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Carers and health

The following resources examine the impact of caring on carers' health and wellbeing.

Click on the title of any resource to find out more about the source of the information such as the type of reference, ISBN/ISSN, publication year, keywords. A number of these fields can be used to find further resources i.e. with the same keywords, or by the same author using the links on the right-hand side and within the Key Information box.

You can also click on an author's name in the list below to find further resources by that author, and use the DOI and other links to access the original source material (note: some source materials require subscription or permission to access).

Worst hit: dementia during coronavirus

The coronavirus pandemic is having a devastating impact around the world. In the UK, people affected by dementia have been hardest hit and our fragmented social care system has been exposed for all to see.

Alzheimer’s Society is the UK’s leading dementia charity, and in this report we bring together evidence from a wide range of sources to shine a light on the impact of coronavirus disease 2019 (COVID-19) on people who have dementia and those who care for them

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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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Covid-19 and the Impact on Family Carers

This paper will examine key rapid surveys and research studies which have been conducted by various researchers and organisations both in a specifically Irish context and internationally.

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Factors associated with the risk of cardiovascular disease in family caregivers of people with dementia: a systematic review

Objective: This study aimed to systematically review studies that reported factors associated with the risk of cardiovascular disease (CVD) in family caregivers of people with dementia (PWD). Methods: Literature was searched in PubMed, Medline, CINAHL, and PsycINFO using keywords generated from the terms "dementia", "caregiver", and "cardiovascular disease". We included studies that examined factors associated with CVD risk in family caregivers of PWD, those with longitudinal or cross-sectional study designs, and those published in English. Results: A total of 34 studies were included in this review. Stress and depressive symptoms, pleasant leisure activity, coping self-efficacy and coping strategy, physical activity, and social support were the main modifiable associated factors of CVD risk in family caregivers of PWD. However, the association between sleep and CVD risk was unclear. Caregiving status, the duration of caregiving, genes, and race, were the main non-modifiable associated factors of CVD risk in family caregivers. Conclusion: This review showed seven modifiable factors of CVD risk. In particular, leisure activities, physical activity, and social support were significantly negatively associated with the risk of CVD. Researchers and clinical professionals are recommended to consider these risk factors when they develop interventions to reduce CVD risk in family caregivers of PWD.

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Spousal bereavement after dementia caregiving: A turning point for immune health

Losing a spouse can increase the risk for premature mortality, and declines in immune health are thought to play a role. Most of the supporting data have come from cross-sectional studies comparing already-bereaved individuals to matched controls, which provides valuable information about health disparities between groups but does not reveal health changes over time. Moreover, the health consequences of bereavement may be unique for dementia family caregivers, a large and growing segment of the population. The current study sought to evaluate the course of health around 52 dementia spousal caregivers’ bereavement by capturing lymphocyte proliferation to Con A and PHA and self-rated health before and after spousal loss. To investigate the moderating role of the social environment, we examined associations between social ties and health trajectories before and after spousal loss. Using piecewise linear mixed models to allow for turning points in caregivers’ trajectories, we found that, for the average caregiver, lymphocyte proliferation to both mitogens weakened as bereavement neared and continued to decline after the loss, but at a slower pace. In tandem, perceived health degraded as bereavement approached but rebounded thereafter. Further, we found that socially isolated caregivers showed marked declines in immune responses to Con A and PHA over time both before and after bereavement, whereas their socially connected counterparts had shallower declines to PHA and maintained a level immune response to Con A. In addition, socially isolated caregivers reported poorer health before and after bereavement compared to their counterparts, whose self-rated health declined as the loss neared but later recovered to exceed prior levels. These findings shed new light on the dynamics of immune function in response to spousal bereavement after dementia caregiving: longitudinal data reveal a pattern of health recovery following caregivers’ loss, particularly among those with more robust social networks prior to bereavement. 

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Exploring health and wellness among Native American adults with intellectual and/or developmental disabilities and their family caregivers

Background: Adults with intellectual and/or developmental disabilities (IDD) experience health inequities, and those who also identify as a member of an ethnic minority group face additional health inequities. In the United States, a majority of adults with IDD continue to be supported by family caregivers making their health equity also important. The purpose of this study was to explore how Native American adults with IDD and their family caregivers experience health and wellness. Method: This community-engaged research was guided by a Community Advisory Board (CAB) with study participants completing a Photovoice project. Results: Participants identified individual, family and community level influences on health and wellness including the importance of participation in meaningful activities and connection to culture. Conclusions: In order to address health inequities, more research is needed to understand health and wellness from the unique perspectives of individuals with IDD and those from racial and ethnic minority groups.

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Experiences of Caregivers Caring for a Family Member Who Is Using Hemodialysis

In this qualitative phenomenological study using a purposive sample, six caregivers of patients on hemodialysis were interviewed about their experiences of caring for a family member who uses hemodialysis. Six major themes and 12 subthemes were identified. Perceptions of caregivers are that caregiving is hard work and stressful; however, caregivers found the experience to be meaningful, even though the stress may interfere with their own health status. Study limitations include a small sample that may not represent the entirety of caregivers' perspectives. Implications for practice include developing informal and formal support systems and exercise programs that help this population manage the stress associated with caregiving for family members using hemodialysis.

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Health-Related Quality of Life and Use of Hospital Services by Patients with Heart Failure and Their Family Caregivers: A Multicenter Case-Control Study

Background: Heart failure (HF) causes high rates of hospital admissions. It is known that disease progression impacts the health-related quality of life (HRQoL) of both patients and caregivers, yet to date, this finding is based on cross-sectional studies with limited samples. Objectives: The study aim is to analyze the relationship between HF patients’ use of hospital services (a proxy for disease progression) and the HRQoL of their family caregivers. Methods: This work is a multicenter nested case-control study on a population of patients admitted to hospitals in southern Spain due to heart failure. The sample comprised 530 patient-caregiver dyads. Hospital admission data were retrospectively collected for the 5 years prior to inclusion in the study. Bivariate analyses and multivariate logistic regression were used to determine associations between patient deterioration and caregivers’ quality of life. Results: Patients’ use of hospital services was associated with worsened quality of life for family caregivers, with an overall OR of 1.48 (95% CI: 1.23-1.79). A positive correlation was found between patients’ perceptions of their physical health and the perceived mental health of caregivers (r = 0.127, p = 0.004) and between the perceived mental health of both (r = 0.291; p <0.0001). Conclusions: Greater use of hospital services by patients with HF is an independent predictor of deterioration of family caregivers’ HRQoL. The physical and mental components of patients’ and their family caregivers’ HRQoL interact and influence each other. Additional factors, such as the nature and intensity of care provided, also determine the worsening of a family caregiver’s HRQoL. Clinical Relevance: These results can be used to identify family caregivers of people with heart failure at risk of suffering a deterioration in their health-related quality of life. Increased use of hospital services is an independent predictor of the deterioration of the family caregivers’ health-related quality of life. Since clinical nurses are the main provider who gives support and education to family caregivers, they should be alert to this situation and individualize interventions to prevent this deterioration. 

