SBAS), and data were also collected on older peoples' service use throughout the study period. Regression analyses indicated that changes in older peoples' behaviour, as opposed to carer or service-related factors, predicted changes in carer distress, and that the carers of the older people who experienced depressive symptoms received the greatest benefit from the specialist assessment. The study suggests that an effective means of improving outcomes for carers may be to target services towards the distressing behaviours of the person for whom they care, with symptoms of depression being particularly important.

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A systematic review of networked technologies supporting carers of people with dementia

We conducted a systematic review of the effectiveness of networked ICT interventions in supporting carers of people with dementia. Five bibliographic databases were searched and a total of 1,456 abstracts were identified as potentially relevant. From these we identified 15 papers describing five interventions: ComputerLink, AlzOnline, Caring for Others and two studies from the REACH project (TLC and CTIS). The interventions reviewed were multifaceted with elements of networked peer support. Outcomes were inconsistent but suggested that the interventions had moderate effects on improving carer stress and depression. Treatment effects were found to vary with care-giver characteristics such as ethnic groups, formal support and baseline burden. Further evaluation is needed in robust trials with good follow-up. 

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Unmet needs of outpatients with late-life depression; a comparison of patient, staff and carer perceptions

Background: There is evidence that late life depression is associated with high levels of unmet needs. Only a minority of the depressed patients appears to be adequately treated.

Methods: Ninety-nine older patients (58–92 years), 96 informal carers and 85 health-care professionals were recruited from six outpatient facilities for old age psychiatry in the Netherlands and interviewed to identify met and unmet needs, using the Camberwell Assessment of Needs for the Elderly (CANE). The severity of depression was measured with the Montgomery Åsberg Depression Rating Scale (MADRS).

Results: On average patients scored more unmet needs than staff and carers. On item level, patients and staff showed the highest agreement in the psychological needs category. Patient and carers showed the highest agreement on physical health needs. Logistic regression showed that severe depression is a significant predictor of low concordance between stakeholders on a substantial number of CANE items.

Limitations: Kappa coefficients were computed to determine agreement between parties involved. However, Kappa coefficients should be interpreted with caution, especially when obvious disparity in unmet needs scores between groups of interest can be observed.

Conclusion: Home dwelling older patients with major depressive disorder, their practitioners and their informal carers have different perceptions of the older patients unmet needs.Practitioners should be aware of the negative impact of depression severity on reaching agreement regarding unmet needs and its possible consequences for mutual goal setting and compliance.

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Caregiver burden in an elderly population with depression in São Paulo, Brazil

Background: Mental disorders are among the most prevalent chronic conditions in old age, depression being the most widespread. The aim of this study was to examine the burden and distress reported by carers of elderly patients with depression. Method: Patients aged 60 or over starting outpatient treatment for depression and their relatives were included. Patients were assessed for the severity of depressive symptoms, behaviour and mood disturbance, and abilities of daily living. Relatives were assessed for burden and emotional distress. Results:Eighty-two patients and their relatives were included. Levels of carers' burden were high. Multiple linear regression showed that patients' behaviour and mood disturbance and relatives's emotional distress scores were independently associated with relatives' burden. Conclusions: Levels of burden were similar to those found in studies with carers of elderly people with dementia, indicating that depressive symptoms can be considered an important source of distress for caregivers.

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Improving caregiving competence, stress coping, and mental well-being in informal dementia carers

AIM: To study the effectiveness of Reitman Centre “Coaching, Advocacy, Respite, Education, Relationship, and Simulation” (CARERS) program, which uses problem-solving techniques and simulation to train informal dementia carers.

METHODS: Seventy-three carers for family members with dementia were included in the pilot study. Pre- and post-intervention data were collected from carers using validated measures of depression, mastery, role captivity and overload, caregiving competence and burden, and coping styles. To assess program effectiveness, mean differences for these measures were calculated. One-way ANOVA was used to determine if change in scores is dependent on the respective baseline scores. Clinical effects for measures were expressed as Cohen’s D values.

RESULTS: Data from 73 carers were analyzed. The majority of these participants were female (79.5%). A total of 69.9% were spouses and 30.1% were children of the care recipient. Participants had an overall mean age of 68.34 ± 12.01 years. About 31.5% of participating carers had a past history of psychiatric illness (e.g., depression), and 34.2% sustained strained relationships with their respective care recipients. Results from carers demonstrated improvement in carers’ self-perception of competence (1.26 ± 1.92, P < 0.0001), and significant reduction in emotion-focused coping (measured by the Coping Inventory of Stressful Situations, -2.37 ± 6.73, P < 0.01), Geriatric Depression scale (-0.67 ± 2.63, P < 0.05) and Pearlin’s overload scale (-0.55 ± 2.07, P < 0.05), upon completion of the Program. Secondly, it was found that carers with more compromised baseline scores benefited most from the intervention, as they experienced statistically significant improvement in the following constructs: competence, stress-coping style (less emotion-oriented), sense of mastery, burden, overload.

CONCLUSION: Study results supported the effectiveness of the CARERS Program in improving caregiving competence, stress coping ability and mental well-being in carers caring for family members with dementia.

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Self-esteem in carers of frail older people: resentment predicts anxiety and depression

Objectives: Anxiety and depression are major health problems for carers of frail older people. Positive reactions to caregiving have been shown to protect people against anxiety and depression. The aims of this study are to explore specific aspects of self-esteem, termed positive caregiving reactions, and examine its relationship with caregiving anxiety and depressive symptoms.

Method: A cross-sectional study of a cohort of carers (n = 119) of community-living people (≥70 years) identified empirically as frail completed postal questionnaires. Positive caregiver reactions were evaluated using the self-esteem subscale (seven items) of the Caregiver Reaction Assessment (CRA). Anxiety and depressive symptoms were measured using the Hospital Anxiety and Depression Scale.

Results: Anxiety and depressive symptoms were related significantly (p < 0.05) to six of the seven CRA self-esteem items. Caregiving resentment scores were relatively low, mean score (SD) 1.79 (0.91) on a 1–5 scale with higher scores indicating more resentment: yet regression analysis revealed that this factor was the only independent predictor of anxiety and depressive symptoms (r 2 = 0.093, p = 0.044 for anxiety, and r 2 = 0.121, p = 0.041 for depression).

Conclusion: The results of this study indicate that those carers who resent having to care for their frail older relative are susceptible to anxiety and depressive symptoms. This study supports the notion that there is a need for assessment of caregiving reactions in carers of frail older people.

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Awareness of carer distress in people with dementia

Objectives: People caring for family members who have dementia often experience considerable levels of anxiety and depression. However, relatively little is known about the awareness of carer distress among people with dementia. This study investigated whether or not people with dementia are aware of the level of distress experienced by their carers.

Method: Two groups of participants were studied, a dementia group and a control group of people with arthritis. Each group consisted of pairs of people, the person with dementia or arthritis and the family member who acted as their main carer; 40 pairs participated in total. For both groups, the carer's psychological health was rated by the carer themselves and by the care-recipient, using the Hospital Anxiety and Depression Scale. For the dementia group, memory functioning in the person with dementia was rated by the care-recipient themselves and by the carer, using the Memory Function Scale. The ratings made by the carer and care-recipient were compared to give an indication of the level of awareness in the care-recipient.

Results: People with dementia have a significant level of awareness of their carers' state of psychological health. Their awareness follows the same pattern as that shown by a control group of people with arthritis. The level of awareness of carer psychological health shown by the dementia group was not related to their level of awareness of their own memory difficulties.

Conclusion: The clinical implications of awareness of carer distress in people with dementia should be considered. Copyright © 2009 John Wiley & Sons, Ltd.

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The relationships between depression and other outcomes of chronic illness caregiving

Background: Many caregivers with chronically ill relatives suffer from depression. However, the relationship of depression to other outcomes of chronic caregiving remains unclear. This study tested a hypothesized model which proposed that hours of care, stressful life events, social support, age and gender would predict caregivers' outcomes through perceived caregiver stress. Depression was expected to mediate the relationship between perceived stress and outcomes of chronic caregiving (physical function, self-esteem, and marital satisfaction).

Methods: The sample for this secondary data analysis consisted of 236 and 271 subjects from the Americans' Changing Lives, Wave 1, 1986, and Wave 2, 1989, data sets. Measures were constructed from the original study. Structural equation modeling was used to test the hypothesized model, and an exploratory structural modeling method, specification search, was used to develop a data-derived model. Cross-validation was used to verify the paths among variables.

Results: Hours of care, age, and gender predicted caregivers' outcomes directly or through perceived caregiver stress (p < .01). Depression mediated the relationship between perceived stress and psychological outcomes and explained 40% and 11% of the variance in self-esteem and marital satisfaction, respectively.

Conclusion: Depression predicted psychological outcomes. Whether depression predicts physical health outcomes needs to be further explored.

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Caregivers' relationship closeness with the person with dementia predicts both positive and negative outcomes for caregivers' physical health and psychological well-being

Closer relationships between caregivers and care recipients with dementia are associated with positive outcomes for care recipients, but it is unclear if closeness is a risk or protective factor for the health and psychological well-being of caregivers. We examined 234 care dyads from the population-based Cache County Dementia Progression Study. Caregivers included spouses (49%) and adult offspring (51%). Care recipients mostly had dementia of the Alzheimer's type (62%). Linear mixed models tested associations between relationship closeness at baseline or changes in closeness prior to versus after dementia onset, with baseline levels and changes over time in caregiver affect (Affect Balance Scale, ABS), depression (Beck Depression Inventory, BDI), and mental and physical health (components of the Short-Form Health Survey, SF-12). After controlling for demographic characteristics of the caregiver, number of caregiver health conditions, and characteristics of the care recipient (type of dementia, functional ability, and behavioral disturbances), we found that higher baseline closeness predicted higher baseline SF-12 mental health scores (better mental health) and lower depression. Higher baseline closeness also predicted greater worsening over time in ABS and SF-12 mental health. In addition, caregivers who reported a loss of closeness in their relationship with the care recipient from pre- to post-dementia displayed improved scores on ABS and SF-12 mental health, but worse SF-12 physical health over the course of the study. These results suggest that closeness and loss of closeness in the care dyad may be associated with both positive and adverse outcomes for caregivers, both cross-sectionally and over time.

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Perceptions of Giving Support and Depressive Symptoms in Late Life

Purpose of the Study: Research shows that parents benefit psychologically from generativity—giving and caring for the next generation—but older adults’ perceptions on giving support to their children are rarely if ever explored in these studies. The current study examines the association between the support that aging parents give to one of their middle-aged offspring, their perception of this support as rewarding or stressful, and their levels of depressive symptoms.

Design and Methods: The sample draws from The Family Exchanges Study and consisted of 337 older parents (mean age: 76) who were drawn from a larger study of middle-aged adults (i.e., target participants). Older parents reported tangible and nontangible forms of support given to the target middle-aged child and the extent to which they viewed providing such support as stressful and/or rewarding.

Results: We found significant interactions between tangible support and feelings of reward and between nontangible support and feelings of stress in explaining parental depressive symptoms. Parents who found giving support to be highly rewarding had lower levels of depressive symptoms when giving high amounts of tangible support. Conversely, parents who view giving support to be highly stressful had higher levels of depressive symptoms when they gave low amounts of nontangible support.

Implications: Findings suggest older parents’ perceptions of supporting their offspring may condition how generativity affects their mental health.

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Caring for a relative with chronic fatigue syndrome : difficulties, cogntion and acceptance over time

The present study explored the difficulties experienced by carers of chronic fatigue syndrome (CFS) sufferers, their cognitions, and their efforts to accept the illness. Semi-structured interviews were conducted with 17 carers to study these issues, retrospectively, over three stages: before the diagnosis of CFS, shortly after the diagnosis, and at present. Surprisingly, the results suggested that carers, several of them absent from home during the day, felt that their lives were only minimally constrained by the illness. Nevertheless, all carers reported specific coping efforts to manage both the illness and their own distress, and indicated that they learned to accept the illness over time. However, acceptance appeared to be a form of resignation rather than a positive appreciation of the illness. In light of the uncertainties surrounding the origin of CFS and carers’ apparent confusion, the results obtained in the present study are significant in that they increase our understanding of CFS carers’ quality of life, their efforts to cope with the illness, and the physical and emotional help they may provide to the sufferer. Such information can be usefully employed in the increasing development of counselling interventions and instrumental support networks that involve both sufferers and their carers.

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End of life care: why supporting family carers is vital

This film looks at the family support service for the families and carers of people who are at the end of their lives at Leicestershire and Rutland Hospice. Social workers work with other staff members to identify families who are in need of support. They can offer a sitting service to enable carers to have some time away from their caring responsibilities and bereavement support and counselling to those who have lost a loved one. In the film Benita, who looks after her mother, talks about the support she receives from a regular sitter. Trevor, a bereaved man, explains how he was initially reluctant to have counselling but came to find it helpful and supportive in dealing with his grief. This film was previously available under the title 'End of life care: supporting the carers', revised in 2014.

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Long-term effects of bereavement and caregiver intervention on dementia caregiver depressive symptoms

Purpose: The purpose of this study was to examine the joint effects of bereavement and caregiver intervention on caregiver depressive symptoms. 

Design and Methods: Alzheimer's caregivers from a randomized trial of an enhanced caregiver support intervention versus usual care who had experienced the death of their spouse (n = 254) were repeatedly assessed with the Geriatric Depression Scale prior to and following bereavement. Random effects regression growth curve analyses examined the effects of treatment group and bereavement while controlling for other variables.  

Results: The death of the care recipient led to reductions in depressive symptoms for both caregiving groups. Enhanced support intervention led to lower depressive symptoms compared with controls both before and after bereavement. Post-bereavement group differences were stronger for caregivers of spouses who did not previously experience a nursing home placement. These caregivers maintained these differences for more than 1 year after bereavement. Caregivers who received the enhanced support intervention were more likely to show long-term patterns of fewer depressive symptoms before and after bereavement, suggesting resilience, whereas control caregivers were more likely to show chronic depressive symptoms before and after the death of their spouse. 

Implications:  Caregiver intervention has the potential to alter the long-term course of the caregiving career. Such clinical strategies may also protect caregivers against chronic depressive symptoms that would otherwise persist long after caregiving ends.

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Day care for persons with dementia: an alternative for whom?

Day care, as a type of care in between residential care and home help, has been available for several years, and is often referred to as an adequate alternative form of care for people with dementia. The goals of Swedish day care are to create a meaningful day for participants, offer family caregivers respite, and provide care for persons with dementia. The aim of this Swedish study was to describe day care clients with dementia problems over a 12-month period, and to discuss what distinguished those who discontinued day care from those who stayed with it. Of the clients, 76 percent were diagnosed by a doctor as having dementia between level one and four out of a total of six levels, according to the Berger rating scale of severity of senility. The results showed that one third of the people with dementia discontinued within four months. Another third dropped out within 12 months. People with behavioral problems and those who needed assistance with dressing and toileting discontinued earliest. All caregivers found some benefit of day care for their relatives and for themselves, with the exception of some caregivers of those who ended within four months. Most of the clients who lived alone at the start of day care, and ended within 12 months, went to a nursing home. Two differing conclusions may be drawn from the findings: (1) that offering day care services to persons with dementia who also show signs of behavioral problems is questionable; or (2) that the planning of day care in Sweden should be adjusted to also meet the needs of persons with behavioral problems, such as depression. In its current form, day care in Sweden seems only partially to fulfil its goals.

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Quality of life and depression in carers of patients with early onset dementia

Objective: To investigate the quality of life (QoL) and depression and its correlates in carers living with early onset dementia (EOD) patients.

Method: The subjects were 49 carers, either married to or cohabiting with EOD patients, 38 with Alzheimer's disease and 11 with other types of dementia. The Quality of Life – Alzheimer Disease scale (QoL-AD) and Geriatric Depression Scale – 15 items (GDS-15) were used.

Results: The mean QoL score for the carers was 37.9 (SD 5.5) and the mean GDS-15 score 5.1 (SD 2.9). Linear regression analyses with QoL and GDS-15 score as dependent variables were performed. Increased age of the carer (B = 0.32) and greater insight of the patients (B = −0.186) were significantly associated with a better QoL for the carer. Being married (B = 2.10), having children together with the patient (B = 1.61) and being the carer of a patient with cardiovascular disease (B = 2.28) were associated significantly with a higher GDS-15 score, whereas being the carer of a patient who received domiciliary nursing care (B = −2.29) was significantly associated with a lower GDS-15 score.

Conclusion: The QoL for carers of EOD patients corresponds positively with the increased age of carers and with patients’ insight into their condition. Increased depressive symptomatology in carers was associated with being married, having offspring and caring for a patient with dementia and a co-morbid cardiovascular disease. A reduction in depression was seen in carers when the patients received domiciliary nursing care.

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Using postal questionnaires to identify carer depression prior to initial patient contact

AIMS AND METHOD To assess whether postal questionnaires, used as a local initiative, were useful in identifying carer depression allowing early support for community-dwelling carers of older adults with mental health needs. The Geriatric Depression Scale and a questionnaire collecting information on the carer’s circumstances were sent to carers of consecutive patients routinely referred to a community mental health team for older adults in south London. Rates of carer depression between postal questionnaire responders and non-responders were compared.

RESULTS The response rate to the postal questionnaires (33%) was similar to that observed in other postal studies; 42% of responders had depression compared with only 4.6% of non-responders.

CLINICAL IMPLICATIONS Pre-contact postal questionnaires may present a simple method of enhancing early detection of carer depression for minimal economic outlay.

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Screening cancer patients' families with the distress thermometer (DT): a validation study

Although family members of cancer patients are at great risk of experiencing psychological distress, clinical tools to assist with recognizing and intervening with appropriate psychosocial care are sparse. This study reports on the first validation of the distress thermometer (DT) as a screening instrument for symptoms of depression and anxiety in family members of cancer patients. The DT was administered with the Hospital Anxiety and Depression Scale (HADS) in a sample of 321 family members. Receiver operating characteristics (ROC) demonstrated that the DT has good diagnostic utility relative to the HADS (area under the curve= 0.88 relative to the HADS anxiety scale; 0.84 relative to the HADS depression scale, respectively). The ROC curves indicate that using a cut-off of 4/5 maximizes sensitivity (86.2% HADS anxiety scale; 88.2% HADS depression scale) and specificity (71.2% HADS anxiety scale; 67.6% HADS depression scale); however, the alternative lower cut-off of 3/4 increases sensitivity (94.1% for both scales) and hence reduces the risk of missing distressed family members (specificity is 62.9% for HADS anxiety scale; 59.1% for HADS depression scale). The results offer validation of the DT for screening family members of cancer patients and support its use for clinical assessment. Distress screening with DT for family members of cancer patients is a promising and efficient approach to integrating family members in the program of care and provides the first step toward meeting their unmet needs with referral for supportive services. Copyright © 2008 John Wiley & Sons, Ltd.

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Mental health of carers

This report presents the findings of a survey of the mental health of carers living in England. The survey was commissioned by the Department of Health and was carried out between March and July 2001. It is one of a series of surveys of different population groups which began in 1993. The sample for the survey was obtained from people who were identified as carers on the basis of questions included in the 2000 General Household Survey. This report describes the extent to which carers experience mental health problems, such as depression, anxiety and phobias, and identifies a number of factors which are associated with increased levels of such symptoms. It considers a range of factors, such as the socio-demographic characteristics of the carer themselves, their health, the characteristics of those they care for, and the support they receive in their caring role. The report also considers to what extent those carers with mental health problems receive treatment. The report includes a description of the survey methods used and aims to provide an overview of the main topics covered.

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Formal support for informal caregivers to older persons with dementia through the course of the disease : an exploratory, cross-sectional study

BACKGROUND: In European countries, knowledge about availability and utilization of support for informal caregivers caring for older persons (≥65 years) with dementia (PwD) is lacking. To be able to evaluate and develop the dementia support system for informal caregivers to PwD, a survey of European support systems and professionals involved is needed. The aim of this study was to explore support for informal caregivers to PwD in European countries. We investigated the availability and utilization of support in each of the participating countries, and the professional care providers involved, through the dementia disease.

METHODS: A mapping system was used in 2010-2011 to gather information about estimations of availability, utilization, and professional providers of support to informal caregivers caring for PwD. Data collected was representing each country as a whole.

RESULTS: There was high availability of counselling, caregiver support, and education from the diagnosis to the intermediate stage, with a decrease in the late to end of life stage. Utilization was low, although there was a small increase in the intermediate stage. Day care and respite care were highly available in the diagnosis to the intermediate stage, with a decrease in the late to end of life stage, but both types of care were utilized by few or no caregivers through any of the disease stages. Professionals specialized in dementia (Bachelor to Master's degree) provided counselling and education, whereas caregiver support for informal caregivers and day care, respite care, and respite care at home were provided by professionals with education ranging from upper secondary schooling to a Master's degree.

CONCLUSIONS: Counselling, caregiver support, and education were highly available in European countries from diagnosis to the intermediate stage of the dementia disease, decreasing in the late/end of life stages but were rarely utilized. Countries with care systems based on national guidelines for dementia care seem to be more aware of the importance of professionals specialized in dementia care when providing support to informal caregivers. Mapping the systems of support for informal caregivers of PwD is a valuable tool for evaluating existing systems, internationally, nationally and locally for policy making.