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Longitudinal evaluation of the effects of illness perceptions and beliefs about cardiac rehabilitation on quality of life of patients with coronary artery disease and their caregivers

Background: Patients' negative illness perceptions and beliefs about cardiac rehabilitation (CR) can influence uptake and adherence to CR. Little is known about the interpartner influence of these antecedent variables on quality of life of patients with coronary artery disease (CAD) and their family caregivers. The aims of the study were: 1) to assess differences in illness perceptions, beliefs about CR and quality of life between patients with CAD and their family caregivers upon entry to a CR programme and at 6 months follow-up; and 2) to examine whether patients' and caregivers' perceptions of the patient's illness and beliefs about CR at baseline predict their own and their partner's quality of life at 6 months. Methods: In this longitudinal study of 40 patient-caregiver dyads from one CR service, patients completed the Brief Illness Perception Questionnaire and Beliefs about Cardiac Rehabilitation Questionnaire at baseline and 6 months; and caregivers completed these questionnaires based on their views about the patient's illness and CR. The Short-Form 12 Health Survey was used to assess patients' and caregivers' perceived health status. Dyadic data were analysed using the Actor-Partner Interdependence Model. Results: Most patients (70%) were men, mean age 62.45 years; and most caregivers (70%) were women, mean age 59.55 years. Caregivers were more concerned about the patient's illness than the patients themselves; although they had similar scores for beliefs about CR. Patients had poorer physical health than caregivers, but their level of mental health was similar. Caregivers' poorer mental health at 6 months was predicted by the patient's perceptions of timeline and illness concern (i.e. partner effects). Patient's and caregiver's illness perceptions and beliefs about CR were associated with their own physical and mental health at 6 months (i.e. actor effects). Conclusions: Overall, the patients and caregivers had similar scores for illness perceptions and beliefs about CR. The actor and partner effect results indicate a need to focus on specific illness perceptions and beliefs about CR, targeting both the individual and the dyad, early in the rehabilitation process to help improve patients and caregivers physical and mental health (outcomes). 

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Translating an Evidence-based Multicomponent Intervention for Older Adults With Dementia and Caregivers

Background and Objectives Effective community-based programs to maintain health and well-being of adults with dementia are needed. This article describes the translation, implementation, and effectiveness of a multicomponent exercise plus behavioral/psychosocial intervention (Reducing Disability in Alzheimer's Disease-NorthWest [RDAD-NW]) conducted by staff in regional Area Agencies on Aging (AAAs). Research Design and Methods Staggered multiple baseline design was used; 10 AAAs, 20 case managers, and 255 community-residing persons with dementia (PWDs), and family caregivers were enrolled. RDAD-NW was conducted in-home over 6 weeks with aerobic/endurance, strength, and balance/flexibility exercises, dementia education, training to increase pleasant events, and activator-behavior-consequence problem-solving approach. Outcomes included case manager treatment fidelity, and caregiver/PWD physical activity, restricted activity days, physical functioning, quality of life, and affect. Results RDAD-NW was successfully translated and implemented by AAA agency staff through their usual service provision mechanisms. Staff responded positively and delivered the program with a high degree of fidelity. Caregiver/PWD dyads also responded favorably engaging in both exercise and behavioral/psychosocial portions of the program. A total of 207 dyads (81%) completed the intervention and 140 (55%) completed the 13-month follow-up. PWD physical activity increased significantly pre- to posttreatment (p < .001, ES = .54), and 13 months (p < .01, ES = .21). Quality of life of PWD increased significantly pre- to posttreatment (p < .001, ES = .29); caregiver depression improved pre- to posttreatment (p = .01, ES = −.18). Discussion and Implications RDAD-NW was successfully translated and implemented by AAA case managers and resulted in increased physical activity and improved behavioral and emotional outcomes of caregiver/PWDs. Results support continued dissemination and implementation of RDAD-NW.

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Intergenerational Relationships, Family Caregiving Policy, and COVID-19 in the United States

Families and intergenerational relationships are important sources of risk for COVID-19 infection, especially for older adults who are at high risk of complications from the disease. If one family member is exposed to the virus they could serve as a source of transmission or, if they fall ill, the resources they provide to others could be severed. These risks may be especially heightened for family members who work outside the home and provide care, or for those family members who care for multiple generations. Policies have the potential to help families bear the burden of these decisions. This essay argues that policies that address health, employment, and other social issues have implications for families, and that policies aimed at families and caregivers can affect the health, employment, and the general well-being of the nation.

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Caregivers’ burdens and barriers in accessing healthcare services for dependent elders in Thailand

Background: Elders report poor health status and a greater need for healthcare services; however, in Thailand there are barriers in accessing healthcare services for these individuals. Objective: To study the health status of dependent elders in Thailand, the barriers in accessing health services for them, the impact resulting from these barriers, and the impact on caregivers when taking care of dependent elders. Materials and Methods: The study was conducted in 4 provinces in Thailand: Nonthaburi, Pathumthani, Ayutthaya, and Lopburi. Data were collected from 243 home-bound and bed-bound elders and 124 caregivers. The research tools both qualitative and quantitative parts were used to interview dependent elders and their primary caregivers. Results: The study found that 96.5% of the dependent elders had chronic disease comorbidity with non-communicable. The barriers in accessing health services included long waits for healthcare services, transportation expenses to these services, medical expenses, no mobility support or body assist tools, no accessibility to information, unawareness of their rights in terms of medical treatment, and caregiver issues. These barriers affected the dependent elders regarding their physical and mental health and financial issues. Moreover, taking care of dependent elders had the impact on caregivers in terms of physical and mental health, family relationships, social participation, and financial issues. Conclusion: There are still barriers in accessing health services for dependent elders. Furthermore, taking care of them is caregivers’ burden. Therefore, caregivers should be supported. 

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Comparison of Healthcare Utilization Between Informal Caregivers and Non-Caregivers: An Analysis of the Health Information National Trends Survey

Objective: The demands of providing unpaid care for someone with a disabling health condition (i.e., informal caregiving) can limit attention to one’s own health needs. Using a nationally representative survey, this study examines whether caregivers report different healthcare utilization relative to non-caregivers. Method: Participants in the Health Information National Trends Survey 5, Cycle 1 reported whether they provided unpaid care and healthcare utilization outcomes. Logistic regressions and chi-square tests with jackknife variance estimation were used. Results: Caregivers (N = 391) did not differ from non-caregivers (N = 2,894) in time since routine checkup or number of healthcare appointments in the past year (p values >.25). Among caregivers, number of healthcare appointments differed according to caregivers’ relationship to the care recipient (p =.04). Discussion: Findings suggest that informal caregivers access routine healthcare at a frequency similar to non-caregivers. Further research should determine whether this utilization is optimal, or whether increased utilization during caregiving might help attenuate caregivers’ longer term morbidity. 

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The Burden of Mental Illness and Mental Distress on Family Members

BACKGROUND: The Organisation for Economic Cooperation and Development reports that one in every two people experiences a mental illness in their lifetime, and developed policy guidelines to address the impact of mental health-related issues on employment and health. The results of this policy initiative have been reported in many member countries but no survey findings are available yet for Japan. Previous studies in Japan focused on the social costs of mental illness, but little empirical evidence exists on burdens created by mental illness in individual households. AIMS: This study investigated the effects of mental illness and mental distress on family members' employment and sleep time. Employed men and women family members and unemployed women family members who wanted to work were included in the study. METHODS: Japanese survey data from the 2013 Comprehensive Survey of Living Conditions were analyzed to identify the above-mentioned effects. A propensity score matching method was used to create a valid comparison group for family members of patients with mental illness and distress. RESULTS: For depression, family member average weekly work hours decreased by a range of 1.06 (p%lt;0.01) to 1.18 (p<0.01) for men, and 0.53 (p<0.1) to 1.06 (p<0.05) for women. For dementia (termed "major neurocognitive disorder" in the DSM-5), there were no statistically significant effects on work hours in men, but the work hours of employed women increased, ranging from 1.15 (p<0.05) to 1.25 (p<0.01). Mental illness in a family member also significantly influenced future employment prospects of unemployed women. In family members of patients with dementia, sleep time decreased by a range of 3.6 minutes (p<0.05) to 4.8 minutes (p<0.01) per night for men and 12 minutes (p<0.01) per night for women. DISCUSSION AND LIMITATIONS: These findings can add to the existing evidence on the effects of mental illness and distress on family members' work hours and sleep time in Japan, which are consistent with research from other countries such as Germany, the UK, and the US. This study has two limitations. First, the magnitude of the effect of mental illness is limited with respect to the illness category in our study, since the severity of the condition and the impact on actual daily life may vary across categories or differ even within the same category. Second, measurement error might exist in the self-reported mental illness measures. POLICY IMPLICATIONS: First, cooperation and mutual support between employers and the community are necessary to support working family caregivers by allowing them to adjust work schedules to accommodate caregiving responsibilities. Second, social institutional policies are needed that reduce the burden of informal caregiving for family members with mental illness and increase access to long-term care for those in need. Third, since mental illness and distress have been shown to affect family members' sleep schedules, health care programs must focus on promoting caregivers' general health. IMPLICATIONS FOR FUTURE RESEARCH: To further address the burden of mental illness and distress on family members, future research should examine illness severity as measured by Activities of Daily Living.

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Cost-Effectiveness and Effects of a Home-Based Exercise Intervention for Female Caregivers of Relatives with Dementia: Study Protocol for a Randomized Controlled Trial

Previous research has proposed a range of support interventions to mitigate the adverse impact of caregiving on the daily life of caregivers of relatives with dementia. However, the effectiveness of these interventions shows a high variability. Informal caregivers usually lack the time and/or live too far from conventional facilities to do physical exercise, especially those who live in rural areas. Thus, home-based interventions may be more efficacious due to their greater convenience for this population. The present work proposes and describes a study protocol for a randomized control trial that will analyze the efficacy and cost-effectiveness of a home-based, structured individual physical exercise intervention to improve the health-related quality of life and the mental health of female informal caregivers of relatives with dementia. The nine-month-long intervention will comprise participation in two supervised physical exercise sessions per week at the caregiver's home. The proposed study outcomes will be: (1) feasibility of and adherence to the home-based provision of the intervention; (2) improvement in physical fitness and quality of life; and (3) reduction in subjective burden, psychological symptomatology and depression. Analyses will also be performed to determine the cost-effectiveness after the intervention. In conclusion, this intervention might thus represent a tailored and feasible strategy to help caregivers cope with the physical and psychological stress resulting from caregiving-related responsibilities, and it could represent a novel cost-effective support home-based intervention for caregivers.

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Caregiving burden and sleep quality amongst family caregivers of Chinese male patients with advanced cancer: A cross-sectional study

Purpose: To examine the level of caregiving burden and sleep quality as well as their interrelationship amongst family caregivers of Chinese male patients with advanced cancer. Method: A cross-sectional study was conducted in Hong Kong. The Caregiver Reaction Assessment (CRA) and the Pittsburgh Sleep Quality Index (PSQI) were used to measure caregiving burden and sleep quality of the family caregivers. Results: A total of 96 family caregivers were recruited. Disrupted schedule (3.8; SD = 0.8) was rated as the most affected consequence of caregiving burden. Around 78.1% of the caregivers suffered from sleep problems. Hierarchical multiple regression revealed that health problems due to caregiving burden was independently associated with poor sleep quality after controlling for socio-demographic characteristics of both patients and caregivers (regression coefficient, B = 2.09, P = 0.012). Conclusions: Caregiving burden amongst family caregivers of male patients with advanced cancer was remarkably high and associated with poor sleep quality. Strategies aiming to alleviate caregiving burden of caregivers may help break this vicious cycle to enhance the sleep quality of caregivers. Results also underscore the need to assess and develop intervention to relieve caregiving burden for family caregivers of cancer patients. 

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Anxiety in Informal Dementia Carers: A Meta-Analysis of Prevalence

Much of the carer literature has focused on depression and burden as primary outcomes and anxiety appear somewhat neglected. Providing evidence on the prevalence of carer anxiety is critical as it can enhance awareness among professionals, which in turn can lead to improved access to efficacious treatments. This meta-analysis updated the previous review conducted in 2007 to estimate the up-to-date prevalence of anxiety in informal carers for people with dementia. Literature searches were conducted in databases of published and unpublished literature. Events and sample size data were pooled using a random effects model to obtain an overall prevalence percentage. A total of 10 studies were included, resulting in a pooled estimate of anxiety prevalence at 32.1% (95% confidence interval: 20.6%-46.2%, P =.01). Significant heterogeneity was found, which was not reduced following sensitivity analysis. This study suggests anxiety is a prevalent difficulty experienced by dementia carers. Additional research recommendations and clinical implications are discussed. 