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Community-based organizations for vulnerable children in South Africa: Reach, psychosocial correlates, and potential mechanisms

Community-based organizations (CBOs) have the potential to provide high quality services for orphaned and vulnerable children in resource-limited settings. However, evidence is lacking as to whether CBOs are reaching those who are most vulnerable, whether attending these organizations is associated with greater psychosocial wellbeing, and how they might work. This study addressed these three questions using cross-sectional data from 1848 South African children aged 9–13. Data were obtained from the Young Carers and Child Community Care studies, which both investigated child wellbeing in South Africa using standardized self-report measures. Children from the Child Community Care study were all CBO attenders, whereas children from Young Carers were not receiving any CBO services, thereby serving as a comparison group. Multivariable regression analyses were used to test whether children attending CBOs were more deprived on socio-demographic variables (e.g., housing), and whether CBO attendance was in turn associated with better psychosocial outcomes (e.g., child depression). Mediation analysis was conducted to test whether more positive home environments mediated the association between CBO attendance and significantly higher psychological wellbeing. Overall, children attending CBOs did show greater vulnerability on most socio-demographic variables. For example, compared to children not attending any CBO, CBO-attending children tended to live in more crowded households (OR 1.22) and have been exposed to more community violence (OR 2.06). Despite their heightened vulnerability, however, children attending CBOs tended to perform better on psychosocial measures: for instance, showing fewer depressive symptoms (B = − 0.33) and lower odds of experiencing physical (OR 0.07) or emotional abuse (OR 0.22). Indirect effects of CBO attendance on significantly better child psychological wellbeing (lower depressive symptoms) was observed via lower rates of child abuse (B = − 0.07) and domestic conflict/violence (B = − 0.03) and higher rates of parental praise (B = − 0.03). Null associations were observed between CBO attendance and severe psychopathology (e.g., suicidality). These cross-sectional results provide promising evidence regarding the potential success of CBO reach and impact but also highlight areas for improvement.

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Effectiveness of cognitive-behavioural family intervention in reducing the burden of care in carers of patients with Alzheimer's disease

Background The majority of patients with Alzheimer's disease live outside institutions and there is considerable serious psychological morbidity among their carers.

Aims To evaluate whether family intervention reduces the subjective burden of care in carers of patients with Alzheimer's disease and produces clinical benefits in the patients.

Method A prospective single-blind randomised controlled trial with three-month follow-up in which the experimental group received family intervention and was compared with two control groups.

Results There were significant reductions in distress and depression in the intervention group compared with control groups at post-treatment and follow-up. There were significant reductions in behavioural disturbance at post-treatment and an increase in activities at three months in patients in the intervention group. Based on an improvement on the General Health Questionnaire resulting in a carer converting from a case to a non-case, the number to treat was three immediately post-treatment and two at follow-up.

Conclusions Family intervention can have significant benefits in carers of patients with Alzheimer's disease and has a positive impact on patient behaviour.

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Children and Adolescents Providing Care to a Parent with Huntington's Disease: Disease Symptoms, Caregiving Tasks and Young Carer Well-Being

Background: Over 30,000 people in the U.S. have Huntington’s disease (HD), a disorder with numerous complicated, long-lasting and stigmatizing symptoms. Caregiving typically falls to the family, yet little is known about the caregiving experience of children and adolescents in the home.

Objective: Guided by the stress process model, this exploratory study sought to describe children and adolescents who care for a parent with HD and their caregiving experience, by detailing previously unknown relationships between caregiving, parent/child conflict, school problems, and psychological well-being of child/adolescent caregivers.

Methods: This cross-sectional study used semi-structured interviews with a purposive sample of 40 children and adolescents, aged 12–20, who care for a parent with HD. Data was analyzed using descriptive and correlational statistics. Measures included the Children’s’ Depression Inventory, The Conflict Behavior Questionnaire, and the Multidimensional Assessment of Caring Activities.

Results: Study participants have substantial caregiving responsibilities (>11), with half providing personal care to a parent. The majority experienced school problems and conflict with parents (60 and 92 % respectively). Caregiving tasks were associated with problems with school and conflict with the ill parent. Furthermore, parental symptoms were associated with poor psychological wellbeing, parental conflict, and school problems for the caregivers.

Conclusion: Children and adolescents are involved in numerous tasks and describe difficulties with their daily life and well-being. Results highlight the need for the development of support services for caregivers, as well best care practices for problematic HD symptoms. Study outcomes address minimizing the potential for negative caregiving experiences of these vulnerable caregivers.

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A comparison of elderly day care and day hospital attenders in Leicestershire: client profile carer stress and unmet need

Traditionally, day care for elderly persons has been provided by health or social services; however, recently facilities have been developed by voluntary organizations. This study was conducted to examine the characteristics of elderly clients with mental health problems attending these various settings, and to identify any areas of unmet need. One hundred and twenty-nine clients attending ten different day care facilities and their carers were interviewed in a standardized manner.There were both similarities and important differences between clients attending day hospitals, social services and Age Concern day centres. Day centres had a higher proportion of cognitively impaired clients than day hospitals. Although there were similar rates of depression across all settings, the severity of depression was greater in those attending Age Concern day centres. Patients at day hospitals suffering from dementia were more likely to be psychotic or behaviourally disturbed. The reasons for these differences are discussed in detail. Carers and clients were generally satisfied with services, though professionals were less satisfied. There is a need for joint planning and commissioning of day care to provide maximum flexibility and co-ordination of services.

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The unmet spiritual needs of caregivers of patients with advanced cancer

Approximately 1,500 people a day die of cancer. Most are cared for by an informal caregiver. The purpose of this study was to identify the unmet spiritual needs of informal caregivers and explore the relationships between the patient's symptom distress, caregivers' unmet needs, and caregivers' depressive symptomatology at the time of admission to hospice. The sample consisted of 110 caregivers of hospice home care patients with cancer. The Spiritual Needs Inventory and Center for Epidemiological Studies Depression Scale were administered to caregivers of newly admitted patients. The Memorial Symptom Assessment Scale was administered to patients. Regression analysis and correlations were calculated. An average score of 56.4 (possible range, 17-85) on the Spiritual Needs Inventory with a range of 0 to 13 unmet needs was reported by caregivers. Frequently cited as needed or unmet needs were those that related to outlook in life. Caregiver outlook, religious practices, and patient distress score predicted 17% of the variance in the unmet needs score. The unmet needs scores were significantly related (F [1,106] = 13.41) with the caregivers' Center for Epidemiological Studies Depression Scale scores. The study concluded that caregivers have specific spiritual needs that are not being met. Routine assessment of unmet spiritual needs facilitates caring for caregivers. To provide good end-of-life care, assessment of spiritual needs with a standardized instrument is recommended.

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Service utilisation by carers of people with dementia in rural Victoria

Aim: To explore the use of community and dementia-specific services by informal carers caring for someone with dementia in a rural setting.

Methods: Carers of people with dementia were recruited through a variety of rural community services and invited to complete a survey related to the utilisation of community services.

Results: A total of 39 carers completed surveys. Despite 84% reporting use of the Aged Care Assessment Service and 61% reporting provision of printed information on the services available, less than half of the carers utilised commonly available support services. Only 46% received financial compensation for their carer role.

Conclusions: Rural carers of care recipients with behavioural and psychological symptoms of dementia underutilise community services. Services that may assist with carer stress and depression and services that provide advice on the management of distressing behavioural and psychological symptoms of dementia were utilised by less than half of the carers surveyed.

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The influence of end-of-life cancer care on caregivers

The purpose of this secondary analysis was to glean from prospective data whether those caring for elderly family members recently diagnosed with cancer who ultimately died reported different caregiver depressive symptomatology and burden than caregivers of those who survived. Findings from interviews with 618 caregivers revealed that caregiver depressive symptomatology differed based on family members' survival status, and spousal caregivers experienced greater burden when a family member was near death than did non-spousal caregivers. Family member symptoms and limitations in daily living, as well as caregiver health status, age, and employment, were associated with caregiver depressive symptomatology and burden; however, these associations had no interaction with family member survival status. © 2007 Wiley Periodicals, Inc. 

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Silent, invisible and unacknowledged: experiences of young caregivers of single parents diagnosed with multiple sclerosis

The study's rationale: Most people diagnosed with multiple sclerosis (MS) choose to live at home without known consequences for their children.

Aims and objectives: To study the personal experience of being a young caregiver of a chronically ill parent diagnosed with MS.

Methodological design and justification: Phenomenology was the methodological approach of the study since it gives an inside information of the lived experience.

Ethical issues and approval: The study was approved by the National Bioethics Committee and reported to the Data Protection Authority.

Research methods: We explored in 21 interviews the lived experience of 11 young caregivers who had cared for single chronically ill parents, diagnosed with MS.

Results: The participants felt silent, invisible and unacknowledged as caregivers and received limited professional assistance. They were left to provide their parents with intimate physical and emotional care and support that was demanding, embarrassing and quite difficult while feeling unsupported, excluded and abandoned. Their caring responsibilities lead to severe restrictions in life as their parents' disease progressed and they lived without a true childhood; left to manage far too many responsibilities completely on their own and at a young age. At the time of the interviews, most of the participants had left their post as primary caregivers. They were learning to let go of the emotional pain, some of them with a welcomed partner. Most of them were experiencing a healthy transition and personal growth, existentially moving from feeling abandoned towards feeling independent. However, some of them were still hurting.

Study limitations: In choosing participants for the study a sampling bias may have occurred.

Conclusions: Health professionals are urged to provide information, support and guidance for young carers in a culturally sensitive way and to take on the leading role of helping and empowering children and adolescents in similar situations.

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A retrospective study of the behavioural and psychological symptoms of mid and late phase Alzheimer's disease

Aim: To document the behavioural and psychological symptoms in patients with a diagnosis of established Alzheimer's disease (AD) for at least 3 years.

Methods: Patients with a ≥3 year history of AD (NINCDS/ADRDA) were recruited from old age psychiatrist and elderly care memory clinics. Information regarding duration of symptoms and non-cognitive symptomatology was obtained during interview with a carer or next-of-kin who had contact with the patient at least 3 times a week and for at least 3 years. MMSE, FAST and NPI including caregiver distress, were used to assess cognition, function and behavioural/psychological disturbance respectively. With each non-cognitive symptom the carer was asked to estimate its onset.

Results: The mean age of patients was 77 years and duration of illness 87 months. Mean MMSE was 8/30 and FAST score 6d. Of the psychological symptoms occurring at any stage, depression (56%), delusions (55%) and anxiety (52%) were most common, with hallucinations, elation and disinhibition occurring less frequently. In general, behavioural changes were more common with apathy occurring in 88% of patients, motor behaviour in 70%, aggression in 66%, irritability and appetite changes in 60% and sleep disturbance in 54%. All symptoms except apathy became less common when the carer was asked if they were still present in the last month. Mean onset of psychological symptoms was 47 months. Mean onset of behavioural symptoms was 48 months. Behavioural disturbance seemed to cause more care-giver distress than psychological change.

Conclusion: The results show behavioural and psychological symptoms in AD are common and distressing for carers. They appear to require a consistent period of neurodegeneration in order to emerge. Copyright © 2003 John Wiley & Sons, Ltd.

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Nightmare or needed strategy?

The authors draw on their experience as a counsellor and counselling service manager working for the Dementia Care Trust, an organisation that specialises in providing counselling for carers in their home space. They look at the perceived strengths and weaknesses of counselling in the home, including client commitment, client and counsellor safety and boundaries. They also highlight the benefits of working within the clients context and environment.

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Family carers’ distress and abusive behaviour: longitudinal study

Background A third of family carers of people with dementia report abusive behaviour towards the person for whom they are caring. This is the first longitudinal study to investigate such behaviour. Aims To test our hypotheses that carers’ reports of abusive behaviour would increase over time, and that change in abuse scores would be predicted by change in anxiety and depression scores. Method In total, 131 (71.6%) of the family/friend dementia carers consecutively recruited from new referrals to Essex and London community mental health teams who were interviewed at baseline, completed the revised Modified Conflict Tactics Scale to measure abuse 1 year later.

Results Sixty-three (48.1%) of the carers reported any abusive behaviour at baseline compared with 81 (61.8%) a year later (χ2 = 6.9, P = 0.009). An increase in abuse scores was predicted by an increase in anxiety and depressive symptoms (respectively β = 0.32, t = 3.9, P<0.001 and β = 0.24, t = 2.9, P = 0.005), and by less domiciliary care at baseline (β = –0.18, t = –2.2, P = 0.031).

Conclusions Most abusive behaviour reported by carers at baseline persisted or worsened in the following year, despite contact with specialist services. We suggest that trials of psychological interventions shown to reduce anxiety and depression in the carers of people with dementia are needed to determine whether they also reduce elder abuse, and can be delivered cost-effectively within the National Health Service (NHS).

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Prevalence and predictors of carer burden and depression in carers of patients referred to an old age psychiatric service

Background: Too little is currently known about the prevalence of and risk factors for depression and carer strain among informal carers of community-dwelling elderly mentally ill. This study seeks to assess the prevalence of depression, using the Geriatric Depression Scale-15 (GDS-15), the degree of carer burden/strain, and their risk factors among the primary informal carers of patients referred to our community-based old age psychiatry service.

Methods: A cross-sectional study design was used, with the subjects comprising 100 primary informal carers of patients who live at home and were referred to our service. The main carer measures were the GDS-15 and an adapted version of Gilleard's Strain Scale. Patients were assessed the Clifton Assessment Procedure for the Elderly–Survey version, the GDS-15 and the Mini-mental State Examination.

Results: Depression was found in 21% of the carers (a score of 5 or more on the GDS-15). The more problem behaviors identified and the greater the functional impairment of the patient, the higher the strain score deciles and the more likely the carer was to be depressed. Spouses were associated with lower carer strain scores. Patient diagnoses did not affect carer depression or carer strain.

Conclusion: We found high levels of depression in the primary carers of community-dwelling patients attending an old age psychiatric service. The patients' behavior and their cognitive and functional ability conferred greater risk of carer depression or strain than their diagnosis. These risk factors may help identify carers at risk of strain and depression.

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Social inclusion for the mental health of informal caregivers of Alzheimer disease's patients: The role of reemployment strategies of socially excluded

Alzheimer's disease (AD) is a one of the leading cause of dependency among older adults and of institutionalization in Europe. The number of people with AD is estimated in 10 million people and the cost of the disease has been recently estimated in 100.000 million of euros per year in the European Union (European Brain Council, 2011). There is nowadays no effective treatment of the disease. Currently, care of AD patients is primary sustained by informal caregivers who suffer burden as a result of their care responsibilities, and consequently are mainly affected by mental health problems (depression, anxiety, etc). This burden is also related with a premature institutionalization and violence against AD patients. In this sense, effective solutions are needed in order to fight against the mental health problems of informal caregivers. Regarding this, a social innovation research, funded by the Progress Programme of the DG of Employment, Social Affairs and Inclusion of the European Commission, is being developed currently in France and Spain, where the authors are aimed to demonstrate how a specialized formal training in AD addressed to people in risk of labour and social exclusion could improve the quality of life of AD patients and reduce the informal caregiver burden. The results of this research is specially relevant to help to reduce mental health problems of the informal carers of AD patients, but also in terms of intervene on the cognitive skills of the persons affected, as well as to allow the employment of socially excluded people.

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How do proxies' perceptions of patients' pain, anxiety, and depression change during the bereavement period?

The retrospective approach in palliative care research provides valuable insight into death and dying, and the effectiveness of palliative care. The method involves collecting information from proxies (usually significant others) after the patient's death. This exploratory study investigates whether proxies' accounts differ during bereavement, and provides possible explanations for why discrepancies might occur. Thirteen bereaved family members were interviewed, at three to five months and seven to nine months after the patient's death, about the patient's pain, anxiety, and depression, using semi-structured interviews and the symptom rating scale from the Views of Informal Carers-Evaluation of Services (VOICES) interview. Analysis of VOICES ratings over time indicated consistency for anxiety, while pain and depression ratings were variable and, in many cases, less severe and less frequent with the passage of time. Qualitative analysis of proxies' interview transcripts revealed a number of categories and themes that could be explained within the psychological and palliative care literature. The findings suggest that timing is an important consideration when gathering information from proxies retrospectively.

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Development and psychometric properties of the Glasgow Depression Scale for people with a learning disability

Background There is no reliable and valid self-report measure of depressive symptoms for people with learning disabilities. Aims To develop a scale for individuals with learning disability, and a supplementary scale for carers. Method Items were generated from a range of assessment scales and through focus groups. A draft scale was piloted and field tested using matched groups of people with or without depression, and their carers. The scale was also administered to a group without learning disabilities for criterion validation. Results The Glasgow Depression Scale for people with a Learning Disability (GDS—LD) differentiated depression and non-depression groups, correlated with the Beck Depression Inventory — II (r=0.88), had good test—retest reliability (r=0.97) and internal consistency (Cronbach's α=0.90), and a cut-off score (13) yielded 96% sensitivity and 90% specificity. The Carer Supplement was also reliable (r=0.98; α=0.88), correlating with the GDS—LD (r=0.93). Conclusions Both scales appear useful for screening, monitoring progress and contributing to outcome appraisal.

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Caregiver Assessment of Support Need, Reaction to Care, and Assessment of Depression

The aims of this study were to: (a) identify New Zealand informal carers' support needs; (b) assess caregivers' depression; and (c) assess positive and negative aspects of caregiving. A sample of 287 carers from throughout New Zealand was recruited by advertisements in carer support organizations literature, in 2008. Data were collected using Centre for Epidemiologic Short Depression scale (CES-D10), Caregivers Reaction Assessment scale (CRA), and open-ended questions. Carer burden was significant (p ≤ .01) in the 60 to 69 age group. The relationship between CRA and CES-D10 in carers in the 50 to 59, 60 to 69 carer age groups; and 0 to 29, 60 to 69, 70 to 79, and 80 plus care recipient age groups were also significant. Mean burden was highest in the 50 to 59 age group (77/120) with depression mean highest in the 30 to 39 age group (14/30). Carers commonly discussed the adverse effects of caregiving on identity, lifestyle, health, and financial situation. Lack of information, poor respite care, and combining work with care were major frustrations. If the government wishes to successfully pursue initiatives allowing people to remain at home, more resources are needed to adequately support carers.

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Clinical effectiveness of a manual based coping strategy programme (START, STrAtegies for RelaTives) in promoting the mental health of carers of family members with dementia : pragmatic randomised controlled trial

Objective To assess whether a manual based coping strategy compared with treatment as usual reduces depression and anxiety symptoms in carers of family members with dementia. Design Randomised, parallel group, superiority trial. Setting Three mental health community services and one neurological outpatient dementia service in London and Essex, UK. Participants 260 carers of family members with dementia.

Intervention A manual based coping intervention comprising eight sessions and delivered by supervised psychology graduates to carers of family members with dementia. The programme consisted of psychoeducation about dementia, carers’ stress, and where to get emotional support; understanding behaviours of the family member being cared for, and behavioural management techniques; changing unhelpful thoughts; promoting acceptance; assertive communication; relaxation; planning for the future; increasing pleasant activities; and maintaining skills learnt. Carers practised these techniques at home, using the manual and relaxation CDs.

Main outcome measures Affective symptoms (hospital anxiety and depression total score) at four and eight months. Secondary outcomes were depression and anxiety caseness on the hospital anxiety and depression scale; quality of life of both the carer (health status questionnaire, mental health) and the recipient of care (quality of life-Alzheimer’s disease); and potentially abusive behaviour by the carer towards the recipient of care (modified conflict tactics scale).

Results 260 carers were recruited; 173 were randomised to the intervention and 87 to treatment as usual. Mean total scores on the hospital anxiety and depression scale were lower in the intervention group than in the treatment as usual group over the eight month evaluation period: adjusted difference in means −1.80 points (95% confidence interval −3.29 to −0.31; P=0.02) and absolute difference in means −2.0 points. Carers in the intervention group were less likely to have case level depression (odds ratio 0.24, 95% confidence interval 0.07 to 0.76) and there was a non-significant trend towards reduced case level anxiety (0.30, 0.08 to 1.05). Carers’ quality of life was higher in the intervention group (difference in means 4.09, 95% confidence interval 0.34 to 7.83) but not for the recipient of care (difference in means 0.59, −0.72 to 1.89). Carers in the intervention group reported less abusive behaviour towards the recipient of care compared with those in the treatment as usual group (odds ratio 0.47, 95% confidence interval 0.18 to 1.23), although this was not significant.

Conclusions A manual based coping strategy was effective in reducing affective symptoms and case level depression in carers of family members with dementia. The carers’ quality of life also improved. Trial registration Current Controlled Trials ISCTRN70017938.

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Caregiver burden : A clinical review

Importance  Caregiver burden may result from providing care for patients with chronic illness. It can occur in any of the 43.5 million individuals providing support to midlife and older adults. Caregiver burden is frequently overlooked by clinicians.

Objectives  To outline the epidemiology of caregiver burden; to provide strategies to diagnose, assess, and intervene for caregiver burden in clinical practice; and to evaluate evidence on interventions intended to avert or mitigate caregiver burden and related caregiver distress.