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Informal caregiving and physical activity among 204,315 adults in 38 low- and middle-income countries: A cross-sectional study

Data on the association between informal caregiving and physical activity (PA) levels are scarce, especially from low- and middle-income countries (LMICs). Furthermore, previous research has yielded conflicting results. Thus, we investigated this association in adults from 38 LMICs. Data from the World Health Survey (WHS), a cross-sectional, predominantly nationally representative survey conducted in 2002–2004, were analyzed. PA was assessed by the International Physical Activity Questionnaire and participants were dichotomized into those who do (≥150 min of moderate-to-vigorous PA per week) and do not (<150 min = low PA) comply with the World Health Organization PA recommendations. Those who provided help to a relative or friend (adult or child), because this person has a long-term physical or mental illness or disability, or is getting old and weak in the past year were considered to be informal caregivers. Multivariable logistic regression analysis was conducted to assess the associations. There were 204,315 adults aged ≥18 years from 38 LMICs included in this study [mean (standard deviation) age 38.6 (16.1) years; 50.7% female]. Overall, the prevalence of caregiving and low PA was 19.5% and 29.9%, respectively. After adjustment for potential confounders, caregivers were at a lower risk for low PA compared to non-caregivers (OR = 0.79; 95% CI = 0.72–0.86). Engagement in greater number of caregiving activities was associated with lower odds for low PA dose-dependently. Informal caregiving was associated with higher levels of PA in adults in LMICs. Future studies of longitudinal design are warranted to understand causality and the underlying mechanisms of this association. 

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The Burden of Care: A National Survey on the Prevalence, Demographic Characteristics and Health Problems Among Young Adult Carers Attending Higher Education in Norway

Objective The aim of the present study was to examine prevalence, characteristics and health outcomes among young adults (18 to 25 years) who provide informal care to family members or others with physical or mental illnesses, substance misuse or disabilities. Design The sample was obtained from a national survey in Norway from 2018 among students in higher education (the SHoT2018-study). The current sample comprise 40,205 participants, 70.2% women, mean age 22 years (SD = 1.7). Outcome Measures Participants answered questions on care responsibilities, mental health problems (The Hopkins Symptoms Checklist-25), insomnia (sleep questionnaire), somatic health (Somatic Symptom Scale-8), and life satisfaction (Satisfaction With Life Scale). Results 5.5% of the respondents reported having care responsibilities. Caring was associated with being female, single, having divorced parents, being an immigrant, and having financial difficulties. More mental health problems, insomnia, somatic symptoms, and lower life satisfaction were found among respondents with care responsibilities. Number of hours of caring was associated with negative health outcomes in a dose-response pattern. Conclusion Professionals within health care, social services and the educational system should be sensitized to the needs of young adults with care responsibilities for family members or others with illness, substance misuse, or disabilities. The negative health problems among these young adult carers (YACs) should be acknowledged, and adequate support made available.

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Analyzing the situation of older family caregivers with a focus on health-related quality of life and pain: a cross-sectional cohort study

Background For a significant proportion of the older population, increasing age is associated with health problems and worsening health. Older family caregivers are largely responsible for care of next-of-kin living at home, which impacts their own physical and mental health both positively and negatively. However, evidence is insufficient regarding the health situation of older caregivers. The aim of this study was to investigate health-related quality of life (HRQoL) and pain, and their associations, among caregivers aged >= 60 years. Methods The participants (n = 3444) were recruited from the Swedish National Study on Aging and Care-Blekinge and Good Aging in Skane during 2001-2004. Participants aged >= 60 years were selected randomly and underwent cognitive tests, with demographic information obtained through questionnaires. The response rate was 60%. A predefined research protocol was used. HRQoL was measured with the Short-Form Health Survey, dimension mental health. Logistic regression models were used to investigate the associations between HRQoL and pain as well as control factors. Results Family caregiving was reported by 395 (11.5%) of the participants, and 56.7% of the caregivers reported pain. Family caregivers reported lower pain intensity on the Visual Analogue Scale and were younger, on median, than non-caregivers. Irrespective of caregiver status, pain was associated with mental HRQoL. Concerns about personal health and financial status had the strongest associations with mental HRQOL in both groups, but the levels were higher among caregivers. Conclusion Pain was one factor associated with low HRQoL regardless of family caregiver status and remained important when controlling for factors related to advanced age. This finding remained among family caregivers, though they reported lower pain intensity. Factors other than pain were shown to be important to mental HRQoL and should also be taken into consideration when discussing actions for family caregivers to maintain and improve health and HRQoL.

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Characteristics and Health Status of Informal Unpaid Caregivers - 44 States, District of Columbia, and Puerto Rico, 2015-2017

What is already known about this topic? Informal, unpaid caregivers provide important support to family members, friends, and the health care system and might compromise their own health to provide this support.

What is added by this report? During 2015–2017, approximately 20% of respondents to the Behavioral Risk Factors Surveillance System survey were classified as caregivers. Nearly 20% of caregivers reported fair or poor health, with wide interstate variation, ranging from 11.7% to 34.4%.

What are the implications for public health practice? Because caregiving is a public health issue of increasing importance as the U.S. population ages, the health status of caregivers warrants special attention.

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Factors associated with quality of life in the perspective of the elderly caregiver with Alzheimer's disease

This study aimed to know the factors associated with quality of life (QOL) of elderly caregivers diagnosed with Alzheimer's disease from the perspective of these individuals. It was a descriptive study with qualitative approach based on the Collective Subject Discourse method. Twenty elderly caregivers diagnosed with Alzheimer's disease participated, during a month, in the period the month September 18 to October 18, 2017. Data collection was done through interviews with caregivers of elderly with Alzheimer's disease. The questions were asked and recorded on tape recorder, with the permission of the interviewee. Data were analyzed by the Descending Hierarchical Classification (DHC). Five classes were obtained: Quality of life concept for the elderly caregiver; Behavior of the elderly with Alzheimer; Memory problems in the elderly and repercussions on the caregiver's work; Change in family caregiver lifestyle; and Repercussion of "being a caregiver" in the quality of life. QOL was related to a range of factors (emotional, physical, financial, disease state in the elderly and the degree of knowledge of the caregiver about the disease). Caregivers have pointed out that non-harmony between these factors can be crucial to affect your personal and professional life as well as your QOL.

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Care in the Time of Coronavirus: Why care work needs to be at the centre of a post-COVID-19 feminist future

New research by Oxfam and partners reveals that while COVID-19 and the related containment efforts have caused increases in women’s – and men’s – unpaid care workloads, women are still doing the bulk of this work. Women living in poverty, single mothers and essential workers as well as those belonging to minority racial and ethnic groups are being pushed furthest to the margins. It shows the real consequences this has for the health, economic security and wellbeing of these women and their families. Women report feeling more anxious, depressed, overworked or ill because of their increased unpaid care work.  Care work is essential to the healthy functioning of our societies and economies and must be better supported through policy and social norms change.  Care work must be at the heart of a feminist COVID-19 recovery.

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Does the experience of caring for a severely disabled relative impact advance care planning? A qualitative study of caregivers of disabled patients

The aging of the Taiwanese population has become a major issue. Previous research has focused on the burden and stress faced by caregivers, but has not explored how the experience of these caregivers influences decisions of advance care planning (ACP). Semi-structured and in-depth interviews were conducted. Qualitative content analysis was used to identify important themes. Five themes and fourteen sub-themes were identified: (1) Past experiences: patient wishes, professional recommendations, and expectation about disease progress; (2) Impact of care on family members: positive affirmation, open-minded life, social isolation and health effects, and financial and life planning effects; (3) Attitude toward life: not forcing to stay, and not becoming a burden, (4) Expected proxy dilemmas: torment between doing or not, seeing the extension of suffering and toil, and remorse and self-blame; (5) Expectation of end of life (EOL) care: caregiver’s experience and EOL care decisions, and practicality of EOL decision making. After making multiple medical decisions for their disabled relatives, caregivers are able to calmly face their own medical decisions, and “not becoming a burden” is their primary consideration. It’s suggested that implementation of shared decision-making on medical care for patients with chronic disability will not only improve the quality of their medical care but also reduce the development of remorse and guilty feelings of caregivers after making medical decisions. 

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Understanding the Impacts of Caregiver Stress

PURPOSE/OBJECTIVES: Identifying risk factors associated with caregiver stress and suggesting methods for systematic caregiver screening for caregiver strain, depression, and anxiety. PRIMARY PRACTICE SETTING: Emergency department, primary care, and other health care settings. FINDINGS/CONCLUSIONS: Caregiver stress can lead to multiple negative outcomes including declines in physical health, increased mental health concerns, and overall decreased quality of life. Caregiver stress also leads to increased financial costs to the person, family, and health care systems, making it a public health issue. Recognizing caregiver stress is the initial step to identifying those in need of support and to providing quality care. Fortunately, caregiver stress can be prevented or reduced using a culturally competent multidimensional approach to addressing social determinants of health and unmet physical, psychological, and social/emotional needs of caregivers. IMPLICATIONS FOR CASE MANAGEMENT: Case management plays a critical role in assessing, educating, advocating, creating care plans, and advocating for both the caregiver and the care recipient.

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Systematic review: Influence of self-help groups on family caregivers

Introduction: Since the incorporation of women into the world of work, together with the progressive ageing of the population and the increase of chronic diseases, there is an alteration in the role of the caregiver, due to the physical, work and family burden it bears, emotional conflicts and with other family members. Mutual aid can be an effective alternative to promoting the well-being of caregivers, as well as their families and dependents. Objective: To know the characteristics of self-help groups for family caregivers and their influence on caregivers, the dependent and family health. Methodology: Systematic review. The search strategy included the Pubmed, Scopus, Psycinfo, Eric, Cochrane plus and CSIC databases; selecting scientific articles in either Spanish, Catalan, English, Portuguese or French, for the last 10 years. Results: 12 articles related to the study topic were selected. All studies show that participation in these groups can improve the physical-psychological well-being, the health of caregivers and, at the same time, reinforce their sense of social support, although there is a lack of studies in our environment, with a size higher quality sample. Conclusions: Caregivers benefit from participating in self-help groups. Therefore, they should become a routine component of the family caregiver. 

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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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The COVID-19 Pandemic: Challenges and opportunities for carers in NSW

Carers NSW has been closely monitoring COVID-19 developments in NSW, the ongoing government response and the wide ranging impacts the virus and associated social distancing requirements have had on carers. Carers have experienced a variety of impacts, both in relation to the people they care for and in relation to their own health and overall wellbeing. Many carers provide care and support to people who are in higher risk categories, and many are in higher risk categories themselves due to age or an existing health condition. These factors have resulted in complexities surrounding provision of care, particularly in maintaining social distancing.  [...]

Carers NSW determined that it was crucial to hear directly from carers and other key stakeholders in order to gain a clear and accurate picture of the key issues, challenges and opportunities for carers during the pandemic. This report identifies the key findings of consultation conducted to inform Carers NSW service adjustments and systemic advocacy. 

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Coronavirus (COVID-19) and carers: Carers NSW Position statement, 7 May 2020

As the peak non-government organisation for carers in NSW, Carers NSW has been closely monitoring related policy developments that may directly impact carers and the people they care for, and has been in continual contact with carers across the state to understand and respond to their changing support needs. This position statement draws on ongoing policy and media analysis, more than 50 carer case studies, and 5 consultations held with 30 carers and other stakeholders.

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Covid-19 pandemic: 4.5 million become unpaid carers in a matter of weeks

New figures released for Carers Week (8th – 14th June 2020) show an estimated 4.5 million people in the UK have become unpaid carers as a result of the Covid-19 pandemic. This is on top of the 9.1 million unpaid carers who were already caring before the outbreak, bringing the total to 13.6 million.

2.7 million women (59%) and 1.8 million men (41%) have started caring for relatives who are older, disabled or living with a physical or mental illness. Typically, they will have been supporting loved ones from afar, helping with food shopping, collecting medicine, managing finances and providing reassurance and emotional support during the pandemic. Some will have taken on intense caring roles, helping with tasks such as personal care, moving around the home, administering medication and preparing meals.

2.8 million people (62%) who have started caring since the outbreak are also juggling paid work alongside their caring responsibilities, highlighting the need for working carers to be supported as they return to offices and work sites.

The six charities supporting Carers Week - Carers UK, Age UK, Carers Trust, Motor Neurone Disease Association, Oxfam GB and Rethink Mental Illness – are calling on the UK Government to recognise and raise awareness of the role unpaid carers are playing during the pandemic and ensure they are supported through it, and beyond.

Both unpaid carers (71%) and adults without caring responsibilities (70%) said managing the stress and responsibility of being an unpaid carer was/ would be the top challenge when caring. Families are under a huge amount of pressure managing their caring roles and are worried about how they will cope in the weeks and months ahead.

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Sleep Quality in Young Adult Informal Caregivers: Understanding Psychological and Biological Processes

Background: Providing informal care for a relative or friend with medical or mental needs can extol a physical burden on the caregiver, including impaired aspects of sleep quality such as suboptimal sleep duration, lengthened sleep latency, frequent awakenings, daytime sleepiness, and poor self-rated sleep quality. Diminished sleep quality can worsen the health in the caregiver, including dysregulation of hypothalamic-pituitary-adrenal axis (HPA) activity. Few studies have attempted to describe sleep in young adults who provide regular informal care. This study examines subjective and objective indicators of sleep quality and diurnal cortisol rhythms among young adult caregivers relative to non-caregiving peers. We expect that caregivers will exhibit poorer objective and subjective sleep quality and greater dysregulation in diurnal cortisol indices, than demographically similar non-caregivers, and that caregivers with poorer sleep will exhibit pronounced cortisol dysregulation.; Methods: Participant self-reported sleep quality over the prior month via the Pittsburgh Sleep Quality Index and objective sleep quality was observed via wrist actigraph for three consecutive days. Diurnal salivary cortisol was also measured across the three days of actigraph monitoring.; Results: Informal caregivers exhibited more self-reported sleep disturbance and greater sleep latency than non-caregivers, as well as more objectively measured sleep fragmentation. Caregivers with a shorter sleep duration were observed to have flatter diurnal cortisol slopes than caregivers with a relatively longer sleep duration.; Conclusions: Young adult caregivers appear to be at risk for impairment in sleep quality, which in turn might impact health through HPA axis dysregulation. Longitudinal research is needed to identify these relationships across time.