Evidence  Cohort studies examining the relation between demographic and social risk factors and adverse outcomes of caregiver burden were reviewed. Review of recent meta-analyses to summarize the effectiveness of caregiver burden interventions were identified by searching Ovid MEDLINE, AgeLine, and the Cochrane Library.

Results  Risk factors for caregiver burden include female sex, low educational attainment, residence with the care recipient, higher number of hours spent caregiving, depression, social isolation, financial stress, and lack of choice in being a caregiver. Practical assessment strategies for caregiver burden exist to evaluate caregivers, their care recipients, and the care recipient’s overall caregiving needs. A variety of psychosocial and pharmacological interventions have shown mild to modest efficacy in mitigating caregiver burden and associated manifestations of caregiver distress in high-quality meta-analyses. Psychosocial interventions include support groups or psychoeducational interventions for caregivers of dementia patients (effect size, 0.09-0.23). Pharmacologic interventions include use of anticholinergics or antipsychotic medications for dementia or dementia-related behaviors in the care recipient (effect size, 0.18-0.27). Many studies showed improvements in caregiver burden–associated symptoms (eg, mood, coping, self-efficacy) even when caregiver burden itself was minimally improved.

Conclusions and Relevance  Physicians have a responsibility to recognize caregiver burden. Caregiver assessment and intervention should be tailored to the individual circumstances and contexts in which caregiver burden occurs.

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Pause for thought

Carers are often too wrapped up in their duties to think about their needs. This article reports on a pilot project in Kensington and Chelsea, run by charity wpf Counselling and Psychotherapy and funded by the council. The project aimed to offer carers of older people and people with mental health problems counselling to help them gain independence. The article also contains a brief case study.

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Psychopathological features in patients with Parkinson's disease and related caregivers’ burden

BACKGROUND: Along with classical motor disorders in Parkinson's disease (PD), psychopathological features frequently co-occur, which may increase the caregiver's burden.

AIMS: To identify the profile of psychopathological symptoms in patients with PD and the impact imposed by this condition on the caregiver's burden.

SUBJECTS: Fifty patients with idiopathic PD seen consecutively at the Movement Disorder Outpatient Clinic at the Hospital of State University of Campinas, Brazil, and their 50 respective caregivers were studied.

METHODS: The 50 patients with PD were divided into three groups according to the respective psychiatric diagnosis received (depression: N = 17, dementia: N = 13 and non-depressed and non-demented: N = 20). We divided the caregivers into three groups according to the mental condition of their patients. To assess the mental condition of patients and the caregiver's burden, and to correlate those psychopathological features found with clinical features of PD, we applied the Neuropsychiatric Inventory (NPI).

RESULTS: Patients with dementia presented the highest NPI scores of psychopathological symptoms (26.4), followed by patients with depression (24.9). Non-depressed and non-demented patients revealed fewer symptoms (7.2). Caregivers' burden was found to be proportional to the degree of patients' symptomatology.

CONCLUSION: Patients with dementia presented more severe motor impairment and lower functionality, followed by patients with depression and those non-demented, non-depressed. Psychotic symptoms, agitation, aberrant motor behaviours and sleep disturbances were higher in dementia group. Neuropsychiatric disturbances correlated with caregiver's burden, which was highest in patients with dementia.

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Autism spectrum disorder in adults: diagnosis and management

Clinical guideline which provides best practice advice on the care of adults with autism. The guidance covers the following key areas: general principles of care; identification and assessment; and interventions for autism, challenging behaviour, coexisting mental disorders. Assessment and interventions for families, partners and carers and organisation and delivery of care are also covered. Recommendations for future research include the need for more evidence on the clinical and cost effectiveness of: self-help for anxiety and depression, cognitive behavioural therapy for anxiety disorders and pharmacological treatments for depression in adults with autism. The full guideline, 'Autism: the NICE guideline on recognition, referral, diagnosis and management of adults on the autism spectrum' contains details of the methods and evidence used to develop the guideline.

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Prevalence, disability and need in adults with severe learning disability

Evidence from a variety of sources suggests that there has been an increase of around 1% per annum in the prevalence of learning disability (LD) in adults over the last 35 years, due mainly to increases in survival. This trend is likely to continue for at least another ten years. Ninety‐six percent of adults notified to the Leicestershire LD register have an estimated IQ below 50 or need supervision every day to remain safe. Three‐quarters have additional significant disabilities including behaviour problems, psychological symptoms, physical dependencies or epilepsy. In one quarter the behaviour problem poses a major challenge to the achievement of an ordinary life. Two‐thirds indicate a need for help from one or other specialist. Informal carers are actively providing care for nearly half the adults, but a quarter are not content with care‐giving. Carers Report 40% more limiting health problems than their counterparts in the general population, in particular depression in women and cardiovascular problems in men. The specific areas of unmet need among carers Reporting depression are for financial help, long‐term social support and medical advice. Resource allocation for this client group needs to be reviewed in the light of substantial and unrecognised increases in prevalence which are continuing to occur, and the need for long‐term support.

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The coexistence of well- and ill-being in persons with multiple sclerosis, their caregivers and health professionals

BACKGROUND: Studies on emotional distress and health-related quality of life (HRQOL) broadened the traditional bio-medical focus in MS research, but little attention was paid to general well-being indicators.

OBJECTIVE: To investigate for the first time both ill-being and well-being dimensions in persons with MS (PwMSs), caregivers and health professionals, in relation to both health and life in general.

METHODS: A multi-center study assessed participants' depression (Beck Depression Inventory-II), HRQOL (Short Form-36), psychological well-being (Psychological Well-Being Scales), optimal experience (Flow Questionnaire), life satisfaction (Satisfaction with Life Scale), hedonic balance (Positive Affect and Negative Affect Schedule). Demographic and clinical information was also gathered.

RESULTS: Overall, 71 PwMSs, 71 caregivers and 26 professionals were enrolled (N=168). Compared to healthy populations, PwMSs reported higher depression, lower HRQOL and lower general well-being; caregivers presented higher depression and lower general well-being; professionals reported the best ill- and well-being profiles. However, after controlling for demographic differences in age and education, hierarchical regressions highlighted that, though PwMSs reported higher depression and lower HRQOL than caregivers and professionals, their general well-being substantially leveled off.

CONCLUSIONS: Well-being coexists with ill-being. It can counterbalance the negative effects of disease or caregiving, and its measurement could complement and support medical intervention. Copyright © 2013 Elsevier B.V. All rights reserved.

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Emotional and Tangible Reciprocity in Middle- and Older-Aged Carers of Adults With Intellectual Disabilities

Reciprocal benefits may exist in relationships between carers and their adult sons/daughters with intellectual disabilities, but the topic has not been widely studied. The present study investigated whether older carers of adult children with intellectual disabilities perceive emotional and tangible reciprocity in their relationships and the association between perceived reciprocity with quality of life. The authors surveyed 91 parental carers (aged 50+ years, mean = 60.8). Bivariate correlations and hierarchical regression analyses assessed the relationship between tangible and emotional reciprocity and carer quality of life variables (physical and mental health, depressive symptomatology, life satisfaction) and carers' desire for an alternative residential situation of their son/daughter. Overall, more tangible and emotional support was given than received from their adult children. However, despite varying levels of intellectual disability and functional impairments of their care recipient, carers did report receiving considerable support. Relative disadvantage (i.e., giving more than received) in tangible reciprocity was associated with increased depressive symptomatology and poorer mental health but also reduced desire for seeking an alternative residential situation for the person for whom they are caring. These relationships were attenuated after covariance analyses. Emotional reciprocity was not associated with any of the outcome measures. The results suggest that perceptions of reciprocity are relevant in caregiving for intellectual disability and may be an underappreciated asset in coping with caregiving.

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Efficacy and experiences of telephone counselling for informal carers of people with dementia

Background: Informal carers of people with dementia can suffer from depressive symptoms, emotional distress and other physiological, social and financial consequences.

Objectives: This review focuses on three main objectives: To: 1) produce a quantitative review of the efficacy of telephone counselling for informal carers of people with dementia; 2) synthesize qualitative studies to explore carers’ experiences of receiving telephone counselling and counsellors’ experiences of conducting telephone counselling; and 3) integrate 1) and 2) to identify aspects of the intervention that are valued and work well, and those interventional components that should be improved or redesigned.

Search methods: The Cochrane Dementia and Cognitive Improvement Group's Specialized Register, The Cochrane Library, MEDLINE, MEDLINE in Process, EMBASE, CINAHL, PSYNDEX, PsycINFO, Web of Science, DIMDI databases, Springer database, Science direct and trial registers were searched on 3 May 2011 and updated on 25 February 2013. A Forward Citation search was conducted for included studies in Web of Science and Google Scholar. We used the Related Articles service of PubMed for included studies, contacted experts and hand-searched abstracts of five congresses.

Selection criteria: Randomised controlled trials (RCTs) or cross-over trials that compared telephone counselling for informal carers of people with dementia against no treatment, usual care or friendly calls for chatting were included evaluation of efficacy. Qualitative studies with qualitative methods of data collection and analysis were also included to address experiences with telephone counselling.

Data collection and analysis: Two authors independently screened articles for inclusion criteria, extracted data and assessed the quantitative trials with the Cochrane 'Risk of bias' tool and the qualitative studies with the Critical Appraisal Skills Program (CASP) tool. The authors conducted meta-analyses, but reported some results in narrative form due to clinical heterogeneity. The authors synthesised the qualitative data and integrated quantitative RCT data with the qualitative data.

Main results: Nine RCTs and two qualitative studies were included. Six studies investigated telephone counselling without additional intervention, one study combined telephone counselling with video sessions, and two studies combined it with video sessions and a workbook. All quantitative studies had a high risk of bias in terms of blinding of participants and outcome assessment. Most studies provided no information about random sequence generation and allocation concealment. The quality of the qualitative studies ('thin descriptions') was assessed as moderate. Meta-analyses indicated a reduction of depressive symptoms for telephone counselling without additional intervention (three trials, 163 participants: standardised mean different (SMD) 0.32, 95% confidence interval (CI) 0.01 to 0.63, P value 0.04; moderate quality evidence). The estimated effects on other outcomes (burden, distress, anxiety, quality of life, self-efficacy, satisfaction and social support) were uncertain and differences could not be excluded (burden: four trials, 165 participants: SMD 0.45, 95% CI -0.01 to 0.90, P value 0.05; moderate quality evidence; support: two trials, 67 participants: SMD 0.25, 95% CI -0.24 to 0.73, P value 0.32; low quality evidence). None of the quantitative studies included reported adverse effects or harm due to telephone counselling. Three analytical themes (barriers and facilitators for successful implementation of telephone counselling, counsellor's emotional attitude and content of telephone counselling) and 16 descriptive themes that present the carers’ needs for telephone counselling were identified in the thematic synthesis. Integration of quantitative and qualitative data shows potential for improvement. For example, no RCT reported that the counsellor provided 24-hour availability or that there was debriefing of the counsellor. Also, the qualitative studies covered a limited range of ways of performing telephone counselling.

Authors' conclusions: There is evidence that telephone counselling can reduce depressive symptoms for carers of people with dementia and that telephone counselling meets important needs of the carer. This result needs to be confirmed in future studies that evaluate efficacy through robust RCTs and the experience aspect through qualitative studies with rich data.

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Anxiety and depressive symptoms in caregivers of multiple sclerosis patients: The role of information processing speed impairment

Background: Multiple sclerosis (MS) patients have high rates of complications and disability, including cognitive impairment, that often, impact on caregivers' emotional health. Clarification may help identify improved supportive strategies for both caregivers and patients.

Objective: We aimed to analyse whether MS domain-specific cognitive impairment can influence the severity of psychiatric symptoms of MS caregivers.

Methods: Patients with definite MS (n = 63) and their corresponding caregivers (n = 63) were recruited. In addition, 59 matched controls were enrolled for establishing normative cognitive data. Each patient underwent a complete neuropsychological testing for cognitive impairment and thorough clinical assessment, including data of disability status (EDSS), affective and emotional symptoms (depression, anxiety, anger) and fatigue. Psychiatric symptoms of the caregivers were assessed with the Beck Anxiety Inventory (BAI) and the Beck Depression Inventory (BDI).

Results: In logistic regression analyses, even after controlling for other MS-related symptoms, cognitive deficits, namely impairment on Symbol Digit Modalities Test (OR = 8.03, 95% CI = 1.27–25.33, p = 0.027) and on the Paced Auditory Serial Addition Test (OR = 6.86, 95% CI = 1.07–21.97, p = 0.042), were significant and independent predictors of more severe caregivers' depressive symptoms.

Conclusions: Information processing speed impairment is independently associated with more severe depressive symptoms of caregivers of MS patients, thereby reflecting a further deterioration of family setting.

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Support to family carers of patients with frontotemporal dementia

OBJECTIVES: To examine the provision of support to patients with frontotemporal dementia (FTD) and their family carers compared with patients with early onset Alzheimer's dementia (AD) and their carers, and the carers' satisfaction with the support. METHOD: Data came from 60 dyads of patients with dementia and their principal family carers, 23 subjects with frontotemporal dementia and their 23 carers, and 37 subjects with early onset Alzheimer's disease and their 37 carers. RESULTS: Patients with a frontotemporal dementia diagnosis were significantly more frequently offered stays in nursing homes (p = 0.04). Carers of patients with frontotemporal dementia were significantly less satisfied with the provision of information about the disease compared with carers of early onset Alzheimer's disease patients (p = 0.05) and were significantly less satisfied with counseling and follow-up advice (p = 0.05). CONCLUSION: Changes of personality in patients with frontotemporal dementia may be the major reason why they were offered more stays in institutions. These family carers tend to be less satisfied with the provision of support they received from the specialist health service compared to carers of Alzheimer's disease patients, and are in need of more, and other forms of support.

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Quality of end-of-life care for non-cancer patients in a non-acute hospital

Aims and objectives.  Few surveys have been carried out documenting the quality of life for non-cancer patients in general district hospitals reaching the final trajectory towards death. We carried out a survey of 80 patients facing the final stages of their chronic illness as well as their carers and hospital staff.

Background.  With increasing life expectancy, a large majority of patients are older, where palliative care principles for patients with cancer are equally applicable. Few surveys have been carried out documenting the quality of life for non-cancer patients in general district hospitals reaching the final trajectory towards death in terms of patients’ and carers’ perspective, compared with the more extensive literature for patients with cancer.

Design.  Survey.

Methods.  Assessment tools include symptom check list, geriatric depression scale, Chinese Death Anxiety Inventory and the McGill Quality of Life Questionnaire for patients; SF-12 and the Chinese cost of care index for informal carers; and the Chinese Maslach Bumout and Death Anxiety Inventories for hospital staff.

Results.  Lower-limb weakness (92·5%), fatigue (86·2%), oedema (85%), dysphagia (58·2%) and pain (48·8%) were the most common symptoms in this group of patients. The mean Chinese Caregiver Stress Index score was 45·93 (SD 6·45) (maximum score = 80). For staff, the mean SF-12 physical component score was lower than the Hong Kong population average.

Conclusion.  The findings suggest that there is room for improvement in the quality of end-of-life care.

Relevance to clinical practice.  Patients in the final stages of many chronic illnesses have high prevalence of symptoms comparable to those of patients with cancer. Raising awareness and improving training for all health care professionals, formulating guidelines and care pathways and incorporating quality of care as key performance indicators are measures to improve the quality of end-of-life care.

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A stress process model of family caregiver service utilization: factors associated with respite and counseling service use

This study examines whether caregivers' differential utilization of respite and counseling support services is associated with different situational stress processes. A multinomial regression analysis was conducted to compare respite users, counseling users, and those who used neither service, using data collected on a statewide random sample of 1,643 California caregivers providing assistance to individuals aged 50 or older. Compared with caregivers who used neither service, respite service users were more likely to have demanding care situations giving rise to physical symptoms of stress, and were more likely to use community services for the care recipient to augment their care. In contrast, counseling service users were more likely to be managing the meaning of their care situation by seeking out information about services and talking with a confidant about their situation, while coping with both emotional and physical symptoms of stress. Tailoring caregiver interventions to meet the support needs and coping strategies stemming from diverse caregiving situations and caregiver characteristics may increase the likelihood that those interventions will be effective in alleviating or preventing deleterious secondary stress frequently experienced by family caregivers.

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Informal carers' health-related quality of life and patient experience in primary care: evidence from 195,364 carers in England responding to a national survey

Background: We aim to describe the health-related quality of life of informal carers and their experiences of primary care.

Methods: Responses from the 2011-12 English General Practice Patient Survey, including 195,364 informal carers, were analysed using mixed effect logistic regressions controlling for age, gender, ethnicity and social deprivation to describe carer health-related quality of life (mobility, self-care, usual activities, pain, and anxiety/depression, measured using EQ-5D) and primary care experience (access, continuity and communication).

Results: Informal carers reported poorer health-related quality of life than non-carers of similar age, gender, ethnicity and social deprivation. Increasing caring commitment was associated with worse EQ-5D scores, with carers of 50+ hours a week scoring 0.05 points lower than non-carers (95 % CI 0.05 to 0.04), equivalent to 18 fewer days of full health annually. Considering each domain of EQ-5D separately, carers of 50+ hours/week were more likely to report pain OR = 1.53 (1.50-1.57), p < 0.0001, and anxiety/depression OR = 1.69 (1.66-1.73), p < 0.0001, than non-carers. Younger carers scored lower on EQ-5D than non-carer peers but the converse was true among over-85s. In the most deprived areas carers reported the equivalent of 37 fewer days of full health annually than carers in the most affluent areas. On average, carers reported poorer patient experiences in all areas of primary care than non-carers (odds ratios 0.84-0.97), with this difference being most marked in the domain of access.

Conclusions: Informal carers experience a double disadvantage of poorer health-related quality of life and poorer patient experience in primary care. We find no evidence for health benefits of caregiving. We recommend physicians identify and treat carer health problems, including pain and anxiety/depression, particularly among young, deprived and high time-commitment carers. Improving patient experience for carers, including access to primary care, should be a priority.

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Caregiving at the end of life: Perceptions of health care quality and quality of life among patients and caregivers

This study explored the association between perceptions of health care quality and quality of life in patients with advanced metastatic cancer and their informal caregivers (n=39). Patients' and caregivers' perceptions of health care quality, mental health, health-related quality of life, symptoms, and burden were measured. The key findings included the following: 1) patients' mental health and depression scores correlated with those of caregivers, suggesting that the mental health of patients and their caregivers are associated; 2) patients and caregivers shared similar perceptions regarding health care quality; 3) the presence of depression in caregivers correlated with caregivers being less satisfied with the health care being given to their patients (this correlation did not exist for patients, a finding that may be due in part to the protective buffering effect that caregivers provide their patients as illness progresses); and 4) a modified Primary Care Assessment Survey, originally designed for primary care patients, was a useful measure of health care assessment for both patients and caregivers. These data suggest that patients with advanced disease and their caregivers share similar perceptions and evolve as a “unit of care,” and caregivers, as unique and important members of the patient's health care team, are also in need of care. When depressed, caregivers may unilaterally lose trust by becoming less satisfied with the quality of health care being provided to their patients.

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A systematic review of the effectiveness of psychosocial interventions for carers of people with dementia

Historically, there have been many attempts to develop interventions to support the carers of people with dementia. To date the evidence of effectiveness has been limited. However, the success of psychosocial interventions for carers of people with schizophrenia has suggested the possibility of utilizing this approach. A systematic review was undertaken to assess the evidence of effectiveness for psychosocial interventions with carers of people with dementia. Thirty controlled trials that evaluated a psychosocial approach were identified. The overall methodological quality of these studies was poor, particularly with regard to sample size, and methods of random allocation. Individualized interventions that utilized problem solving and behaviour management demonstrated the best evidence of effectiveness. This approach is also closest to the effective model of psychosocial interventions currently in use with other severe and enduring illnesses. This suggests that there is scope for developing interventions, based more specifically on this model, for supporting the carers of people with dementia.

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Family fortunes.

The article informs that the community health mental health team where the author worked as a community psychiatric nurse (CPN) a few years ago had a referral from a GP for a woman in her thirties with anxiety and depression. When he went to assess this patient, he discovered that she was the daughter of a previous patient of mine--her mother having had chronic schizophrenia. Nina, the new patient, had been offered a wide range of treatments in the past but had never spoken about growing up with a mother who had schizophrenia. This area offers exciting opportunities for mental health workers. Services must ensure there are more early interventions with young carers, and less need for belated interventions with grown-up survivors of caring who may have developed adult mental health problems as a result. INSET: The Meriden Family Interventions Programme.

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Factors associated with caregiver burden in heart failure family caregivers

Fifty caregivers and 41 heart failure patients participated in a study examining the association of caregiver characteristics and the caregiving environment on caregiver burden. Using a cross-sectional design, caregivers were interviewed face-to-face using a caregiver characteristic/demographic tool designed for this study, the Centers for Epidemiological Studies Short Depression Scale, the Caregiver Reaction Assessment questionnaire, and the New York Heart Association Functional Classification Guide to obtain the caregiver's perception of patient disease severity. Patient medical records were assessed following caregiver interviews for patient demographics, comorbidities, and ejection fraction percentages. Significantly higher levels of burden were found among Caucasian caregivers, those caring for other relatives besides the patient, unemployed caregivers, and single- versus two-family caregivers (respite caregiving). Fifty-one percent of the variance in caregiver burden was accounted for by the variables caregiver advanced age, higher caregiver hours, more caregiver physical health problems, higher levels of caregiver depressive symptoms, and more patient comorbidities. This article concludes with implications for nursing practice and future research.