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Severity of military traumatic brain injury influences caregiver health-related quality of life

Purpose/objective: To examine the influence of traumatic brain injury (TBI) severity on the health-related quality of life of caregivers providing care to service members/veterans (SMV) following a TBI. Research Method/Design: Thirty caregivers (90.0% female; 70.0% spouse; age: M = 39.5 years, SD = 10.7) of SMVs who sustained a mild, moderate, severe, or penetrating TBI were recruited from Walter Reed National Military Medical Center and via community outreach to participate in one of six focus groups. Caregivers were classified into 3 TBI severity/caregiver groups: (a) moderate/severe/penetrating TBI caregiver group (n = 11); (b) mild TBI caregiver group (n = 10); and (c) equivocal TBI caregiver group (n = 9). Thematic analysis using a constant comparative approach was conducted with qualitative analysis software to identify common themes across the 3 severity/caregiver groups.; Results: Eleven themes emerged: no time for self/needs last (83.3%), poor physical health (80.0%), increased stress/anxiety (76.7%), social isolation/loneliness (66.7%), lack of access to services (50.0%), impact on family life (46.7%), sleep issues (46.7%), finances/employment (36.7%), depression (30.0%), exhaustion (30.0%), and anger (16.7%). Exploratory pairwise comparisons revealed a higher proportion of the moderate/severe/penetrating TBI group endorsed 7 of the 11 themes (no time for self/needs last, increased stress/anxiety, impact on family life, sleep issues, finances/employment, exhaustion, anger, and increased stress/anxiety) compared with the other 2 groups.; Conclusions/implications: It is important that caregivers of SMVs receive long-term support in their caregiving and parenting roles. Further work is required to understand the challenges caregivers experience in accessing services they need and how to effectively meet their needs across the care continuum.

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An Intervention to Improve Physical Function and Caregiver Perceptions in Family Caregivers of Persons With Heart Failure

Objective: This randomized controlled trial was conducted to determine whether a 12-week home-based aerobic and resistance exercise program would improve physical function and caregiving perceptions among family caregivers (FCGs) of persons with heart failure. Method: Overall, 127 FCGs were randomized to one of three groups: usual care attention control (UCAC), psychoeducation only (PE), and psychoeducation plus exercise (PE + EX). Physical function measures (6-min walk test, handgrip, and upper and lower strength) and caregiving perceptions (Bakas Caregiving Outcomes Scale) were obtained at baseline and at 6 months. Results: FCGs in the PE + EX showed significant improvement in 6-min walk distance (p = .012), handgrip, and lower extremity strength compared with the PE and UCAC groups. The combined group had the greatest improvement in caregiver perceptions (p < .001). Conclusion: FCGs in the PE + EX group improved the most in physical function and caregiver perception outcomes. Directions for future research are provided.

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Informal caregiving, chronic physical conditions, and physical multimorbidity in 48 low- and middle-income countries

Background: The health of the caregivers is crucial to sustain informal care provision, while multimorbidity is an important health risk concept. However, studies on the association between informal caregiving and physical multimorbidity are currently lacking. Therefore, we investigated this association in adults from 48 low- and middle-income countries (LMICs).; Methods: Cross-sectional data from 242,952 adults (mean age 38.4 years) participating in the World Health Survey 2002-2004 were analyzed. Informal caregivers were considered those who provided help in the past year to a relative or friend (adult or child) who has a long-term physical or mental illness or disability, or is getting old and weak. Nine physical conditions were assessed. Multivariable logistic regression analyses were conducted to assess associations between informal caregiving and physical multimorbidity, while the between-country heterogeneity in this relationship was studied with country-wise analyses.; Results: The overall prevalence of informal caregiving and physical multimorbidity (i.e, ≥2 physical conditions) was 19.2% and 13.2%, respectively. Overall, caregivers had 1.40 [95% confidence interval (CI)=1.29-1.52] times higher odds for physical multimorbidity. This association was particularly pronounced in younger caregivers [e.g., 18-44 years: odds ratio (OR)=1.54; 95%CI=1.37-1.72], while this association was not statistically significant among those aged ≥65 years (OR=1.19; 95%CI=0.98-1.44). Country-wise analyses corroborated these findings and there was a negligible level of between-country heterogeneity (I2=24.0%).; Conclusions: In LMICs, informal caregivers (especially young caregivers) were more likely to have physical multimorbidity. This should be taken into account in policies that address the health and wellbeing of informal caregivers.

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Family Caregiving for Older Adults

Family members are the primary source of support for older adults with chronic illness and disability. Thousands of published empirical studies and dozens of reviews have documented the psychological and physical health effects of caregiving, identified caregivers at risk for adverse outcomes, and evaluated a wide range of intervention strategies to support caregivers. Caregiving as chronic stress exposure is the conceptual driver for much of this research. We review and synthesize the literature on the impact of caregiving and intervention strategies for supporting caregivers. The impact of caregiving is highly variable, driven largely by the intensity of care provided and the suffering of the care recipient. The intervention literature is littered with many failures and some successes. Successful interventions address both the pragmatics of care and the emotional toll of caregiving. We conclude with both research and policy recommendations that address a national agenda for caregiving.

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The development of a family participatory dignity therapy programme for patients with haematologic neoplasms and their family caregivers in China: A feasibility study

Objective: To develop a communication prompt based on dignity therapy to facilitate effective conversations between patients with haematologic neoplasms and their family caregivers and to improve the programme and preliminarily explore the benefits and challenges of family participatory dignity therapy (FPDT).; Methods: A mixed-methods approach was applied to develop and revise the programme. The FPDT was developed and validated using the Delphi survey, and its further improvement was explored with a simple one-group pre- and post-trial and semi-structured in-depth interviews.; Results: Most of the FPDT items were endorsed by experts and patient-family dyads. The Content Validity Index was 93.6% in the first round of the Delphi survey and 100% in the second round. The "hope level," "spiritual well-being" and "general health" scores of pre- and post-testing increased from 33.60 ± 4.30 to 37.70 ± 5.10 (t = 3.99, p = .003); from 30.30 ± 3.65 to 38.80 ± 7.29(t = 4.13, p = .003); and from 41.67 ± 8.78 to 53.33 ± 8.05 (t = 3.50, p = .007) respectively. The qualitative data also indicated that the project was meaningful and well received.; Conclusions: We showed that FPDT was a valuable and feasible means of improving communication between patients with haematologic neoplasms and their family caregivers in China by raising the hope level and spiritual well-being and promoting general health.