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Elevated depressive symptoms among caregiving grandparents.(living with chronic illness)

Objective: To determine whether caregiving grandparents are at an increased risk for depressive symptoms.

Data Source: National sample (n=10,293) of grandparents aged 53–63 years in 1994, and their spouse/partners, who took part in the Health and Retirement Study (HRS).

Study Design: Grandparents were surveyed in 1994 and resurveyed every two years thereafter, through 2000. Over that period, 977 had a grandchild move in or out of their home. These grandparents served as their own controls to assess the impact of having a grandchild in the home.

Data Extraction: Depressive symptoms were measured using an abbreviated form of the Center for Epidemiologic Studies—Depression (CES-D) scale, scored 1–8, with a score ≥4 associated with depression “caseness.”

Principal Findings: At the time of the 1994 interview, 8.2 percent of grandparents had a grandchild in their home. However, there was substantial variation across demographic groups (e.g., 29.4 percent of single nonwhite grandmothers, but only 2.0 percent of single white grandfathers had a grandchild in residence). The impact of having a grandchild in the home varied by grandparent demographic group, with single grandparents and those without coresident adult children experiencing the greatest probability of elevation in depressive symptoms when a grandchild was in residence. For example, single nonwhite grandmothers experienced an 8 percentage point increase in the probability of having a CES-D score ≥4 when a grandchild was in their home, compared to when a grandchild was not in their home, controlling for changes in health care, income, and household composition over time (95 percent CI=0.1 to 15.0 percentage points).

Conclusions: Grandparents have a greater probability of elevated depressive symptoms when a grandchild is in their home, versus when a grandchild is not in their home. Single women of color bear a disproportionate burden of the depression associated with caring for grandchildren. Since an increasing number of grandparents function as a de facto safety net keeping their grandchildren out of formal foster care, identifying strategies to support the health and well-being of caregiving grandparents is an emerging priority.

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Participation in socially-productive activities, reciprocity and wellbeing in later life : baseline results in England

This paper examines whether participation in social activities is associated with higher levels of wellbeing among post-retirement age people in England, and, if so, whether these relationships are explained by the reciprocal nature of these activities. Cross-sectional analysis of relationships between social activities (including paid work, caring and volunteering) and wellbeing (quality of life, life satisfaction and depression) was conducted among participants of one wave of the English Longitudinal Study of Ageing (ELSA) who were of state pension age or older. Participants in paid or voluntary work generally had more favourable wellbeing than those who did not participate in these activities. Caring was not associated with wellbeing, although female carers were less likely to be depressed than non-carers. Carers, volunteers and those in paid work who felt adequately rewarded for their activities had better wellbeing than those who were not participating in those activities, while those who did not feel rewarded did not differ from non-participants. These results point to the need to increase the rewards that older people receive from their productive activities, particularly in relation to caring work.

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Care coordination assisted by technology for multiethnic caregivers of persons with dementia : a pilot clinical demonstration project on caregiver burden and depression

We evaluated a care-coordination project assisted by a screen-phone to support and educate caregivers. A total of 113 caregivers of home-dwelling veterans with dementia were recruited to the study: 72 were white, 32 were African American and nine were Hispanic. Caregivers were assessed for burden, depression, coping, quality of life, knowledge and satisfaction. None of the outcome measures changed significantly after twelve months. Forty care-recipient and caregiver dyads responded to the twelve-month telephone satisfaction survey. The respondents were more satisfied with the care-coordination (90 per cent) aspect of the programme than the education (77 per cent) or the monitoring (50 per cent). The pilot project suggests that care coordination aided by screen-phones may be a useful model for caregiver support in a managed-care setting. A systematic study is now required. 1 fig. 2 tables 20 refs. 

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The experience of shame in older psychiatric patients: a preliminary enquiry

Shame is a complex set of attitudes, feelings and behaviours that tend to motivate hiding and, if provoked, can lead to conflict with others. It is also related to the exercise of power within the relationship of care and therefore may be a relevant factor if older adults are forced to accept increased dependency. There are no systematic enquiries into shame processes and older psychiatric patients. The experience of trait and situational shame and psychopathology was explored with 50 older psychiatric patients, using a range of questionnaire measures. As predicted, trait shame correlated significantly with anxiety and depression scores. There was preliminary evidence to suggest that being in need of others may be shame-provoking for some patients and may have a bearing on why some patients fear dependency, conceal symptoms and have conflicted relationships with carers.

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Self and carer perspectives of quality of life in dementia using the QoL-AD

OBJECTIVE: Quality of life (QoL) is one of the most important outcomes in improving well-being in people with dementia (PwD). The primary aim of the present study was to compare self and carer ratings of QoL in PwD and to identify the most important factors influencing self and carer ratings.

METHODS: We conducted a cross-sectional analytic study of 488 dyads using the Quality of Life in Alzheimer's Disease scale, demographics, data on self-rated health, and clinical characteristics.

RESULTS: Higher levels of self-rated health in PwD were associated with higher self-rated QoL after controlling for depression and activities of daily living. When the carer experienced less stress related to caregiving, the PwD reported better QoL. Higher carer-rated QoL was associated with less carer stress, better health for the family carer, and the PwD being of younger age. When carers lived with the PwD, and reported lower levels of depression and better functional ability for their relative, carer-rated QoL was higher.

CONCLUSIONS: The self-rated health of PwD and carers influences the ratings they make of the QoL of the PwD indicating that it is an important influence on QoL in this population. Copyright © 2014 John Wiley & Sons, Ltd.

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Mobile dementia counselling: An instrument to support informal carers in rural; areas in Germany

Studies show that comprehensive and accessible counselling for people with dementia and their informal carers can improve the informal care setting in many ways. For example, a need-oriented and early use of counselling is fundamental for using professional care services. However, many informal carers do not use counselling due to various reasons such as an information deficit and a lack of (regional) accessibility of counselling. The Rhine-Erft district, a rural area in Germany, improved its network of dementia care services by establishing a mobile gerontopsychiatric counselling with special focus on dementia. A specially equipped “counselling bus” offers free counselling at several public places in towns and villages of the district at least once a month. The main objectives of the counselling service are to give informal carers an individual and neutral overview about local care services and to raise awareness for people suffering from dementia. Using a multi-method approach, the concept “mobile dementia counselling” was evaluated with the aim to determine how mobile dementia counselling has to be designed and implemented to meet the needs of informal carers. The results show first, that mobile dementia counselling is a low-threshold and successful way to reach informal carers and to inform them about different aspects of dementia care. Second, it contributes to the improvement of their caring situation and helps to reduce the burden of care. Third, it also improves the cooperation and communication of local stakeholders regarding dementia care. Based on these and other data from the evaluation, recommendations for an effective and successful implementation of a mobile dementia counselling service will be derived.

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Determinants of unmet needs among Slovenian old population

Background: Population ageing has significant effects on societies. The organization of care for dependent old people is one of the key issues for ageing societies. The majority of care for homebound dependent old people in Slovenia is still performed by informal carers, even though the use of formal services has been increasing over the last 20 years. The proportion and characteristics of people with unmet needs are important for the development of long term care social policy.

Method: The SHARE (Survey of Health, Ageing and Retirement in Europe) survey was used to assess the determinants of care arrangements and of unmet needs of the aging population in Slovenia. Multinomial regression analysis was used to evaluate individual and contextual determinants of care arrangements and unmet needs.

Results: The proportion of older people with unmet needs is 4%. As expected, “needs” (Functional impairment OR=4.89, P=0.000, Depression OR=2.59, P=0.001) were the most important determinant, followed by the predisposing factor “age” (age OR 1.15, P=0.000) and two enabling factors, namely:“community setting and “availability of informal care within household” (Urban areas OR=.47, P=0.021; Household size 3+ OR=2.11, P=0.030).

Conclusion: This study showed that there are a proportion of older people in Slovenia with severe needs for care, which are being unmet. As shown by the importance of enabling factors, social policy should encourage the development of formal services in rural areas and elaborate policy measures for informal carers.

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Is caring a health hazard? The mental health and vitality of carers of a person with a disability in Australia

OBJECTIVE: To compare the mental health and vitality of people caring for a family member with a disability with those of the general population. Second, to identify factors experienced by carers that put them at risk of poor mental health and vitality.

DESIGN: Cross-sectional design where logistic and multiple regression analyses were used to compare rates of mental health problems and vitality between carers and the general population while controlling for demographic characteristics. In addition, logistic and multiple regression using data from the survey of carers were used to identify risk factors for poor mental health and vitality that were particular to caregiving.

PARTICIPANTS AND SETTING: A randomly selected representative survey of 1002 carers from the Australian Centrelink administrative database (June 2006) who received government payments to care for a person with a disability or severe medical condition, or a person who was frail aged. A sample of 10,223 non-carers was drawn from the fourth wave of the Household, Income and Labour Dynamics in Australia Survey, a nationally representative household panel survey (August 2004 to February 2005).

MAIN OUTCOME MEASURES: Mental health and vitality as measured by the Medical Outcomes Study 36-item Short-Form Health Survey.

RESULTS: Compared with the general population, carers were at significantly greater risk of having a mental health problem and lower levels of vitality, even after controlling for demographic characteristics. For carers, the risk factors for poor mental health and lower levels of vitality were caring for a person with a disability with higher care needs, experiencing greater levels of financial stress, lower levels of support and worse family functioning.

CONCLUSION: Carers are at greater risk of mental health problems and lower energy levels than the general population.

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Carer mentoring: A mixed methods investigation of a carer mentoring service

Background: Worldwide with ageing populations, the numbers of informal carers are likely to increase. Although being a carer is often satisfying, it can be challenging and require support. Volunteer-provided carer mentoring services where carers are supported by volunteer mentors are one such intervention. However, little is known about the impact of mentoring, carers’ experiences or the mechanisms by which these schemes may work. Previous quantitative findings have been inconsistent suggesting a different, mixed methods approach using qualitative and quantitative methods may be valuable.

Objectives: Objectives were to explore two main questions: whether mentoring had a significant positive effect on carer mentees in terms of mental health, quality of life and confidence in caring and to explore how carers experience and perceive the process and benefits of mentoring. In addition, the study aimed to suggest possible mechanisms to understand how mentoring may benefit carers.

Methods and setting: Mixed methods (quantitative questionnaires and depth interviews) investigated an established mentoring service provided by volunteer mentors. During the study period, 28 carers received mentoring. Of these, 25 carers completed structured questionnaires both before and after mentoring, to determine whether mentoring had an impact on carer wellbeing and confidence in caring. Depth interviews were also undertaken with 11 purposively sampled carers to explore how carers experience and perceive the process and benefits of mentoring.

Results: Statistically significant improvements in carer anxiety (p < 0.001), depression (p < 0.001), quality of life (p = 0.02) and confidence in caring (p < 0.05 on all dimensions except one) were found. Depth interviews revealed that carers were very positive about mentoring and highlighted many benefits. Findings suggested emotional support, information provision, problem solving facilitation and gaining new perspectives may be mechanisms by which mentoring achieves positive outcomes. Mentor personal characteristics, experiences and training are possible facilitators of the process.

Conclusions: Carer mentoring services can be a valuable form of carer support that falls somewhere between formal and informal support. Adopting mixed methods permitted greater understanding of how mentoring may benefit carers and has implications for mentor recruitment and training. The fact that mentoring can be provided by volunteer mentors makes it an attractive, potentially cost-effective means of supporting carers.

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Why do families relinquish care? An investigation of the factors that lead to relinquishment into out-of-home respite care

BACKGROUND: Families/carers relinquishing the care of family members with a disability into the care of out-of-home respite facilities is an under-researched area in the disability field. With this in mind, the aim of this study was to explore the factors that lead to families relinquishing care, the potential early indicators that families are considering relinquishment; the factors that may prevent relinquishment and the outcomes for families/carers after relinquishment occurs. METHOD: Thirty-two client files (of individuals for whom families have relinquished their care in a defined 12-month period) were reviewed for information around their relinquishment into out-of-home respite care facilities for an extended stay. Staff members involved with these families (a total of 17) were also interviewed to provide more information. RESULTS: A thematic analysis of the results found that the factors that led to relinquishment could be categorised into: (1) characteristics inherent to the individual with intellectual disability; (2) characteristics inherent to the family/carer; and (3) characteristics associated with the support context that the carer/family is currently experiencing. It was also found that families'/carers' experienced positive outcomes after relinquishment had occurred; however, feelings of guilt and mourning were initially felt. CONCLUSIONS: Extra supports (e.g. increased respite care, planning for movement of the family member into out-of-home permanent accommodation and case management) and positive interventions such as parent training were highlighted as potential strategies to achieve more lasting benefits from short-stay out-of-home respite care.

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Befriending carers of people with dementia: randomised controlled trial

Objective To evaluate the effectiveness of a voluntary sector based befriending scheme in improving psychological wellbeing and quality of life for family carers of people with dementia. Design Single blind randomised controlled trial. Setting Community settings in East Anglia and London. Participants 236 family carers of people with primary progressive dementia. Intervention Contact with a befriender facilitator and offer of match with a trained lay volunteer befriender compared with no befriender facilitator contact; all participants continued to receive “usual care.” Main outcome measures Carers’ mood (hospital anxiety and depression scale—depression) and health related quality of life (EuroQoL) at 15 months post-randomisation. Results The intention to treat analysis showed no benefit for the intervention “access to a befriender facilitator” on the primary outcome measure or on any of the secondary outcome measures. Conclusions In common with many carers’ services, befriending schemes are not taken up by all carers, and providing access to a befriending scheme is not effective in improving wellbeing. Trial registration Current Controlled Trials ISRCTN08130075.

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British Indian carers of stroke survivors experience higher levels of anxiety and depression than White British carers: findings of a prospective observational study

Carers of stroke survivors face significant burdens, and increased carer strain has negative implications for both the stroke survivor and the carer. In a prospective cohort of White British and British Indian stroke survivors and their carers, we report the incidence of carer strain in each ethnic group, describe patient and carer characteristics, and identify predictors of increased carer strain. Multidimensional outcome measures were used to assess the physical and cognitive function in stroke survivors at one month and 3-6 months from stroke onset. Levels of car strain were assessed at the same time points using the Carer Strain Index and the Hospital Anxiety and Depression Scale. Statistical significance for difference in patient and carer characteristics between White British and British Indian groups was assessed. There were no differences in levels of carer strain between the two ethnic groups. These findings will inform future research, and in turn, may help to guide population-targeted interventions aimed at reducing carer strain.

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Family support for stroke: a randomised controlled trial

BACKGROUND: Attention is currently focused on family care of stroke survivors, but the effectiveness of support services is unclear. We did a single-blind, randomised, controlled trial to assess the impact of family support on stroke patients and their carers.

METHODS: Patients with acute stroke admitted to hospitals in Oxford, UK, were assigned family support or normal care within 6 weeks of stroke. After 6 months, we assessed, for carers, knowledge about stroke, Frenchay activities index, general health questionnaire-28 scores, caregiver strain index, Dartmouth co-op charts, short form 36 (SF-36), and satisfaction scores, and, for patients, knowledge about stroke and use of services, Barthel index, Rivermead mobility index, Frenchay activities index, London handicap scale, hospital anxiety and depression scales, Dartmouth co-op charts, and satisfaction.

FINDINGS: 323 patients and 267 carers were followed up. Carers in the intervention group had significantly better Frenchay activities indices (p=0.03), SF-36 scores (energy p=0.02, mental health p=0.004, pain p=0.03, physical function p=0.025, and general health perception p=0.02), quality of life on the Dartmouth co-op chart (p=0.01), and satisfaction with understanding of stroke (82 vs 71%, p=0.04) than those in the control group. Patients' knowledge about stroke, disability, handicap, quality of life, and satisfaction with services and understanding of stroke did not differ between groups. Fewer patients in the intervention group than in the control group saw a physiotherapist after discharge (44 vs 56%, p=0.04), but use of other services was similar.

INTERPRETATION: Family support significantly increased social activities and improved quality of life for carers, with no significant effects on patients.

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A structured multicomponent group programme for carers of people with acquired brain injury: effects on perceived criticism, strain, and psychological distress

OBJECTIVES: The purpose of this study was to examine whether a brief structured multicomponent group programme for carers of people with acquired brain injury (ABI) was effective in reducing carer distress, strain, and critical comments between carer and person with an ABI compared to a waiting list control condition. DESIGN: Waiting list controlled study. Pre- and post-test design with outcomes measured at induction, at the end of the intervention, and at the 3-month follow-up.

METHODS: One hundred and thirteen carers took part in the study: 75 carers in the intervention group and 38 in the waiting list control group (2:1 ratio). All participants completed assessments of caregiver strain (Caregiver Strain Index), perceived criticism towards and from the person with an ABI (Perceived Criticism Scale), and psychological distress (Hospital Anxiety and Depression Scale). The person with an ABI was also assessed on the Functional Independence Measure/Functional Assessment Measure.

RESULTS: Using an intention to treat analysis, there were significant effects of group (intervention vs. waiting list control) at the 3-month follow-up on carers' perceptions of stress and strain resulting from caring, and perceptions of criticism received by the carer from the person with an ABI. A subsequent per-protocol analysis showed an additional reduction at 3 months in levels of criticism expressed towards the person with an ABI by the carer. There was no significant effect of the intervention on psychological distress.

CONCLUSIONS: The structured multicomponent carers programme showed beneficial effects in terms of reducing carer strain and in the reduction of elements of perceived criticism at the 3-month follow-up; however, it did not significantly affect psychological distress in carers, suggesting the need for additional support for this group of carers.

STATEMENT OF CONTRIBUTION: What is already known on this subject? A number of studies have suggested that carers of people with acquired brain injury (ABI) experience greater levels of carer burden and mental health difficulties than carers of other patient groups. Previous interventional studies on ABI are few, and such studies have diverged in the extent to which they have been oriented towards education, psychological support, or management of behavioural difficulties, making results somewhat difficult to apply in community health settings with this potential client group. What does this study add? We develop, describe, and evaluate a brief structured multicomponent carers' training and support programme for carers of people with ABI. Not all outcomes were affected positively by the intervention. While the intervention successfully reduced carer strain and critical comments, distress did not significantly reduce compared to people in a waiting list control group. Carers who were spouses/partners and carers who were parents exhibited comparable levels of strain, distress, and perceived criticism. Younger carers reported significantly higher levels of distress and carer strain at induction to the programme. The positive effects of the programme were maintained for at least 3 months, suggesting that it may have initial validity for improving some of the negative aspects of the carer experience.

© 2015 The British Psychological Society.

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Caregiver's burden, depression and support as predictors of post-stroke depression: a cross-sectional survey

To examine the effects of caregiver's burden, depression, and support on post-stroke depression (PSD), cross-sectional data were obtained from an epidemiologic survey of 225 stroke survivors and their caregivers living in Seoul, Korea. Multivariate analyses showed that, taking the clinical status of patients into account, caregiver's burden, depression and support were related to higher PSD. Perceived burden exerts adverse effects on PSD through its influence on the depression in caregivers. Hence, the care of stroke survivors that incorporates the care of caregivers is likely to reduce the risk of post-stroke depression in patients.

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Diabetes care for older people: a practical view on management

Diabetes can impose a substantial health burden on older people and their informal carers. If there is evidence of sub-optimal care planning, a lack of empowerment, or under-skilling of those delivering direct diabetes care to this group, independence of the individual will be under threat. This substantially increases the risk of a serious adverse outcome, for example hospital or care home admission. This article identifies the specific needs, treatments and assessments for functional loss and depression in older people with diabetes living in the community, those living in care homes and those in hospital. It also looks at end-of-life care and managing hypoglycaemia.

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Pilot investigation of the effectiveness of respite care for carers of an adult with mental illness

Informal carers of an adult with mental illness have asked that respite care be an integral component of mental health service provision. The present study involved a pilot investigation of the effectiveness of accessing respite care for carers of individuals with a mental illness. It was hypothesised that compared to carers who have not accessed respite care, carers who access respite care would report lower burden and distress, higher life satisfaction and better health after their use of respite care. The study used a respite care group and comparison group of respite care non-users with a pre- and post-respite assessment, and 3-month follow-up design. Participants were 20 carers recruited through carer organisations; 10 carers who accessed respite and 10 carers who had never accessed respite. As expected, the respite care group reported a decrease in burden, but unexpectedly also reported an increase in stress, whereas the comparison group did not change over time. Further research is needed to explore the potential benefits and possible risks associated with different types of respite care using large samples within randomised controlled trials in order to inform respite care policy and service planning.

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Carers Assistive Technology Service

Hull Churches Home from Hospital Service (HCHfH) has been at the forefront of bringing assistive technology into the homes of the elderly with chronic illness’ through Telehealth projects since 2008. Over that period the organisation has had a steep learning curve both in terms of introducing assistive technology to an ageing population and familiarising them with the benefits they go on to experience, building a track record in ensuring assistive technology is used and not rejected, our major work currently involves remote monitoring of clients with cardiac conditions and COPD in the community. HCHfH piloted an assistive technology project in 2013; The Carers Assistive Technology (CATs) project, aimed at supporting the local carers of dementia sufferers through the use of simple technological devices e.g. door charms, memo minders, digital photo albums and PARO the interactive seal cub. Family caregivers of people living with dementia experience a high incidence of psychological distress and physical ill-health associated with caring which can reduce their life expectancy. The dominant causes of carer’s distress include the person living with dementia associated behaviour that challenges, depression, anxiety, risk of falling, social isolation, emotional distress and continual 24 hour support without a break. In 2011 HCHfH carried out a needs analysis, “The needs of informal carers of those living with dementia.” Funded by the Department of Health, involving carers and people living with dementia. The study highlighted that family caregivers would like stimulating support for the person living with dementia and to be given confidence to take time out for themselves. The report indicated this support should be offered to them in their own homes. The pilot aim was to evaluate the use of assistive and ambient technologies in the home of a person with dementia and to measure the effectiveness of the different types of technology available, allowing respite for the carer. Maximising the dementia patient’s ability range within their own home environment, enabling the carer to have a more fulfilling lifestyle, while also facilitating their understanding of the process and evolution of End of Life Care of Dementia and the tools available to assist. By supporting the carers and the patient with their abilities and maintaining their independence in their own home the CATs project aided their understanding of dementia, its stages and the equipment that is available to help with everyday life. It offered both practical and emotional support through a team of highly skilled and suitably qualified staff and volunteers. This programme was particularly relevant as the service was driven by user needs and wishes, rather than a one-size-fits-all deployment mentality. Using assistive technology in the homes of those living with dementia provided an opportunity for the carer to take a break and have a more productive life e.g. access to health care, continue employment and maintain relationships. CATs showed how assistive technology can reduce the anxiety of a person living with dementia, keeping their brain working hard, allowing social interaction and involvement, whilst minimising the feelings of isolation and loneliness.

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Work Productivity and Health of Informal Caregivers of Persons With Advanced Cancer

The purpose of this study was to describe health promotion behaviors and work productivity loss in informal caregivers of individuals with advanced stage cancer. Using a cross-sectional, correlational design, 70 caregivers completed measures of health behaviors, mood, social support, and burden. Absenteeism and presenteeism were evaluated in employed caregivers (n = 40). Caregivers reported low levels of physical activity. The mean percentage of work productivity loss due to caregiving was 22.9%. Greater work productivity loss was associated with greater number of caregiving hours, higher cancer stage, married status, and greater anxiety, depression, and burden related to financial problems, disrupted schedule, and health. Nurses should assess caregivers and provide health promotion interventions, which may ultimately reduce the economic impact of caregiving. [Copyright John Wiley and Sons, Ltd.]

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A cognitive behavioural approach for carers of significant others with depression: a pilot study

Depression is a common and chronic illness affecting nearly one in five people in their lifetime. The main responsibility for people suffering from depression falls to their carers. Research indicates that carers find the burden of caring for a family member enormous and often feel isolated with this burden (Highet et al, 2004). This paper presents an evaluation of a six‐week course held in Leeds, based on the principles of cognitive behavioural therapy and specifically aimed for carers. Cognitive behaviour therapy (CBT) is a recognised intervention technique for people with mental distress (Beck, 1976; Beck et al, 1979). The approach was used with carers to help them to become aware of their thoughts, feelings, behaviour and physical reactions to certain stressful situations when caring for a family member. The approach was introduced within the safety of a supportive group situation. Average attendance was 84% and feedback suggested that this approach was beneficial to carers in coping with the stress of the carer role.

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Evaluation of a resilience-based intervention for children of parents with mental illness

Objective: The purpose of the present study was to evaluate the effectiveness of a group psychosocial intervention for children (aged 12–18) of a parent with mental illness (copmi).

Method: A treatment and waitlist-control design study with pre- and post-treatment, and 8 week follow up, was carried out. The treatment (n = 27) and control (n=17) groups were compared on three groups of dependent variables: intervention targets (mental health literacy, connectedness, coping strategies), adjustment (depression, life satisfaction, prosocial behaviour, emotional/behavioural difficulties), and caregiving experiences.

Results: Group comparisons failed to show statistically significant intervention effects, but reliable clinical change analyses suggested that compared to the control group, more intervention participants had clinically significant improvements in mental health literacy, depression, and life satisfaction. These treatment gains were maintained 8 weeks after treatment. Participant satisfaction data supported these treatment gains.

Conclusions: Given study limitations and the modest support for intervention effectiveness it is important that this and other similar interventions should continue to be revised and undergo rigorous evaluation.

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Health-related quality of life and attitudes to long-term care among carers of older people using social services

Family carers provide more care than the combined efforts of the NHS and social services departments, and their value to the economy is estimated to be around £34 billion a year (Hirst, 1999). However, many carers have health problems of their own. Using three standardised measures to screen for activity limitation (ADLs), depression (GHQ-28) and health related quality of life (HRQoL) (SF36), a study of carers of people aged 75 and over referred consecutively to social services departments in adjacent inner city areas showed a high prevalence of limitations in activities of daily living (ADLs), that a substantial proportion (42 per cent) had GHQ-28 scores high enough to suggest depression and their scores on the SF-36 showed that many carers were low in vitality and tired. Co-resident carers had poorer psychological health and more difficulties with social functioning than non-resident carers, and were older, but were not significantly different in self-reported physical health. Whether carers wanted the cared-for person to remain at home for as long as possible depended on their relationship (spouse or not) and whether the older person was depressed. The carer’s own psychological health was not related to their attitude to institutional care. The study suggests that targeting social care resources on carers showing psychological distress may not reduce downstream expenditure on long-term care.

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"Sometimes we get it wrong but we keep on trying": A cross-sectional study of coping with communication problems by informal carers of stroke survivors with aphasia

Background: The need to support carers of stroke survivors is widely recognised. However, research on which to base recommendations is scarce. Little research has focused on carers of stroke survivors with aphasia, and that which exists suffers from problems with sample size and methodology. More information is needed about methods used by carers to manage communication difficulties and about coping strategies that promote emotional wellbeing.

Aims: To assess the coping strategies used by informal carers of stroke survivors with aphasia to manage communication problems, and their association with depressive symptoms. To assess whether a problem-specific coping inventory offers an advantage over a generic coping questionnaire for this purpose.

Methods & Procedures: Questionnaires were completed by 150 informal caregivers of stroke survivors with aphasia. The Centre for Epidemiologic Studies Depression Scale measured depressive symptoms. Coping was assessed with the Brief COPE and a problem-specific questionnaire on coping with communication difficulties. Level of social support was also assessed. Multiple regression analysis explored associations between coping and depressive symptoms. Mediation analysis assessed the significance of the indirect effect of coping between the level of communication impairment in the stroke survivor and the degree of depressive symptoms in the carer.

Outcomes & Results: Participants reported a wide range of coping strategies. Avoidant styles of coping were associated with increased depressive symptomatology. Coping by use of positive reframing was linked with fewer symptoms of depression. Anticipated level of social support was also associated with less depressive symptomology. The level of communication impairment of the stroke survivor was not predictive of depressive symptoms in carers after controlling for coping and social support. Limited support was found for a mediating model of coping. Inclusion of one subscale from the problem-specific questionnaire improved the amount of variance accounted for in depressive symptoms, above that explained by the Brief COPE.

Conclusions: The results verify that the impairment of the stroke survivor has less effect on carers' psychosocial functioning compared to coping. Assessment of coping can help to identify carers presenting with increased risk of depression. A traditional coping inventory provides an adequate assessment of the coping strategies used to manage communication problems, and can be supplemented by specific questions about avoidance. Interventions that develop some emotion-focused coping strategies in carers may support adaptation. Interventions should also aim to decrease the use of unhelpful coping strategies rather than solely focusing on increasing problem-focused forms of coping.

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Effectiveness of computer-mediated interventions for informal carers of people with dementia-a systematic review

Caring for a friend or relative with dementia can be burdensome and stressful, and puts carers at increased risk of physical and psychological problems. A number of psychosocial interventions, some delivered by computer, have been developed to support carers. This review evaluates the outcomes of computer-mediated interventions.

PsychINFO, MEDLINE, and CINAHL Plus were searched for papers published between January 2000 and September 2012. Study quality was evaluated using a modified version of Downs and Black's (1998) checklist.

Fourteen empirical studies, evaluating a range of complex, multifaceted interventions, met inclusion criteria. The most commonly measured variables were carer burden/stress and depression. In general, higher quality studies found that interventions did have an effect on these variables. Two higher quality studies also found that anxiety was reduced following intervention. Most studies found that positive aspects of caring were increased through these interventions, as was carer self-efficacy. There were mixed results in relation to social support, and physical aspects of caring did not seem to be affected. Program impact measures indicated general acceptability of these interventions.

The findings support the provision of computer-mediated interventions for carers of people with dementia. Future studies would benefit from design improvements, such as articulating clearly defined aims, having a control group, having adequate statistical power, and measuring a greater range of factors important to carers themselves.

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A Yoga and Compassion Meditation Program Reduces Stress in Familial Caregivers of Alzheimer's Disease Patients

Familial caregivers of patients with Alzheimer's disease exhibit reduced quality of life and increased stress levels. The aim of this study was to investigate the effects of an 8-week yoga and compassion meditation program on the perceived stress, anxiety, depression, and salivary cortisol levels in familial caregivers. A total of 46 volunteers were randomly assigned to participate in a stress-reduction program for a 2-month period (yoga and compassion meditation program—YCMP group) (n=25 ) or an untreated group for the same period of time (control group) (n=21 ). The levels of stress, anxiety, depression, and morning salivary cortisol of the participants were measured before and after intervention. The groups were initially homogeneous; however, after intervention, the groups diverged significantly. The YCMP group exhibited a reduction of the stress (p<0.05 ), anxiety (p<0.000001 ), and depression (p<0.00001 ) levels, as well as a reduction in the concentration of salivary cortisol (p<0.05 ). Our study suggests that an 8-week yoga and compassion meditation program may offer an effective intervention for reducing perceived stress, anxiety, depression, and salivary cortisol in familial caregivers.

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Low quality of life and psychological wellbeing contrast with moderate perceived burden in carers of people with severe multiple sclerosis

Background Few studies have investigated wellbeing and burden in carers of people with severe multiple sclerosis (PwSMS). Objectives To assess the impact of providing care to PwSMS, and explore variables associated with perceived carer burden. Methods Cross-sectional assessment of health-related quality of life (HRQOL), mood symptoms (Hospital Anxiety and Depression Scale, HADS), and perceived carer burden (22-item Zarit Burden Interview, ZBI) in 78 PwSMS carers. Multivariate linear regression explored carer and PwSMS factors associated with ZBI score. Results Carers (61% women, mean age 60.2years, 53% spouse/partner) had significantly lower HRQOL (all SF-36 scales) than the norm, especially for Role Limitation Emotional/Physical, and Emotional Wellbeing. Sixty-eight percent had pathologic (≥8) Anxiety, and 44% had pathologic Depression scores on HADS. Nonetheless, perceived carer burden was only moderate (mean ZBI score 35.6, SD 14.3). High carer anxiety (p < 0.0001), low household income (p = 0.009), and living with the PwSMS (p = 0.02) were independent predictors of perceived burden.  Conclusions Caring for PwSMS has a detrimental effect on HRQOL and psychological wellbeing. High carer anxiety, low economic status, and living in predict higher burden. It is crucial to recognize PwSMS carers as full partners in the provision of care, and to respond to their own needs.

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A telehealth behavioral coaching intervention for neurocognitive disorder family carers

Objectives: This study examined the differential impact of two telehealth programs for women caring for an older adult with a neurocognitive disorder. Outcomes examined were depressive symptoms, upset following disruptive behaviors, anxious and angry mood states, and caregiving self-efficacy.

Methods: Women cohabitating with a family member diagnosed with a neurocognitive disorder were assigned via random allocation to either of the following: (1) a 14-week behavioral intervention using video instructional materials, workbook and telephone coaching in behavioral management, pleasant events scheduling, and relaxation or (2) a basic education guide and telephone support comparison condition. Telephone assessments were conducted by interviewers blind to treatment condition at pre-intervention, post-intervention, and 6 months following intervention.

Results: For those providing in-home care at post-treatment, depressive symptoms, upset following disruptive behaviors, and negative mood states were statistically lower in the behavioral coaching condition than in the basic education and support condition. Reliable change index analyses for Beck Depression Inventory II scores favored the behavioral coaching condition. Caregiving self-efficacy scores for obtaining respite and for managing patient behavioral disturbances were significantly higher in the coaching condition. Effect sizes were moderate but not maintained at the 6-month follow-up.

Conclusions: This study provides some initial evidence for the efficacy of a telehealth behavioral coaching intervention compared with basic education and telephone support. Carers' abilities to maintain strategy use during progressive disorders such as Alzheimer's disease likely require longer intervention contact than provided in the current study. Dementia carers, including those living in rural areas, can benefit from accessible and empirically supported interventions that can be easily disseminated across distances at modest cost. © 2015 The Authors. International Journal of Geriatric Psychiatry Published by John Wiley & Sons, Ltd.

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Rethinking Intervention Strategies in Stroke Family Caregiving

Stroke is a condition that affects both patients and family members who provide care and support. Because stroke is an unexpected traumatic event that suddenly forces family members into a caregiving role, caregivers often experience an overwhelming sense of burden, depression, and isolation; a decline in physical and mental health; and reduced quality of life. Caregiver health is inextricably linked to a stroke survivor's physical, cognitive, and psychological recovery. Evidence suggests that informational interventions alone are not as effective in meeting the complex needs of stroke caregivers as interventions that combine information with other support services. This article discusses issues related to stroke caregiving and proposes comprehensive strategies designed to meet the poststroke recovery needs of both patients and caregivers. Suggested strategies include a comprehensive assessment specific to caregiver needs, skills, and resources and case management services designed to provide continuity of care across the stroke-recovery trajectory.

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Correlates of intrusion and avoidance as stress response symptoms in family carers of patients suffering from dementia

AIMS: To explore intrusion and avoidance in family carers of dementia patients. METHOD: We studied 196 family carers of 196 home-dwelling dementia patients. Carers were assessed by the Impact of Events Scale (IES), the Geriatric Depression Scale (GDS), the State Trait Anxiety Inventory (STAI) and the Distress scale of the Neuropsychiatric Inventory (NPI-D), and patients with the Mini Mental State Examination (MMSE), the Disability Assessment for Dementia (DAD), and the Neuropsychiatric Inventory (NPI). RESULTS: Twenty carers (10%) scored above 19 on the intrusion and avoidance subscales of the IES, whereas 90 (47%) scored above 8 on both subscales. This moderate to high stress response was independently explained by being a spouse (OR 3.74 (95% CI 1.81-7.74)), high scores on GDS (OR 1.12 (95% CI 1.06-1.18) per unit increase) and high score on NPI-D (OR 1.05 (95% CI 1.01-1.09) per unit increase). CONCLUSIONS: Spouses and other family carers having daily contact with patients with dementia experience moderate to high levels of intrusion and avoidance. These symptoms are associated with symptoms of anxiety, distress and depression and should be taken into account when tailoring interventions for carers. Copyright (c) 2008 John Wiley & Sons, Ltd.

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A support group for caregivers of patients with frontotemporal dementia

Several recent articles have pointed out that caregivers of patients with frontotemporal dementia (FTD) need counselling and support. To date, however, no support groups have been provided other than those available to caregivers of patients with Alzheimer's disease (AD). At our outpatient unit for cognitive disorders we initiated a specific support group for caregivers of patients with FTD. This pilot project had four objectives: 1) to provide information, advice and support to caregivers, 2) to learn more about the specific problems and needs of family carers of patients with FTD and to explore the differences to caregiver burden in AD, 3) to encourage mutual support and development of coping strategies, 4) to evaluate the intervention using a questionnaire completed by the caregiver. Eight spouse caregivers of patients diagnosed with frontotemporal dementia (FTD) participated in special support groups. Seven weekly sessions of 90 minutes' duration were held. To evaluate the program participants were asked to complete a questionnaire about their satisfaction with the support group immediately after the final session. Six months after the intervention they received a questionnaire by mail gathering information on coping efficacy. It became obvious that many problems faced by caregivers of patients with FTD are different from those encountered in AD. During group meetings participants were encouraged to express their own needs and to deal with painful emotions, including aggression, anger, mourning and guilt. Caregivers felt relieved by sharing their problems with others. They were able to learn from each other and to share coping strategies. The group also helped to establish new social relations contacts and even friendships. The participants rated the program as useful and said that benefits were sustained even six months after termination. We conclude from these initial observations that caregiver support groups are a useful component in the management of patients with FTD. Such groups should be tailored to the specific problems and needs of these caregivers. To maintain benefits, self-help groups are recommended even in the absence of professional input.

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Telecare for Diabetes, CHF or COPD: Effect on Quality of Life, Hospital Use and Costs. A Randomised Controlled Trial and Qualitative Evaluation

Objectives: To assess the effect of telecare on health related quality of life, self-care, hospital use, costs and the experiences of patients, informal carers and health care professionals.

Methods: Patients were randomly assigned either to usual care or to additionally entering their data into a commercially-available electronic device that uploaded data once a day to a nurse-led monitoring station. Patients had congestive heart failure (Site A), chronic obstructive pulmonary disease (Site B), or any long-term condition, mostly diabetes (Site C). Site C contributed only intervention patients – they considered a usual care option to be unethical. The study took place in New Zealand between September 2010 and February 2012, and lasted 3 to 6 months for each patient. The primary outcome was health-related quality of life (SF36). Data on experiences were collected by individual and group interviews and by questionnaire.

Results: There were 171 patients (98 intervention, 73 control). Quality of life, self-efficacy and disease-specific measures did not change significantly, while anxiety and depression both decreased significantly with the intervention. Hospital admissions, days in hospital, emergency department visits, outpatient visits and costs did not differ significantly between the groups. Patients at all sites were universally positive. Many felt safer and more cared-for, and said that they and their family had learned more about managing their condition. Staff could all see potential benefits of telecare, and, after some initial technical problems, many staff felt that telecare enabled them to effectively monitor more patients.

Conclusions: Strongly positive patient and staff experiences and attitudes complement and contrast with small or non-significant quantitative changes. Telecare led to patients and families taking a more active role in self-management. It is likely that subgroups of patients benefitted in ways that were not measured or visible within the quantitative data, especially feelings of safety and being cared-for.

Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12610000269033

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Stroke: the increasing complexity of carer needs

In Australia, more than 346,000 individuals who experience a stroke return to living in their homes with varying degrees of disability. They rely on emotional and physical support from informal carers, typically family members. Informal carers have an indispensable role in patient care poststroke, and the ability of carers to manage this role effectively is crucial for stroke survivors to be able to return home. The aim of this study was to examine the impact of the caring role on carers of stroke survivors, particularly the services provided and the levels of depression and well-being experienced. The study used a longitudinal design incorporating survey methods. Stroke survivors were assessed for functional ability, quality of life, and depression using three assessment tools: the Stroke Impact Scale, World Health Organization Quality of Life-BREF scale, and Zung Self-Rating Depression Scale. A total of 26 people were surveyed: 13 stroke survivors and their 13 carers. Carer knowledge of stroke support services was also explored. Information was collected by using survey methods and structured interviews at 3 weeks and at 3 months postdischarge. The main finding was that depression scores for carers and stroke survivors were below Australian norms at both assessment time points. The major concern identified by carers was poor follow-up procedures for initiating rehabilitation in the home. This study highlighted that a lack of appropriate discharge planning, in conjunction with early discharge of stroke survivors, can have an impact on the rehabilitation process and place increased and unrealistic demands on carers.

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Interventions for adult family carers of people who have had a stroke: A systematic review

Objective: A systematic review of the effectiveness of interventions for adult family carers of people with stroke, and an exploratory examination of the relationship between the conceptual basis of these interventions and their effectiveness.

Data sources: Seventeen electronic databases and grey literature sources were searched, including ASSIA, BNI, Cochrane Library, CINAHL, EMBASE, MEDLINE, PsycINFO, Social Science Citation Index and the Science Citation Index, HMIC and the National Research Register. Authors of unpublished material were contacted for data and additional publications. Reference and citation tracking was performed on included publications.

Review methods: Inclusion criteria: randomized controlled trials of interventions aimed primarily at adult family carers of people post stroke; carers were the primary sample; primary outcomes reported were for carers. Two independent reviewers screened titles and abstracts to identify publications and extract data. Quality assessment was performed to weight study findings.

Results: Eight papers were found reporting on six complex, generally heterogeneous, interventions: caregiver training; education and counselling; social problem-solving partnerships, delivered principally by telephone; a psycho-educational telephone support group; a nurse-led support and education programme; and a support programme, delivered either to groups in hospital or individuals during home visits. Half of the interventions were based on stress-coping theories; the remainder did not identify a conceptual basis for the intervention.

Conclusions: Some benefits were reported for all interventions, although trials were generally of low quality, preventing firm conclusions being drawn. The presence of a conceptual basis for interventions does not appear to influence effectiveness.

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Exploring factors and caregiver outcomes associated with feelings of preparedness for caregiving in family caregivers in palliative care: A correlational, cross-sectional study

Background: Family caregivers in palliative care often report feeling insufficiently prepared to handle the caregiver role. Preparedness has been confirmed as a variable that may actually protect family caregiver well-being. Preparedness refers to how ready family caregivers perceive they are for the tasks and demands in the caregiving role.