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A cross-sectional study of family caregiver burden and psychological distress linked to frailty and functional dependency of a relative with advanced dementia

Psychological health of caregivers of people with dementia is a major public concern. This study sought to determine the relationship between caregiver burden, psychological distress, frailty and functional dependency of a relative with advanced dementia. Persons with dementia and their caregivers (102 dyads) participated in this Portuguese community based cross-sectional study. Data were collected using the Clinical Dementia Rating Scale, a sociodemographic questionnaire, the Zarit Burden Interview, the Brief Symptoms Inventory and the Edmonton Frail Scale. Alzheimer's disease was the most common type of dementia among the recipients of care, who showed moderate (42.2%) to severe (52.9%) dementia. Among them 35.3% exhibited moderate and 45.1% severe frailty. Family caregivers reported moderate (76.5%) to severe burden (18.6%). Psychological distress was very high among family caregivers. Results show that people with dementia exhibited moderate (35.3%) or severe frailty (45.1%) and that a severe frailty was found in people with moderate dementia. A one-way ANOVA was conducted between the Global Severity Index and some sociodemographic variables. ANOVA reached p <.01 for employment status of the caregiver, assistance and professional support, and psychiatric history; and p = 0.01 for caregiver age and years of caregiving. Although caregivers reported benefit from the supportive approach offered by the multidisciplinary home care team, high levels of distress and associated burden were found, which might decrease their capacity to care for the person with dementia and their own health and well-being.

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A Comparison of Diet Quality of Patients With Heart Failure and Their Family Caregivers

Background: Patients with heart failure (HF) and their family caregivers usually consume similar diets, but there is a lack of evidence about diet quality of patients with HF and their family caregivers.; Objective: The specific aim of this study was to compare diet quality of patients with HF with that of their family caregivers.; Methods: In this cross-sectional study, 40 patients with HF and their 40 family caregivers completed a VioScreen Food Frequency Questionnaire from which Healthy Eating Index-2010 (HEI) diet quality scores (consisting of the total HEI score and 12 component scores) were calculated.; Results: None of the 40 patient-caregiver dyads had a high diet quality score (ie, total HEI > 80), whereas 21% of participants had poor diet scores (ie, total HEI ≤ 50). There were no differences in total HEI scores (58.5 vs 59.4, P = .58) or the 12 component scores of the HEI within dyad members. Mean scores of 6 of the 12 components (ie, total fruit, greens and beans, total protein foods, seafood and plant proteins, fatty acids, empty calories) for both members of the HF dyad were lower than the national average. Interestingly, scores for the sodium component were similarly low in patients and caregivers (4.1 vs 3.4, P = .24), indicating high sodium intake.; Conclusion: Both patients and caregivers consume poor-quality diets that are high in sodium. These findings suggest that nutrition interventions to improve diet quality for patients with HF need to be targeted at the family as a unit.

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Association between sleep, care burden, and related factors among family caregivers at home

Aim: Several studies have reported a negative correlation between depressive symptoms and family caregivers' (FCs) subjective sleep status. However, there is a paucity of information on the association between objective/subjective sleep status, care burden, and related factors.; Methods: Participants were 23 pairs of care receivers (CRs; Mage = 82.7 ± 8.5 years; 69.6% women) receiving long-term care at home and their FCs (Mage = 66.9 ± 11.0 years; 69.6% women). At baseline, demographic data, subjective sleep status (Pittsburgh Sleep Quality Index; PSQI), WHO-5 well-being, depressive mood, and frequency of going outdoors were collected. FCs wore a small, wrist-worn device with an accelerometer to assess objective sleep status for a consecutive 24-h 2-week period, and they answered the Zarit Burden Interview short version (ZBI) every night before sleep. After 3 months, CR status was collected and analysed retrospectively.; Results: The mean total sleep time over 2 weeks was 349.5 ± 69.6 min. The mean ZBI score over 2 weeks was 8.8 ± 6.8, which was significantly correlated with total sleep time (r = -0.42; P < 0.05), total time in bed (r = -0.44; P < 0.05), PSQI (r = 0.62; P < 0.01), frequency of going outdoors by CRs (r = -0.42; P < 0.05), and WHO-5 well-being among CRs (r = -0.50; P < 0.05). Multiple regression analyses revealed that total sleep time (β = -0.51; P < 0.05) was significantly associated with care burden (adjusted R2 = 0.45). At the 3-month follow-up, four CRs had been hospitalised or died, and their FCs displayed significantly severe care burden and slept less than at baseline.; Conclusions: Reduced objective total sleep time is significantly associated with the severity of care burden among FCs. Home-based care is critical in Japan; therefore, it is meaningful to determine how to reduce care burden.

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Effectiveness of health web-based and mobile app-based interventions designed to improve informal caregiver's well-being and quality of life: A systematic review

Background: Internet-based interventions can help empower caregivers of people with chronic diseases and can develop solutions to decrease the physical and psychological consequences resulting from caregiving. Objective: Analysing the effectiveness of health web-based and/or mobile app-based interventions with regard to the level of well-being and quality of life of informal caregivers in charge of people with chronic diseases. Materials and methods: Systematic review of the following databases: Pubmed, Apa PsycINFO, ProQuest Health & Medical Complete and Scopus. Quality standards established by PRISMA and Joanna Briggs Institute Systematic Review Approach have been followed. The two phases of the selection process were carried out independently and a cross-case comparative analysis by three reviewers. Results: A total of 17 studies met inclusion criteria. The analysis shows that almost all studies involved web-based interventions with the exception of one which concerned a mobile app-based intervention. Most of them prove their effectiveness in the overall well-being of the caregiver and more specifically in the mental dimension, highlighting a decrease in caregivers’ anxiety and/or distress, depression symptoms and sense of competence. Conclusions: The findings support that web-based interventions have an impact mainly on caregivers’ well-being. Nevertheless, other dimensions that are necessary for caregiving, such as physical, mental and social dimension, have been scarcely explored. More studies on mobile app-based interventions are needed to know their effectiveness. 

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When Distress Becomes Somatic: Dementia Family Caregivers' Distress and Genetic Vulnerability to Pain and Sleep Problems

Background and Objectives Stress can trigger physical pain and disturb sleep. Whether dementia family caregivers experience heightened pain is unknown. Cycles of unwanted thoughts about caregiving stressors and avoidance of these thoughts—that is, caregiving-related distress—may exacerbate both pain and sleep disturbances, and genetic susceptibility to stress may further modulate these associations. Research Design and Methods Dementia caregivers (72 spouses, 58 adult children, ages 34–89) rated the extent to which they experienced unintended thoughts about caregiving and tried to suppress such thoughts. They also reported their pain levels, sleep problems, and depressive symptoms. Peripheral blood leukocytes were genotyped for 5-HTTLPR (serotonin-transporter-linked polymorphic region) and 5-HT1A receptor polymorphism rs6295 on the 5HTR1A locus. Results Short-allele carriers for 5-HTTLPR experienced more pain and sleep problems in association with greater caregiving-related distress than those with other genotypes. For rs6295, C carriers also showed the strongest links between distress and sleep problems. Those who experienced more avoidance and intrusive thoughts about caregiving had more severe depressive symptoms, consistent with past work. Discussion and Implications Caregivers' genetic profiles helped to explain whether caregiving-related distress predicted worse pain and sleep problems. These data reveal new somatic risks of caregiver distress and provide targets for intervention. According to plasticity theories, caregivers genetically predisposed to greater stress reactivity may also respond particularly well to interventions, and many brief treatments may effectively address caregivers' intrusions and avoidance. 