Aim: The aim of this study was to explore factors associated with preparedness and to further investigate whether preparedness is associated with caregiver outcomes.

Design: This was a correlational study using a cross-sectional design.  Setting/participants: The study took place in three specialist palliative care units and one haematology unit. A total of 125 family caregivers of patients with life-threatening illness participated.

Result: Preparedness was significantly associated with higher levels of hope and reward and with a lower level of anxiety. In contrast, preparedness was not associated with depression or health. Being female and cohabiting with the patient were significantly associated with a higher level of preparedness. The relationship to the patient was significantly associated with preparedness, while social support, place of care, time since diagnosis and age of the patients showed no association.

Conclusion: Feelings of preparedness seem to be important for how family caregivers experience the unique situation when caring for a patient who is severely ill and close to death. Our findings support the inclusion of preparedness in support models for family caregivers in palliative care. Psycho-educational interventions could preferably be designed aiming to increase family caregiver’s preparedness to care, including practical care, communication and emotional support.

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User evaluation of the DEMentia-specific Digital Interactive Social Chart (DEM-DISC). A pilot study among informal carers on its impact, user friendliness and, usefulness

Objective: The need for information about the disease and coping with the consequences, as well as on available care and welfare services, is frequently unmet in people with dementia and their carers. To provide carers of community-dwelling people with dementia with tailored information, the DEMentia-specific dynamic interactive social chart (DEM-DISC) was developed. The impact on the daily life of people with dementia and their carers, the user friendliness and usefulness of a first prototype of DEM-DISC was evaluated.

Method: DEM-DISC was tested among informal carers in a pretest–posttest control group design. Fourteen informal carers could access DEM-DISC at home during a two month period. Fourteen controls did not have access to DEM-DISC. Data were collected by separate interviews with people with dementia and carers at pretest and posttest, by means of digital logging, short telephone interviews, and a bottleneck checklist during the intervention period.

Results: People with dementia and informal carers reported more met and less unmet needs after DEM-DISC use and carers in the experimental group reported higher levels of competence than controls. Although they were not explicitly satisfied with this first prototype of DEM-DISC, carers found DEM-DISC easy to learn and relatively user friendly. Carers acknowledged the system's benefits.

Conclusion: The positive effects might be caused by the systematic and tailored individual way of information provisioning by DEM-DISC. It would be worthwhile to continue to develop DEM-DISC and to conduct randomized trials on the impact on patients and carers as well as the impact on nursing home admission and healthcare expenditure.

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Who cares? A profile of people who care for relatives with a mental disorder

Objective: To profile the Australian adults who are caring for a relative with a mental disorder.

Method: Data came from the 2007 National Survey of Mental Health and Wellbeing 2007 (NSMHWB), a nationally representative household survey of 8841 individuals aged between 16 and 85 years.

Results: Many people act as carers: 15% of the Australian adult population, or nearly 2.4 million individuals. The strongest predictors of being a carer are being female and being in a relatively older age bracket. Carers provide a range of emotional and practical supports to close relatives with a range of mental disorders, most notably high prevalence disorders. Their relatives’ health problems cause them considerable worry, anxiety and depression, and their caring role can be associated with high financial costs.

Conclusions: Carers are significant stakeholders in the mental health system. Providing support for carers is crucial, particularly because their own mental health and well-being may be affected by their care-giving role. The nature of this support should take into account their large numbers, their profile and the role they perform.

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Depressive symptoms in older female carers of adults with intellectual disabilities

Background  This survey study aims to examine the prevalence and factors associated with depressive symptoms among primary older female family carers of adults with intellectual disabilities (ID).

Method  In total, 350 female family carers aged 55 and older took part and completed the interview in their homes. The survey package contained standardised scales to assess carer self-reported depressive symptoms, social support, caregiving burden and disease and health, as well as adult and carer sociodemographic information. Multiple linear regressions were used to identify the factors associated with high depressive symptoms in carers.

Results  Between 64% and 72% of these carers were classified as having high depressive symptoms. The factors associated with carer self-reported depressive symptoms were carer physical health, social support and caregiving burden; overall, the carer self-reported physical health was a stronger factor associated with depressive symptoms than their physical disease status. The level of the adult with ID's behavioural functioning and the carer age, marital status, employment status, education level and the family income level were not significantly associated with carer depressive symptoms.

Conclusions  The factors identified in this study as correlating with self-reported depressive symptoms suggest that researchers and mental health professionals should collaborate to help improve the physical health and social support networks of the most vulnerable older female family carers. This should reduce depressive symptoms directly among this high-risk group.

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The COPE index -- a first stage assessment of negative impact, positive value and quality of support of caregiving in informal carers of older people

Data was collected in five countries from informal carers of older people ( n = 577) via a common protocol. Carers completed: (1) a 17-item version of the Carers of Older People in Europe (COPE) Index, an assessment of carers' perceptions of their role : (2) a questionnaire on demographic and caregiving circumstances : and (3) three instruments included for the criterion validation of the COPE Index (the General Health Questionnaire, the Hospital Anxiety and Depression Scale, and the World Health Organization Quality of Life-BREF). Principal Component Analysis of the COPE Index was followed by internal consistency analysis of emergent components. Scales derived by summing items loading on the components were analyzed for their association with the criterion measures. Two components, negative impact and positive value, emerged consistently across countries. A third component, quality of support was less consistent across countries. Scales derived from the negative impact and positive value components were internally consistent and significantly associated with the criterion validity measures. These two scales and four items drawn from the quality of support component were retained in the final COPE Index. While further testing is required, the COPE Index has current utility in increasing understanding of the role perceptions of carers of older people.

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Family caregiving for people with Alzheimer's disease: results of the NYU spouse caregiver intervention study

This article examines the impact caring for a spouse with Alzheimer's disease has on the caregiver. The author, arguing family caregivers often suffer from fatigue, depression, social isolation, anxiety, and physical illness as a result of the stress involved, maintains outside support for caregivers is crucial for their well-being and can benefit the patient.

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Psychological distress and rumination in palliative care patients and their caregivers

Background: This study is the first to explore how rumination or recurrent dwelling may contribute to psychological distress in palliative care. We hypothesised that rumination is important in palliative care because: (1) rumination is triggered by significant life events; (2) the diagnosis of a life-limiting illness means the reevaluation of a number of personal goals, which may become unattainable, and, thereby, lead to rumination; (3) palliative care patients and caregivers report a number of existential concerns, which in their style and content are characteristic of rumination.

Methods: This study adopted a cross-sectional design, comparing samples of palliative care patients (n = 36), their caregivers (n = 29), and an age-matched control group (n = 30). Participants completed a combination of standardized questionnaires to assess their levels of anxiety, depression, and rumination, and open-ended interviews to identify the concerns they were ruminating on and their idiosyncratic experience of rumination.

Results: As predicted, palliative care patients and their caregivers reported significantly more psychological distress than the control group. Palliative care patients and their caregivers also reported significantly more rumination on existential concerns (e.g., about the future) than the control group. The frequency of existential concerns and measures of rumination reported by participants positively correlated with increased psychological distress.

Conclusion: The results support the importance of addressing rumination on existential concerns in palliative care because of its association with psychological distress. Rumination was identified as a mechanism that may be important in addressing psychological distress in palliative care.

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Caring for a person with dementia: Exploring relationships between perceived burden, depression, coping and well‐being

This study was concerned with identifying the impact of variables such as gender, length of time caring, coping style, depression and perception of caregiving burden on the physical and psychological well‐being of carers of persons with dementia. Forty‐two carers aged between 21 and 88years from Blue Care's Homecare Dementia Service and Cairns Aged Care Health Service participated in the study. A cross‐sectional survey research design was used, with participants providing information on the Satisfaction with Life Scale, the Center for Epidemiologic Studies Depression Scale, the COPE, Short Form (SF)‐12 and the Zarit Caregiver Burden Scale. Perceived burden accounted for 41.7% of the variance in satisfaction with life as a subjective measure of well‐being. There were no significant differences between male and female carers. Satisfaction with life was not found to decrease with length of time caring for the dementia sufferer. There were no significant findings in regard to coping style or physical health of carers. The well-being of carers can be enhanced through strategies which lead to a reduced perception of burden, with respite services providing tangible relief from burden.

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Satisfaction with respite care: a pilot study

Satisfaction with respite care may be bound up with a variety of factors. The interaction of social support with ratings of a carer's satisfaction with respite care has not been explored in published work. The present authors postulated that social support, both during caring and during periods of relief from caring whilst in receipt of respite care, would be associated with greater satisfaction with respite care. They embarked upon a pilot study of carers who were looking after dependants with dementia, a particularly demanding form of care. Previously validated scales were used for determining levels of social support, and for assessing possible confounding factors such as carer depression or strain. One hundred and forty carers were contacted, but only 26 completed the questionnaires. In terms of perceived benefit to the carer, satisfaction was high (rating scale = 1–7, mean = 5.8, mode = 7) and correlated significantly with the numbers of people in the social support network (r = 0.57, P = 0.002), albeit not with any of the four measured types of support which they may have provided. Carer satisfaction was not significantly correlated with carer strain nor depression scores. Regression analysis demonstrated that 17% of the variance in this satisfaction score was accounted for by the numbers in the social support network. Other factors did not significantly explain the observed variation.

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Towards a more liveable life for close relatives of individuals diagnosed with bipolar disorder

The life of close relatives of persons with bipolar disorder (BD) is associated with emotional distress, depression, and a high level of use of mental health care. Illness-related changes of their life situation endanger relationships, social life, finances, and occupational functioning. Understanding of facilitating conditions for close relatives is still a neglected research area. The aim of the present study thus was to explore what makes the life of close relatives of persons with BD more liveable. A lifeworld phenomenological approach was used. The findings reveal that keeping distance, having stability in everyday life, and strengthening equality through transparent communication are conditions that enable close relatives to influence the unpredictable and its consequences and thus make life more liveable. This implies contributions from close relatives, the person with BD, and the caring services. We propose that health-care support should not be divided in support for the patient and/or the close relatives but instead be designed as support for the ‘patient and close relatives’ as a unit. Professional caregivers need to take responsibility for creating intersubjective settings for the person with BD and their close relatives to share their needs and make joint plans for how to influence the illness-related life issues.

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The impact of informal caregivers on depressive symptoms among older adults receiving formal home health care

This study evaluated the association between presence and types of informal caregivers and the presence of depressive symptoms among older adults receiving formal home health care (HHC). A secondary analysis of data was conducted using a computerized patient care database, the Outcome and Assessment Information Set. Logistic regression analyses were used to examine the data of 8448 patients aged 65 years or older who had been admitted to an HHC agency from acute care hospitals between January 1, 2002 and June 30, 2002. The outcome variable was the presence of depressive symptoms. The primary predictor variable was the presence and types of informal caregivers. Covariates included demographic variables, health status, length of time enrolled in formal HHC, patient living arrangements, and the frequency and types of care received from informal caregivers. A lower percentage of older adults receiving care from both informal caregivers and a formal HHC agency (13.3%) had depressive symptoms than older adults receiving only formal HHC (14.9%) at the end of a 60-day episode in formal HHC. Older adults without an informal caregiver were more likely to experience depressive symptoms than those with an informal caregiver after a 60-day episode in HHC (odds ratio = 1.229, 95% confidence interval = 1.027–1.471). There was no significant association between the types of informal caregivers and the presence of depressive symptoms.

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A comparison of working versus nonworking family caregivers of stroke survivors

Because of the trend toward shorter hospital stays, family caregivers of stroke survivors are expected to accept more responsibility for helping survivors during the subacute recovery process. The caregiver role is associated with negative health outcomes, yet existing literature differs on whether work status is a contributor. The purpose of this secondary analysis was to examine how caregiving affects employment and to compare characteristics of working and nonworking caregivers. Baseline data of family caregivers (N = 132) caring for stroke survivors 3-9 months after stroke and enrolled in a national multisite study were used. Caregiver characteristics of physical health, depression, fatigue, family functioning, and family conflict were measured. A total of 36% of caregivers reduced their work hours, resigned, or retired from their jobs to care for their family member. A larger proportion (n= 25, 66%) of minority caregivers were employed (full time or part time) compared to white caregivers (n = 43, 46%). Caregivers employed full time were younger and in better physical health but were at higher risk for depressive symptoms than nonworking caregivers. Family function and conflict were similar between the groups, but working caregivers received more assistance from other family members. Healthcare professionals and employers can use these findings to assist them with recognizing the needs of employed caregivers and offering support measures to facilitate their dual role.

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Risk factor characteristics in carers who physically abuse or neglect their elderly dependants

This study investigates the prevalence of, and differences in, risk factor characteristics in a sample of two select populations of carers, one of which physically abused their elderly dependants and one of which neglected them. Nineteen carers (nine who had physically abused and 10 who had neglected their elderly relatives), who were referred to clinical psychology by either their general practitioner or their psychiatrist, were invited to take part in this study. A detailed history of risk factors was obtained, including history of alcohol dependency, type and history of mental ill health, history of maltreatment earlier in life, who they were caring for, how long they had been a carer and whether they felt isolated as a carer. Subjects were then given five assessments to determine whether there were any differences between the two groups. These were the Conflict Tactic Scale, Strain Scale, Beck Depression Inventory, Beck Anxiety Inventory and Cost of Care Index. An examination of the risk factors suggests that heavy alcohol consumption and past childhood abuse by fathers were likely to lead to physical abuse. Significantly higher conflict and depression scores were also present in the physical abuse group, while the neglect group had significantly higher anxiety scores. It is suggested that these findings should be incorporated into an assessment of future risk of abuse or neglect by the carer.

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Impact of informal care levels on discontinuation of living at home in community-dwelling dependent elderly using various community-based services

The aim of the study was to examine the effect of informal care levels on overall discontinuation of living at home, all-cause death, hospital admission, and long-term care placement for community-dwelling older people using various community-based services during a 3-year period. Prospective cohort study of 1582 community-dwelling disabled elderly and paired informal caregivers was conducted. Baseline data included the recipients and caregivers' demographic characteristics, comorbidities, informal care levels (sufficient, moderate, and insufficient care), which were evaluated by trained visiting nurses, and the level of formal community-based service use. Among 1582 participants, 97 died at home, 692 were admitted to hospitals, 318 died during their hospital stay, and 117 were institutionalized in long-term care facilities during 3 years of follow-up. A multivariate Cox hazard model demonstrated that when compared with a sufficient informal care level, an insufficient informal care level was associated with overall discontinuation of living at home, all-cause mortality, hospitalization, and institutionalization during 3 years of follow-up (hazard ratio: 1.65, 95% confidence interval: 1.15-2.36; 1.98, 1.17-3.34; 1.56, 1.04-2.35; 2.93, 1.25-6.86, respectively). The results suggested that informal caregiving is an important factor in the prevention of overall discontinuation of living at home in a population of disabled older people.

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Worried sick: the emotional impact of cancer

Macmillan Cancer Support’s Worried Sick report presents a summary of the findings of a major quantitative survey conducted by Opinion Leader Research (OLR). The survey explores the impact of a cancer diagnosis on the lives of both people with cancer (who have received the diagnosis) and people affected by cancer (family members and friends who often help them cope with their cancer experience). Specifically our research objectives were to examine the impact of a cancer diagnosis on: • Living with cancer every day, including people’s experience of the cancer information and support system and the physical impact of cancer • People’s emotional well-being and relationships • People affected by cancer (informal carers, who may be a relative or friend) The research also aimed to establish any differences between the views and experiences of people living with or affected by cancer, and those who had never been affected by the disease.

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Support/services and family carers of persons with stroke impairment: perceived importance and services received

Objective: To examine what family carers of persons with stroke impairment perceive as important support and service quality characteristics in relation to their experienced strain/burden, and to explore to what extent family carers receive support/services perceived as important. Design: Data from a cross-sectional study. Subjects: A sample of 183 family carers in Sweden, 64 experiencing lower and 119 experiencing higher strain/burden, a subsample of the EUROFAMCARE project. Methods: Carers were interviewed using a structured questionnaire. Results: There are few differences between carers experiencing high and low strain/burden in what they perceive and receive in terms of important support and service quality characteristics. Information, relief, and counselling support/services are highly valued. It is also important that services improve quality of life, and have good process qualities regarding interaction with staff and individualization. Most services regarded as important are received by less than 60% of carers. Conclusion: The variation is rather high on an individual level in terms of what carers regard as important, indicating that factors other than negative impact may influence their perceptions of support/service and service quality. Thus, it is important to know carers’ perceptions in order to individualize support/service, and thus make it more available and efficient.

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Survival of persons with Alzheimer's disease: caregiver coping matters

Purpose: Although persons with Alzheimer's disease (AD) require increasingly more assistance with activities of daily living as their disease progresses, the caregiving environment has received little attention as a source of predictors of their survival time. We report here on a study to determine whether variation in survival time of persons with AD can be better explained by including caregiver variables such as coping style and depressive symptoms as predictors. Design and Methods: A sample of 193 persons with AD residing in the community and their family caregivers was used to estimate the parameters of a Cox regression model of survival time that included both caregiver characteristics and care-recipient impairments as covariates. Results: Caregiver wishfulness–intrapsychic coping was related to shorter care-recipient survival time, but instrumental and acceptance coping and caregiver depressive symptoms were not associated with survival time. Care-recipient impairments (dependency in activities of daily living, low score on the Mini-Mental State Examination, and problematic behaviors) were associated with shorter survival time. Implications:Because this study is the first to report the link between caregiver coping and care-recipient survival, further study to understand the dynamics is required. We discuss several possible mechanisms, including the possibility that caregivers engaging in wishfulness–intrapsychic coping are less psychologically available to the person with dementia. These caregivers may therefore provide less person-centered care that is responsive to the true capacities of the person with dementia, and thus they may inadvertently contribute to excess disability and consequent accelerated decline. Because wishfulness–intrapsychic coping was uncorrelated with instrumental or acceptance coping, our findings suggest that interventions to enhance coping skills among caregivers, which have focused primarily on increasing problem solving and acceptance coping, also may have to include specific attempts to reduce wishfulness–intrapsychic approaches to benefit not only the caregiver but the care recipient as well.

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Evercare study: More Hours Spent Caregiving Equated with Greater Decline

Previous studies have shown that caregivers spend on average 4.5 years caregiving, with the needs escalating over time, thus impacting caregiver health significantly over that period (Caregiving in theU.S., AARP and National Alliance for Caregiving). The Evercare study revealed that the more time caregivers spend caring for a loved one, the greater their health decline. This is even more true for those caregivers providing a higher level intensity of caregiving such as giving medications or injections, bathing, feeding, dressing or other activities of daily living. Caregivers who reported their health got a lot worse as result of caregiving (15%) spend an average of 58 hours a week caregiving and those with a moderate deterioration in health (44 percent) spend an average of 42 hours a week caregiving.

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A stress-busting program for family caregivers

Aging baby boomers, longer life spans, and rising levels of Alzheimer's disease and related dementias (ADRD) will result in a caregiver crisis in the near future. The ways in which caregivers deal with stresses related to caregiving will be critical to both their own well-being and their ability to care for others. The purpose of this article is to describe the Stress-Busting Program (SBP) for family caregivers and its effectiveness. The essential components of the SBP are education, stress management, problem solving, and support delivered in a group setting for 9 weeks. Results of the SBP indicate that throughout the program, caregivers experienced significant improvements in general health, vitality, social function, and mental health scores and decreases in anxiety, anger/hostility, depression, perceived stress, and caregiver burden. The SBP is a cost-effective health-promotion strategy for caregivers who have substantial ongoing stress.

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An exploratory study of anxiety in carers of stroke survivors

Aims and objectives. To investigate anxiety in informal carers of stroke survivors in the first three months after discharge. Background. Informal carers, also called caregivers, play a vital role in supporting stroke survivors. However, caring for stroke survivors can have adverse consequences amongst carers such as burden, stress and reduced quality of life. Emotional distress is also commonly reported but anxiety has received less attention than depression. Design. Prospective, longitudinal, descriptive study. Method. Forty-five carers completed the Hospital Anxiety and Depression Scale on two occasions – within one month and at three months after discharge from stroke and rehabilitation units. Results. Carers were more likely to have scores indicating anxiety than depression. In the first month, half the carers (51·1%) scored in the cut-off for anxiety and a third were in the cut-off for depression (31·1%). At three months, the picture was very similar with nearly identical proportions in the anxious and depressed categories (48·9% and 28·9%, respectively). Changes in numbers of cases of anxiety and depression and in mean anxiety scores were non-significant but there was a significant decrease in depression scores (p = 0·048). Fourteen carers (31·1%) at one month and eleven (24·4%) at three months fell into both anxious and depressed categories. Conclusions.  Anxiety is a relatively neglected emotional outcome in stroke carers. Our study suggests anxiety is an important issue very early in caring whilst other research suggests it remains prevalent for many months. Given the significant role carers play in rehabilitation of stroke survivors, greater recognition of their emotional state is required. Further, longitudinal research with larger sample sizes from a range of geographical areas and improved understanding of factors associated with anxiety is needed. Relevance to clinical practice.  Nurses working in the community are ideally placed to identify and support carers suffering from anxiety.

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Two sides of the same coin: caring for a person with bipolar disorder

The aim of this paper was to gain an in-depth understanding of the way the lives of individuals supporting someone diagnosed with bipolar disorder. Bipolar disorder is a severe, recurrent and chronic mental disorder that has a significant impact on the lives of those who experience it and the people supporting them. It is often the subsyndromal symptoms that cause major impairment in functioning and can have financial, social, interpersonal and health impacts for carers. A qualitative thematic analysis was chosen to enable an in-depth exploration of participants' experiences. Twelve participants were interviewed using a semi-structured interview and the data were analysed to identify the themes that represented the participants' experiences. The predominant theme that emerged, two sides of the same coin, described the positive and negative aspects of being an informal carer for a person with bipolar disorder. This theme is constituted by two sub-themes: (1) ‘I am a much more compassionate person’; and (2) ‘It's tough and it's a sacrifice’. Mental health nurses could support informal caregivers more by providing care that demonstrates an understanding of the complexities associated with bipolar disorder and utilizes a collaborative approach to care that actively involves informal caregivers.

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Multicenter randomized controlled trial of an outreach nursing support program for recently discharged stroke patients

Background and Purpose— Many stroke patients and informal carers experience a decreased quality of life after discharge home and are dissatisfied with the care received. We assessed the effectiveness of an outreach nursing care program.

Methods— In a multicenter trial, 536 stroke patients were randomized at discharge to standard care (n=273) or standard care plus outreach care (n=263). The outreach care consisted of 3 telephone calls and 1 home visit within 5 months after discharge by 1 of 13 stroke nurses. Patients were masked for the trial objectives. Six months after discharge, they assessed the 2 primary outcomes: quality of life (Short Form 36 [SF-36]) and dissatisfaction with care. Secondary measures of outcome were disability, handicap, depression, anxiety, and use of health care services and secondary prevention drugs. Informal carers assessed strain, and social support. Analysis was by intention to treat.

Results— Twelve patients died before follow-up, 38 declined outcome assessment, and 486 completed the primary outcome assessments. Outreach care patients had better scores on the SF-36 domain “Role Emotional” than controls (mean difference 7.9 [95% confidence limit, 0.1 to 15.7]). No statistically significant differences were found on the other primary outcome measures. For secondary outcomes, no statistically significant differences were found, except that intervention patients used fewer rehabilitation services (relative risk, 0.66 [0.44 to 1.00]) and had lower anxiety scores (median difference 1 [0.19 to 2.79]).

Conclusions— This outreach nursing stroke care was not effective in improving quality of life and dissatisfaction with care of recently discharged patients.

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Unsung heroes who put their lives at risk? : informal caring, health and neighbourhood attachment

Background Previous studies have highlighted the effects of informal caring on mental health, but evidence for its wider impact remains scant. We explored associations between informal care and a range of health (and health-related) measures. We also considered previously neglected differences between informal care ‘at home’ and care elsewhere, along with neighbourhood attachment as a possible modifier of the associations we found.

Methods The study involved a large population survey in two Primary Care Trusts. Data were collected by postal survey of 15465 adults; subjects were selected from the local General Practice register. 12.7 per cent of respondents identified themselves as carers. Health measures included psychiatric morbidity, bodily pain, self-assessed health, health-related behaviours, obesity, prescribed drugs and high levels of GP consultation.

Results Of nine measures considered, care at home was associated with psychiatric morbidity (OR 1.46, 95 per cent CI 1.25–1.70), bodily pain (OR 1.19, 95 per cent CI 1.02–1.39), and obesity (OR 1.59, 95 per cent CI 1.34–1.89). Care ‘away’ was associated with smoking (OR 1.26, 95 per cent CI 1.03–1.54), and inversely with both sedentary living (OR 0.70, 95 per cent CI 0.58–0.85) and poor self-assessed health (OR 0.78, 95 per cent CI 0.62–0.99). Health tended to be poorer when carers lacked a sense of neighbourhood attachment.

Conclusions Informal carers are likely to face serious health challenges besides anxiety and depression. Caring is associated with several aspects of poor health, which are themselves predictors of premature mortality. Proactive and wide-ranging support is required, the more so in neighbourhoods where carers feel alienated. Research and policy should distinguish carers ‘at home’ from carers ‘away’.

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An evaluation of the impact of voluntary sector family support workers on the quality of life of carers of schizophrenia sufferers

An evaluation was conducted of voluntary sector family support workers (FSWs) working with families of schizophrenia sufferers. FSWs completed a diary schedule and interviews were conducted with 15 co-professionals from the FSWs' multi-disciplinary teams and 62 carers from FSWs' caseloads. Carers' problems were assessed using the burden component of the Social and Behavioural Assessment Schedule and the Lancashire Quality of Life Profile. Carers were asked about the type of support received and their satisfaction. The findings revealed the considerable pressures of caring and highlighted the value perceived by both carers and coprofessionals of the FSW as a counselling, listening, information and advocacy resource. The diary study revealed that FSWs spend 40% of their time providing emotional and/or practical support. The impact of this was suggested by the superior ratings of quality of life and lower burden scores among carers with whom the FSW had longer-term involvement.

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Gender differences in the construction and experience of cancer care: The consequences of the gendered positioning of carers

The experience and construction of caring in 50 informal cancer carers, 35 women and 15 men, was examined using a critical realist approach and a mixed method design. Women reported higher rates of depression, anxiety, unmet needs and burden of care than men. No gender differences were found in time spent care-giving, suggesting that gendered roles are implicated in distress and coping. Semi-structured interviews with 13 carers were used to identify gender differences in caring, analysed using positioning theory. Women described being positioned as all encompassing expert carers, expected to be competent at decision-making, a range of physical caring tasks, and provision of emotional support for the person with cancer. The consequences of this positioning were over-responsibility and self-sacrifice, physical costs and overwhelming emotions, which were self-silenced. In contrast, men carers positioned caring as a competency task which they had mastered, and which provided them with satisfaction, with the emotions of the person with cancer, or their own emotions, being negative aspects of caring. It is concluded that cancer caring is tied to gendered constructions and expectations, with considerable implications for psychological well-being and coping, and for carer support services, which need to take gender issues on board.

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Informal caregiving transitions, subjective well-being and depressed mood: Findings from the English Longitudinal Study of Ageing

Objectives: To prospectively investigate the impact of transitions in informal caregiving on emotional well-being over two years in a large population study of older people.

Methods: Information on provision of unpaid care in 2004/2005 and 2006/2007 was available for 6571 participants in the English Longitudinal Study of Ageing. Three well-being domains were also assessed on each occasion: life satisfaction (measured with the Satisfaction with Life Scale); quality of life (assessed with the CASP-19 scale); and depression symptoms (measured using the Centers for Epidemiologic Studies Depression Scale). Multivariable analyses of the impact on well-being of two-year caregiving transitions (caregiving entry and caregiving exit, or continued caring) were conducted separately for spousal/child carers and carers of other family/non-relatives.

Results: Compared to non-caregiving, entry into spousal/child caregiving was associated with decline in quality of life (B = −1.60, p < .01) whereas entry into caregiving involving other kin relations increased life satisfaction (B = 1.02, p < .01) and lowered depression symptoms (B = −0.26, p < .05). Contrary to expectations, caregiving exit was related to increased depression in both spousal/child (B = 0.44, p < .01) and non-spousal/child (B = 0.25, p < .05) carers. Continued spousal/child caregiving was also related to decline in quality of life (B = −1.24, p < .05). Other associations were suggestive but non-significant.

Conclusion: The emotional impact of different caregiving transitions in later life differs across kin relationships; notably, spousal and child carers' well-being was consistently compromised at every stage of their caregiving career over the two-year study period.

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Stroke Survivor Depressive Symptoms Are Associated With Family Caregiver Depression During the First 2 Years Poststroke

Background and Purpose—Behavioral and psychological symptoms associated with stroke are gaining increasing attention in a field in which recovery of physical function has dominated. A small body of research has begun to suggest that stroke survivors' (SSs') behavioral and psychological symptoms contribute to family caregivers' experiences of emotional distress. The objective of this research was to determine the unique contribution of SS behavioral and psychological symptoms on caregiver emotional distress during the first 2 years poststroke.

Method—A longitudinal cohort study was conducted of individuals who have survived their first stroke and their caregivers. Participants completed standardized measures by telephone interviews at 1, 3, 6, and 12 months poststroke. A subsample completed additional assessments 18 and 24 months poststroke. These longitudinal data were analyzed using mixed effects modeling.

Results—Three hundred ninety-nine SS/caregiver dyads participated. Overall, caregivers reported more emotional distress when caring for SSs exhibiting more depressive symptoms and more cognitive impairment and when caregivers were younger, female, in poorer physical health, experienced more lifestyle interference, and reported less mastery. SSs' physical disability, stroke severity, and comorbidity were not significant. The set of significant predictors remained consistent when examined in the subsample followed for 2 years (except SS cognitive impairment).

Conclusions—Interventions aimed at improving caregiver well-being should focus on enhancing clinical management of SSs' depression and better preparing caregivers to manage behavioral and psychological symptoms. In addition, respite programs that encourage caregivers to maintain participation in valued activities may be beneficial.

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Evaluating the efficacy of psycho-social interventions for informal carers of cancer patients: a systematic review of the research literature

Recognition that informal cancer carers experience unmet needs and psychological distress has led to the development of a range of psycho-social interventions. The efficacy of such interventions is examined through a systematic review of the research literature, following National Health and Medical Research Council and Cochrane Collaboration guidelines. Of 13 level II randomised controlled trials (RCTs), only eight showed significant differences across groups, with moderate effect size. This included improvement in caregiver experience or appraisal of caregiving following psycho-education (two studies); improved sexual satisfaction, dyadic coping, relationship quality and communication, or reduced psychological distress, following couple counselling (4); reduced distress following family grief therapy (1); and reduction in distress in bereavement following home palliative care (1). Level III and IV studies were also reviewed, reporting positive effects of psycho-education (5), problem solving (3), an arts intervention (1) and a support group (1). However, methodological concerns limit the generalisability of findings of level III and IV studies. It is concluded that interventions should target those most in need of support; recognise specific needs of carers across cancer type and stage, gender and relationship context; be theory based; and evaluations should utilise RCT designs with outcome measures appropriate to the specific aims of the intervention, rather than global measures of distress.

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Behavioral and mental health problems in low-income children with special health care needs

This study examined caregiver perceptions of mental health problems and counseling needs in low-income children with special health care needs (CSHCN). Interviewers collected data from 257 caregivers of CSHCN (61% males; 60% African American; Mean age = 8.4 years) attending six Midwestern inner-city health clinics. Measures included the Child Behavior Checklist (CBCL) and an investigator-designed questionnaire. CBCL T-scores indicated that 38% of CSHCN had a behavioral or mental health problem, but only 26% of caregivers perceived the need for treatment or counseling. CSHCN should be assessed and referred appropriately for behavioral and mental health problems during routine health care visits.

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Employment status, social ties, and caregivers’ mental health

The purpose of this study of mid-life and older women was to assess the relation between informal care provision and depressive symptoms, taking into account concurrent demands on women's time (including multiple caregiving roles and employment outside the home) as well as participants’ access to potentially supportive social ties.

This cross-sectional study included women ages 46–71, free from major disease, who provided complete health and social information in the 1992 Nurses’ Health Study follow-up survey (n=61,383). In logistic regression models predicting depressive symptoms, we examined the interaction between employment outside the home and informal care provision for a disabled or ill spouse or parent. We also investigated level of social ties, measured with the Berkman–Syme Social Network Index, as a potential modifier of the association between informal care provision and depressive symptoms.

In all analyses, higher weekly time commitment to informal care for a spouse or parent was associated with increased risk of depressive symptoms. This relationship persisted whether women were not employed outside the home, were employed full-time, or were employed part-time. Higher weekly time commitment to informal care provision was associated with increased risk of depressive symptoms whether women were socially integrated or socially isolated. However, both informal care provision and social ties were potent independent correlates of depressive symptoms. Therefore, women who reported high spousal care time commitment and few social ties experienced a dramatic elevation in depressive symptoms, compared to women with no spousal care responsibilities and many social ties (OR for depressive symptoms=11.8; 95% CI 4.8, 28.9). We observed the same pattern among socially isolated women who cared for their parent(s) many hours per week, but the association was not as strong (OR for depressive symptoms=6.5; 95% CI 3.4, 12.7). In this cross-sectional study, employment status did not seem to confer additional mental health risk or benefit to informal caregivers, while access to extensive social ties was associated with more favorable caregiver health outcomes.

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Care counselling - The client's expectations

Aim: The amendment of legal care consultations in the context of the long-term care insurance law (2008) has broadened recent consulting practice within the action range of the nursing care insurance in Germany. The informational needs and consulting requests of the clients were not investigated so far. Our aim was to examine information needs and consulting requests of those in need of care and their informal carers. Methods: The consulting requests of visitors of 2 open citizen events were documented by the use of a semi-structured questionnaire. Content analysis following Mayring (2008) was used for data analysis. Results: 158 consulting discussions were documented, from which 177 consulting requests were formed. The consulting requests can be divided in 4 main categories: (1) inquiry about the care system [56/32%], (2) inquiry about individual access to care offers [43/24%], (3) inquiry about regional care suppliers [43/24%], (4) situation- and disease-specific inquiries [35/20%]. Conclusion: Inquiries about local suppliers of care and situation- and disease-specific inquiries outweigh the number of inquiries about the care system in general. Furthermore, our results show that the informational needs of those in need of care do not only refer to the scope of care insurance law, but to additional social security codes.

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Children's perceptions and experiences of care giving: a focus group study

The stress of care giving for spouses and adult children has been extensively documented in the empirical literature. More recently attention has been paid to children's involvement in family care giving. Qualitative studies in the social welfare field have highlighted the social restrictions caring places upon children. There remains a need, however, to understand what children are thinking and feeling in an effort to cope with their care-giving demands. This study used a focus group methodology and individual interviews to explore the experiences of 17 young carers aged between 10 and 16. Thematic analysis was employed to identify themes relating to the nature of stressors, their appraisal of them, and the coping strategies they use to manage the task of caring.

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A time-sovereignty approach to understanding carers of cancer patients' experiences and support preferences

Much of the literature on informal carers of cancer patients is quantitative and psycho-oncology based. This literature has established that cancer carers experience higher rates of stress, depression and anxiety than their non-caregiving counterparts, with younger female carers reporting higher rates of burden and unmet needs. The reasons behind this variation and variations in support preferences are poorly understood: some carers prefer support groups and others prefer practical support. This study takes a sociological approach to exploring carers' varied experiences. Longitudinal interviews were conducted with 32 carers of a spouse with cancers of varying stages and diagnoses in the Australian Capital Territory. Analysis, informed by the discretionary time literature, shows time-sovereignty illuminates much of the variation in carers' emotional experiences and support preferences. Carers with few competing commitments and less onerous caregiving responsibilities had time to experience and unpack the range of emotions associated with cancer, and reconnect with their spouse. These carers preferred emotion-focused support. In contrast, carers with multiple commitments had little time to themselves and viewed emotions as an indulgence. These carers preferred practical support. A time-sovereignty framework offers health and support professionals a means of understanding carers' varying needs and tailoring support services.

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The association between substance use and the needs of patients with psychiatric disorder, levels of anxiety, and caregiving burden

The influence of substance use on patient's needs and caregiving consequences has received insufficient research attention. We sought to determine whether patients with comorbid substance use have higher levels of need, anxiety, depression, and caregiving consequences than those of patients who do not use substances. A total of 520 patients participated, and those who used substances (n = 216) reported higher levels of unmet needs, anxiety, and caregiving consequences than did patients who did not use substances. Carers of patients who used substances also reported higher anxiety and more caregiving consequences. Very few patients were actively involved in treatment programs to reduce their substance use.

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Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: a meta- analysis

In the present meta-analysis, we integrated findings from 228 studies on the association of six caregiving-related stressors and caregiving uplifts with burden and depressed mood. Care recipients' behavior problems showed stronger associations with caregiver outcomes than other stressors did. The size of the relationships varied by sample characteristics: Amount of care provided and care receivers' physical impairments were less strongly related to burden and depression for dementia caregivers than for caregivers of nondemented older adults. For spouse caregivers, physical impairments and care recipients' behavior problems had a stronger relationship to burden than for adult children. Furthermore, we found evidence that the association of caregiver burden with the number of caregiving tasks, perceived uplifts of caregiving, and the level of physical impairment of the care receiver were stronger in probability samples than in convenience samples.

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Caring for a relative with dementia: family caregiver burden

This paper is a report of part of a study to investigate the burden experienced by families giving care to a relative with dementia, the consequences of care for the mental health of the primary caregiver and the strategies families use to cope with the care giving stressors. The cost of caring for people with dementia is enormous, both monetary and psychological. Partners, relatives and friends who take care of patients experience emotional, physical and financial stress, and care giving demands are central to decisions on patient institutionalisation. A volunteer sample of 172 caregiver/care recipient dyads participated in the study in Cyprus in 2004-2005. All patients were suffering from probable Alzheimer's type dementia and were recruited from neurology clinics. Data were collected using the Memory and Behaviour Problem Checklist, Burden Interview, Centre for Epidemiological Studies-Depression scale and Ways of Coping Questionnaire. The results showed that 68·02% of caregivers were highly burdened and 65% exhibited depressive symptoms. Burden was related to patient psychopathology and caregiver sex, income and level of education. There was no statistically significant difference in level of burden or depression when patients lived in the community or in institutions. High scores in the burden scale were associated with use of emotional-focused coping strategies, while less burdened relatives used more problem-solving approaches to care-giving demands. Conclusion. Caregivers, especially women, need individualized, specific training in how to understand and manage the behaviour of relatives with dementia and how to cope with their own feelings.

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Trajectories of quality of life in early-stage dementia: individual variations and predictors of change

Background: Little evidence is available about how quality of life (QoL) changes as dementia progresses.

Objectives: We explored QoL trajectories over a 20-month period and examined what predicted change in QoL.

Method: Fifty-one individuals with a diagnosis of Alzheimer's, vascular or mixed dementia (people with dementia (PwD)) participating in the Memory Impairment and Dementia Awareness Study rated their QoL using the QoL-Alzheimer's Disease Scale at baseline and at 20-month follow-up. PwD also rated their mood and quality of relationship with the carer. In each case, the carer rated his or her level of stress and perceived quality of relationship with the PwD.

Results: There was no change in mean QoL score. Nearly one-third of PwD rated QoL more positively at 20-month follow-up and nearly one-third rated QoL more negatively. These changes could be regarded as reliable in one-quarter of the sample. Participants taking acetylcholinesterase-inhibiting medication at baseline were more likely to show a decline in QoL score. There were no other significant differences between those whose scores increased, decreased or stayed the same on any demographic or disease-related variables, or in mood or perceived quality of relationship with the carer. Whereas baseline QoL score was the strongest predictor of QoL at 20 months, the quality of relationship with the carer as perceived by the PwD was also independently a significant predictor.

Conclusions: There is a degree of individual variation in QoL trajectories. Use of acetylcholinesterase-inhibiting medication appears linked to decline in QoL score, whereas positive relationships with carers play an important role in maintaining QoL in early-stage dementia. Copyright © 2013 John Wiley & Sons, Ltd.

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PL01 The impact of caring for spouses on mental health and health behaviours in over 50s in Ireland, the Irish Longitudinal Study on Ageing

Background An association between informal caring and increased stress, depression and ill-health has been found previously. Limited data are available on the effect of spousal caring on mental health. This study aimed to determine if informal caring for a spouse was associated with depression or health behaviours in adults aged over 50 in Ireland and whether these effects were influenced by the amount of formal care also received.

Methods We analysed two waves (2009–2011, and 2012–2013) of the Irish Longitudinal Study of Ageing (TILDA), a stratified probability sample prospective cohort of men and women aged over 50, resident in Ireland. A total of 5220 respondents, or 2610 couples, who were married/partnered with both spouses in two waves were included. We used multivariate logistic regression models to determine whether caring for a spouse was associated with depression, adjusting for age, socio-economic variables, disability, and cognition of spouse, social support and health-related behaviours in addition to formal care support. Change scores in depression between waves in spousal carers were calculated with the 20-item Centre for Epidemiological Studies Depression (CES-D) scale, and alcohol problems measured using the CAGE alcohol questionnaire. All analyses were conducted in STATA 12.

Results Overall 2.4% (123 of 5051) of married individuals aged over 50 in Ireland began caring for their spouse since surveyed in 2009–2011, and 0.5% (25) cared for their spouse in both surveys. Beginning to care for a spouse was associated with increased depression in the multivariable model (OR 1.05, 95% CI 1.01–1.09) for women, but not in men. Becoming a spousal carer was also associated with negative health behaviours; carers were more likely to be current smokers (OR 2.06, 95% CI 1.17–3.64) and men to have a problem with alcohol (OR 7.78, 95% CI 3.52–17.2), compared to non-carers. The negative effect of caring on mental health was attenuated by receiving respite care, home help and personal care attendants.

Conclusion Becoming a spousal carer was associated with increased depression in this longitudinal study but this effect was reduced by access to formal care. The impact of caring on depression and behavioural health was differentially moderated by gender, with women having increased depression, and men more likely to have problematic drinking. Further research is needed to clarify mechanisms of resilience and support to increase social inclusion of informal carers and enhance home support through formal care mechanisms to reduce the detrimental health-related risks of care-giving.

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Social factors and depression in carers of people with dementia

Research has highlighted the influence of psychosocial factors on the wellbeing of carers of people with dementia. This study aimed to investigate the interrelationships between life events, depression and social support in carers of people with dementia. Participants were 72 carers of people with dementia. They were interviewed using the Bedford College Life Events and Difficulties Schedule and the Geriatric Depression Scale. The results showed that 31 (43%) of carers were depressed. Factors associated with depression in carers were a lack of confiding relationship, depression in the person with dementia, and living with the person with dementia. Carers of people with dementia appear more vulnerable to depression in the context of the caring experience rather than threatening life events.

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Posttraumatic stress disorder, depression, executive functioning, and autobiographical remembering in individuals with HIV and in carers of those with HIV in Iran

Two studies examined autobiographical remembering in those with HIV (Study 1) and in carers of those with HIV (Study 2) in Iran. Study 1 investigated posttraumatic stress disorder (PTSD) and depression symptoms, executive control, and autobiographical remembering in those with HIV. Individuals with HIV (n = 34) and healthy controls (n = 34) completed the Impact of Event Scale-Revised, Beck's Depression Inventory-II, Beck's Anxiety Inventory, Autobiographical Memory Interview, Autobiographical Memory Test, Wisconsin Card Sorting Test, and Tower of London. The results indicated higher PTSD and depression symptoms among the HIV group. The findings also showed that those with HIV had lower levels of executive functioning, deficits in autobiographical remembering (semantic and episodic) and retrieved less specific autobiographical memories than the control group. Study 2 examined depression, executive functioning, and autobiographical memory performance among carers of those with HIV (n = 26) and healthy controls (n = 26). The same measures were completed as in Study 1. The results indicated higher depression among the carers group but the groups did not differ in terms of executive functioning or semantic recollection. The carers had lower episodic recall scores and less specific memories than the control group. The findings are discussed in terms of the processes involved in nonspecific retrieval of autobiographical material in relation to HIV.

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Alzheimer's disease: the psychological and physical effects of the caregiver's role, part 2

The purpose of this study was to investigate the physical and psychological effects on informal caregivers of looking after a person with Alzheimer’s disease. A descriptive survey was conducted in counties Galway, Mayo and Roscommon in Ireland using a simple random sample of caregivers registered with the Alzheimer Society of Ireland, Galway, or the Western Alzheimer’s Foundation. The findings from the study show that a significant proportion of caregivers reported poor self-rated health and depression. Restless sleep and a decreased tolerance for pain were also common.

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Effectiveness of interventions that assist caregivers to support people with dementia living in the community: a systematic review

The objective of this review was to assess the effectiveness of interventions that assist caregivers to provide support for people living with dementia in the community. Adult caregivers who provide support for people with dementia living in the community (non‐institutional care). Interventions designed to support caregivers in their role such as skills training, education to assist in caring for a person living with dementia and support groups/programs. Interventions of formal approaches to care designed to support caregivers in their role, care planning, case management and specially designated members of the healthcare team – for example dementia nurse specialist or volunteers trained in caring for someone with dementia. This review considered any meta‐analyses, systematic reviews, randomised control trials, quasi‐experimental studies, cohort studies, case control studies and observational studies without control groups that addressed the effectiveness of interventions that assist caregivers to provide support for people living with dementia in the community.

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The clinical and cost effectiveness of a Breathlessness Intervention Service for patients with advanced non-malignant disease and their informal carers: mixed findings of a mixed method randomised controlled trial

Background: Breathlessness is the most common and intrusive symptom of advanced non-malignant respiratory and cardiac conditions. The Breathlessness Intervention Service (BIS) is a multi-disciplinary complex intervention, theoretically underpinned by a palliative care approach, utilising evidence-based non-pharmacological and pharmacological interventions to support patients with advanced disease in managing their breathlessness. Having published the effectiveness and cost effectiveness of BIS for patients with advanced cancer and their carers, we sought to establish its effectiveness, and cost effectiveness, in advanced non-malignant conditions.

Methods: This was a single-centre Phase III fast-track single-blind mixed method RCT of BIS versus standard care for breathless patients with non-malignant conditions and their carers. Randomisation was to one of two groups (randomly permuted blocks). Eighty-seven patients referred to BIS were randomised (intervention arm n = 44; control arm n = 43 received BIS after four-week wait); 79 (91 %) completed to key outcome measurement. The primary outcome measure was 0–10 numeric rating scale for patient distress due to breathlessness at four weeks. Secondary outcome measures were Chronic Respiratory Questionnaire, Hospital Anxiety and Depression Scale, Client Service Receipt Inventory, EQ-5D and topic-guided interviews.

Results: Qualitative analyses showed the positive impact of BIS on patients with non-malignant conditions and their carers; quantitative analyses showed a non-significant greater reduction in the primary outcome (‘distress due to breathlessness’), when compared to standard care, of –0.24 (95 % CI: –1.30, 0.82). BIS resulted in extra mean costs of £799, reducing to £100 when outliers were excluded; neither difference was statistically significant. The quantitative findings contrasted with those previously reported for patients with cancer and their carers, which showed BIS to be both clinically and cost effective. For patients with non-malignant conditions there was a notable trend of improvement over both trial arms to the key measurement point; participants may have experienced a therapeutic effect from the research interviews, diluting the intervention’s impact.

Conclusions: BIS had a statistically non-significant effect for patients with non-malignant conditions, and slightly increased service costs, but had a qualitatively positive impact consistent with findings for advanced cancer. Trials of palliative care interventions should consider multiple, mixed method, primary outcomes and ensure that protocols limit potential contaminating therapeutic effects in study designs.

Trial registration: Current Controlled Trials ISRCTN04119516 (December 2008); ClinicalTrials.gov NCT00678405 (May 2008)

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Predictors of high level of burden and distress in caregivers of demented patients: results of an Italian multicenter study

Considerable suffering is experienced by carers of patients with dementia. Most existing studies do not consider the coexistence of subjective and objective aspects that cause, interacting to each other, this suffering. The authors: (1) define the high-risk group of caregivers on the bases of the scores obtained on the four scales evaluating burden, distress, depression and anxiety (BDDA) taken into account simultaneously and (2) evaluate risk factors related to the high level of BDDA. 419 elderly outpatients with dementia and their caregivers were enrolled. Patients were evaluated for their cognitive, neuropsychological and functional impairment and for comorbidity. Caregivers were evaluated with four scales for the assessment of burden, distress related to neuropsychological disturbances, depression and anxiety. Cluster analysis was used to identify the group with the High level of BDDA (HBDDA). By multiple logistic analysis, disability, specific behavioural disturbances of the patients as well as caregiver's age, type of relationship and living in the south of Italy were observed to be a major risk factor for HBDDA.  Conclusion: The targeted use of scales specifically assessing BDDA of the caregiver and the identification of particular patient and caregiver characteristics are able to allow a precise and early definition of caregivers at high risk of burden and distress. This might be helpful in planning the correct social/clinical/rehabilitative approach. Copyright © 2005 John Wiley & Sons, Ltd.

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Negative/positive home-based caregiving appraisals by informal carers of the elderly in Japan

This study aimed to determine factors associated with negative/positive home-based caregiving appraisals by informal carers of older people in Japan to consider which family carers’ community health nurses should focus on.

Because of the increasing older population in Japan, those needing a high level of care have become more dependent on informal carers. Carers’ health is an important aspect of caregiving. Community health nurses play an important role in assessing carers’ health, and carer appraisals, that is, how carers perceive their caregiving work, may help them better understand the health state of carers.

This quantitative study examined 192 primary carers of the elderly (care level >3) who used home-visiting nursing services in both rural and urban Japanese communities. The Japanese version of the Zarit scale (22 items) was used for negative appraisal and a positive caregiving appraisal scale (14 items) for positive appraisal. Participants with above-median scores (care burden, 30.0; positive caregiving appraisal, 39.0) were categorized as having a high care burden and high positive appraisal. To determine factors associated with appraisals, multinomial regression analysis was performed. Negative/positive appraisals were separately set as a dependent variable, and 17 items relating to carer characteristics, care-recipient characteristics, and external variables were set as independent variables. This was followed by stepwise regression and backward elimination.

With respect to care burden, positively associated factors were sekentei or social pressure [odds ratio (OR) 4.25, 95% confidence interval (CI) 1.39–13.04], caregiving obligation (OR 3.11, 95% CI 1.43–6.77), spouse carer (OR 2.58, 95% CI 1.05–6.35), daughter-in-law carer (OR 3.68, 95% CI 1.31–10.34), and depression (OR 50.58, 95% CI 13.85–184.67). With respect to positive appraisal, negatively associated factors were caregiving obligation (OR 0.29, 95% CI 0.15–0.53), male carer (OR 0.44, 95% CI 0.21–0.92), and daughter-in-law carer (OR 0.29, 95% CI 0.12–0.74).

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Meeting the needs of patients' families in intensive care units

A review of articles published between 2000 and 2013, retrieved from several databases, was conducted to identify research findings regarding nursing interventions intended to meet the needs of the family members of patients in the intensive care unit. The dimensions of need identified were support, comfort, reassurance, information and closeness, with reassurance, information and closeness being the most important. Overall, the needs of patients’ family members were unmet. The results of studies revealed that providing families with proactive communication strategies and information via brochures or leaflets, developing education programmes and establishing family-centred care may be effective in increasing family members’ satisfaction, improving their understanding of the patient’s condition and decreasing anxiety and depression, and post-traumatic stress disorder. Consequently, nurses should promote comprehensive family-centred care by using the best evidence to meet families’ needs. However, more experimental studies are required to determine the effectiveness of specific interventions.

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Dying, death and bereavement: a qualitative study of the views of carers of people with heart failure in the UK

Background: This paper explores carers' views of dying, death and bereavement for family members who had recently died with heart failure adding to a growing literature on end of life experiences for people with conditions other than cancer.

Methods: Twenty interviews were conducted with bereaved carers of older people with heart failure (HF) who had been participating in a longitudinal study. Carers were approached in writing 3 months after the death. Interviews were transcribed verbatim and analysed thematically with the assistance of NUD*IST.

Results: Findings were grouped into three time periods: prior to death; the death itself and bereavement. Most carers found discussions about end of life with their family member prior to death difficult. Dissatisfaction with the manner of the death was focused around hospital care, particularly what they believed to be futile treatments. In contrast deaths in the home were considered 'good'. Carers adopted a range of coping strategies to deal with grief including 'using their faith' and 'busying themselves' with practicalities. There was some satisfaction with services accessed during the bereavement period although only a small number had taken up counselling.

Discussion: Our findings suggest that an absence of discussion about end of life care wishes with family members or health professionals is a barrier to advance care planning. Carers' perceptions about prioritising making the dying person comfortable can be in conflict with doctors' decisions to treat. Whilst carers report a range of strategies adopted in response to bereavement there is a need for continued support for vulnerable carers after the death of the person with HF.

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Caregiver burden of terminally-ill adults in the home setting

A caregiver is an unpaid person, typically a family member or friend, who helps an ill person with the physical care and management of a disease. The task of care-giving results in additional responsibilities on the caregiver's daily life, and occupies the caregiver's time, energy, and attention, which is demanding and complex. The burden from care-giving, when prolonged, might affect the physical health of caregivers, causing symptoms, such as anxiety and depression, leading to a negative impact on their capacity for social engagement. This information sheet focuses on the best available evidence on factors that influence caregiver burden of the terminally-ill person, and provides some recommendations for practice. 

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Supporting informal carers of dying patients : the district nurse’s role

This article explores the role of the district nurse in supporting family and friends who act as informal carers for patients who wish to die at home. The district nurse can support carers by promoting patient comfort, assessing carer needs, using communication and counselling skills, providing timely information, planning for anticipated needs, and co-ordinating and liaising with appropriate services and professionals. This requires the district nurse to develop a trusting carer-nurse relationship. The Gold Standards Framework and Liverpool Care Pathway for the Dying Patient are discussed as a means of guiding healthcare professionals to optimise palliative care for patients and carers. The author suggests that the principles discussed are equally applicable to any nurse who cares for dying patients and their families. 

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People with dementia living alone: what are their needs and what kind of support are they receiving?

Background: In the U.K. about 141,460 people with dementia (PWD) live alone. They are at risk of social isolation and inadequate social and medical supervision. The aims of this study were to identify the needs of PWD living alone and to compare the needs of PWD living alone versus those living with others. It was predicted that PWD living alone would have significantly more unmet needs than those living with others.; Methods: 152 PWD were interviewed about their cognitive status and quality of life (QoL); and 128 informal carers were interviewed about the PWD's QoL, social networks, behavioral and psychological symptoms (BPSD), functional status, and services used. For 24 PWD no carer was available. Carers were also interviewed about their own symptoms of depression, anxiety, burden, and satisfaction. Researchers rated PWD's needs. One-third of the PWD (50) were living alone.; Results: PWD living alone had significantly more unmet needs (M = 3.9, s.d. 3.1) than those living with others (M = 2.0, s.d. 2.0) (U = 1578, p < 0.01) particularly in the areas of looking after home (χ2 = 17.23, p < 0.001), food (χ2 = 13.91, p < 0.002), self-care (χ2 = 10.23, p < 0.002) and accidental self-harm (χ2 = 16.51, p < 0.001). The most frequent unmet needs were daytime activities (27, 54.0%), company (26, 52.0%), psychological distress (22, 44.0%), eyesight/hearing (16, 32.0%), and accidental self-harm (16, 32.0%). Conclusion: PWD living alone are a vulnerable group who are at increased risk for unmet social, environmental, psychological and medical needs. This study illustrates the need to identify these individuals and to make provisions among social service agencies to monitor their well-being regularly and provide a higher level of support when needs are identified.

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The impact of being the intermediate caring generation and intergenerational transfers on self-reported health of women in Ireland

Objectives: To investigate the associations with being the “sandwich generation” in older women in Ireland and its impact on self-reported health.

Methods: Analysis of 3,196 women from wave 1 of the Irish Longitudinal Study on Ageing (TILDA) was undertaken. Poisson regression was used to determine whether intergenerational transfers, were associated with self-rated physical health and depression, when controlling for other socio-demographic variables.

Results: Multivariate analysis found that women in the sandwich generation who financially supported their children had better self-rated physical health (poor/fair health relative to excellent; RR 0.84, 95 % CI 0.72–0.97). Conversely, the women who provided other care for their children showed evidence of poorer mental health (case-level depression, RR 1.35, 95 %CI 1.05–1.73). Providing financial support for parents was associated with case-level depression (RR 2.21, 95 %CI 1.26–3.86).

Conclusions: Supporting two generations was associated with both better self-rated health and poorer mental health, depending on the type and direction of the transfers. This generation of women have substantial caring responsibilities. Strategies to address the stresses associated with bi-directional intergenerational transfers are needed.

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Identifying target groups for the prevention of depression among caregivers of dementia patients

Background: Depression in informal caregivers of persons with dementia is a major, costly and growing problem. However, it is not yet clear which caregivers are at increased risk of developing depression. With this knowledge preventive strategies could focus on these groups to maximize health gain and minimize effort.

Methods: The onset of clinically relevant depression was measured with the Center for Epidemiologic Studies - Depression Scale in 725 caregivers who were not depressed at baseline and who were providing care for a relative with dementia. Caregivers were followed over 18 months. The indices calculated to identify the most important risk indicators were: odds ratio, attributable fraction, exposure rate and number needing to be treated.

Results: The following significant indicators of depression onset were identified: increased initial depressive symptoms, poor self-rated health status and white or Hispanic race/ethnicity. The incidence of depression would decrease by 72.3% (attributive fraction) if these risk indicators together are targeted by a completely effective intervention. Race/ethnicity was not a significant predictor if caregivers of patients who died or were institutionalized were left out of the analyses.

Conclusion: Detection of only a few characteristics makes it possible to identify high-risk groups in an efficient way. Focusing on these easy-to-assess characteristics might contribute to a cost-effective prevention of depression in caregivers.

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Cost effectiveness of a manual based coping strategy programme in promoting the mental health of family carers of people with dementia (the START (STrAtegies for RelaTives) study): a pragmatic randomised controlled trial

Objective To assess whether the START (STrAtegies for RelatTives) intervention added to treatment as usual is cost effective compared with usual treatment alone. Design Cost effectiveness analysis nested within a pragmatic randomised controlled trial. Setting Three mental health and one neurological outpatient dementia service in London and Essex, UK. Participants Family carers of people with dementia. Intervention Eight session, manual based, coping intervention delivered by supervised psychology graduates to family carers of people with dementia added to usual treatment, compared with usual treatment alone. Primary outcome measures Costs measured from a health and social care perspective were analysed alongside the Hospital Anxiety and Depression Scale total score (HADS-T) of affective symptoms and quality adjusted life years (QALYs) in cost effectiveness analyses over eight months from baseline. Results Of the 260 participants recruited to the study, 173 were randomised to the START intervention, and 87 to usual treatment alone. Mean HADS-T scores were lower in the intervention group than the usual treatment group over the 8 month evaluation period (mean difference −1.79 (95% CI −3.32 to −0.33)), indicating better outcomes associated with the START intervention. There was a small improvement in health related quality of life as measured by QALYs (0.03 (−0.01 to 0.08)). Costs were no different between the intervention and usual treatment groups (£252 (−28 to 565) higher for START group). The cost effectiveness calculations suggested that START had a greater than 99% chance of being cost effective compared with usual treatment alone at a willingness to pay threshold of £30 000 per QALY gained, and a high probability of cost effectiveness on the HADS-T measure. Conclusions The manual based coping intervention START, when added to treatment as usual, was cost effective compared with treatment as usual alone by reference to both outcome measures (affective symptoms for family carers, and carer based QALYs).

Trial Registration ISCTRN 70017938

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Exploring the collective hospice caregiving experience

Background: Collective caregiving, performed by caregivers working in pairs (informal primary and secondary caregivers working together), is common in the hospice setting. Research suggests that caregiving pairs may experience different caregiver outcomes. However, little is known about how caregiving pairs differ from solo caregivers (informal primary caregivers) on outcome measures.

Objective: The goal of this study was to determine whether being in a caregiver pair affected caregiver anxiety and depression and how outcomes changed over time.

Design: A mixed model analysis was used.

Setting/subjects: Hospice caregivers (260 solo caregivers and 44 caregivers in 22 pairs) who participated in a larger, randomized controlled trial completed caregiver measures upon hospice admission and periodically until the death of the patient or hospice decertification.

Measurements: Measured were caregiver quality of life, social support, anxiety, and depression.

Results: Caregiver pairs had higher anxiety and depression scores than solo caregivers. Emotional, financial, and physical quality of life were associated with decreased depression, whereas only emotional and financial quality of life were correlated with lower levels of anxiety. Social support was associated with lower levels of depression and anxiety.

Conclusions: Despite assumptions that social support is positively facilitated vis-a-vis collective caregiving, caregiving pairs may be at higher risk for anxiety and depression. Future research is needed to address why individuals become anxious and/or depressed when working as part of a caregiving pair.

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The quality of life of carers of patients with severe lung disease

Severe lung disease is known to affect the lives of not only the sufferer but also his/her family. This qualitative phenomenological study identified seven patients with severe lung disease and studied the quality of life of their carers (five female, two male) who were not fully employed, living in the same house or nearby. In a semistructured interview, the carers were asked about looking after their spouse or relative, whether they had support and the effect of caring on their health and finances. The findings showed the carers' lives to be severely restricted, all carrying a heavy emotional burden of frustration, depression and isolation: part-time jobs were important both financially and to reduce isolation. Family support was vital to their coping, but few had received professional help. All were affected by reduction in income, but claiming allowances was confusing; unpredictability of the disease complicated much-needed recreation and holidays. Findings were similar to previously published data.

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Caregiver’s spirituality and its influence on maintaining the elderly and disabled in a home environment

This study examined the role that faith-based organizations play for caregivers in maintaining the elderly and disabled in their homes. The study explored if persons who use religious beliefs and practices cope with caregiver stress better than those who do not use religious beliefs and practices. The study also explored the role of religious coping as a factor affecting decisions to institutionalize, and the role that faith-based practices and organizations play in helping caregivers maintain the elderly and disabled in their homes.

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Psychological and physiological effects of caring for patients with treatment-resistant depression

Carers of patients with psychiatric disorders show high levels of anxiety and depression, possibly mediated through disruption of the hypothalamo–pituitary–adrenal (HPA) axis. Among carers of patients with treatment-resistant depression (TRD), we set out to determine the psychological and physiological (HPA axis) consequences of caring, and the association of these consequences with long-term outcome in patients.

Thirty-five informal carers of patients with severe TRD requiring in-patient treatment were recruited and compared with 23 controls. HPA-axis activity was assessed by measuring post-awaking salivary cortisol. The Involvement Evaluation Questionnaire (IEQ) and the General Health Questionnaire-12 (GHQ-12) were administered to measure carer burden and psychiatric caseness respectively. Independent t tests were used to compare differences between carers and controls and a linear regression model was used to determine the association of post-awakening cortisol with carer status while controlling for confounding variables. Data on long-term patient outcome (12 to 83 months), measured using the Hamilton Depression Rating Scale (HAMD), were also obtained and linear regression was used to determine the association b