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A validation study of the ICECAP-O in informal carers of people with dementia from eight European Countries

Purpose: The pressure on healthcare budgets remains high, partially due to the ageing population. Economic evaluation can be a helpful tool to inform resource allocation in publicly financed systems. Such evaluations frequently use health-related outcome measures. However, in areas such as care of older people, improving health outcomes is not necessarily the main focus of care interventions and broader outcome measures, including outcomes for those providing informal care, may be preferred when evaluating such interventions. This paper validates a recently introduced well-being measure, the ICECAP-O, in a population of informal carers for people with dementia from eight European countries.; Methods: Convergent and discriminant validity tests were performed to validate the ICECAP-O using data obtained in a sample of 451 respondents from Germany, Ireland, Italy, the Netherlands, Norway, Portugal, Sweden and the UK. These respondents completed a number of standardized questionnaires within the framework of the Actifcare project.; Results: The ICECAP-O performed well among informal carers, in terms of both convergent and discriminant validity. In the multivariate analysis, it was found to be significantly associated with the age of the person with dementia, EQ-5D-5L health problem index of the person with dementia, carer-patient relationship, care recipient CDR, carer LSNS Score, the PAI score, and Perseverance Time.; Conclusion: The ICECAP-O appears to be a valid measure of well-being in informal carers for people with dementia. The ICECAP-O may therefore be useful as an outcome measure in economic evaluations of interventions aimed at such informal carers, when these aim to improve well-being beyond health.

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Social Participation and Health Outcomes Among Caregivers and Noncaregivers in Great Britain

This study investigates the relationship between social participation and health outcomes between caregivers and noncaregivers in Great Britain. Previous studies indicate that the impact of informal caregiving on the carer's health is complex, and the intensity of care provision has an adverse impact on the caregivers' health, while social participation could have a protective role in this respect. Using qualitative and quantitative data from Wave 8 of the 1958 National Child Development Study, the analysis shows that social participation has a positive effect on the carers' mental health and subjective well-being. Individuals who did not engage in social participation reported lower levels of mental health and control, autonomy, self-realization and pleasure (CASP) scores than those engaged in social participation. The qualitative results showed the barriers to social participation of caregivers to be time, energy, and finance. We discuss ways in which the government could address such barriers to improve the level of social participation among caregivers.

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Sleep Quality in Caregivers of Older Patients with Schizophrenia Spectrum and Bipolar Disorders: A Case-Control Study

Objectives: Prior literature has documented the global burden of serious mental illnesses. The present study aimed to compare the sleep quality in caregivers of older patients with schizophrenia spectrum and bipolar disorders with control participants who did not serve as caregivers. Methods: We performed a case-controlled, cross-sectional study among family caregivers of older patients with psychotic disorders in Razi Hospital, Tunisia. Subjective sleep quality was assessed using the Pittsburgh Sleep Quality Index Scale (PSQI). Results: Fifty caregivers of older patients (≥ 60 years) with schizophrenia spectrum and bipolar disorders, and 50 matched controls were enrolled. The three sub-dimensions of the PSQI, namely subjective sleep quality, sleep duration, and sleep efficiency, as well as overall PSQI scores, were worse for caregiver participants. Hierarchical multiple regression analyses predicting PSQI scores revealed that caregivers' age and marital status were the only significant predictors in the final model. Conclusions: Older adults with severe mental disorders constitute a vulnerable population which generates a significant burden of care, and impacts their caregivers' subjective sleep quality. Clinical Implications: Family interventions, including sleep interventions, should be considered as an integral component of treatment for serious mental illnesses. When promoting sleep quality, older and single caregivers should be targeted.

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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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Predictor Factors of Perceived Health in Family Caregivers of People Diagnosed with Mild or Moderate Alzheimer's Disease

Caring for a person diagnosed with Alzheimer's disease has a negative impact on family caregivers' psychological health. This study examined the factors related to 'perceived health' and 'presence of new-onset mental health problems' in family caregivers of people diagnosed with mild and moderate Alzheimer's disease. A cross-sectional observational study carried out in Almeria's Healthcare District (Spain). A total of 255 family caregivers (42.4% cared for people with mild Alzheimer's disease and 57.6% cared for people with moderate Alzheimer's disease) participated in the study from January to December 2015. Mainly, caregivers were women (81.5% in the mild Alzheimer's disease group and 88.4% in the moderate Alzheimer's disease group), and their average age was 56.54 years (standard deviation (SD) = 13.13) and 54.47 years (SD = 11.71), respectively. Around 47% of the caregivers had been caring for the person with Alzheimer's between two and five years. The Goldberg General Health Questionnaire was used to measure perceived health and the presence of new-onset mental health problems. An exploratory descriptive analysis and a multivariate logistic regression analysis were conducted. For caregivers of people with mild Alzheimer's disease, 'perceived health' was related to 'perceived social support' (r = -0.21; p = 0.028), 'person's level of dependency' (r = -0.24, p = 0.05), 'severity of the person's neuropsychiatric symptoms' (r = 0.22; p = 0.05), and 'caregiver's emotional distress in response to the person's neuropsychiatric symptoms' (r = 0.22; p = 0.05). For caregivers of people with moderate Alzheimer's disease, 'perceived health' was related to 'perceived social support' (r = -0.31; p ˂ 0.01), 'presence of neuropsychiatric symptoms' (r = 0.27, p = 0.01), 'severity of the person's neuropsychiatric symptoms' (r = 0.32, p = 0.01) and 'caregiver's emotional distress in response to the person's neuropsychiatric symptoms' (r = 0.029; p = 0.01). The presence of new-onset mental health problems was detected in 46.3% (n = 50) of caregivers of people with mild Alzheimer's and 61.9% (n = 91) of caregivers of people with moderate Alzheimer's. When people are diagnosed with mild Alzheimer's disease, intervention programs for caregivers should aim to regulate emotions and promote positive coping strategies. When people are diagnosed with moderate Alzheimer's disease, intervention programs for caregivers must allow them to adapt to caregiving demands that arise with the progression of Alzheimer's disease.

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Parkinson's Symptoms and Caregiver Burden and Mental Health: A Cross-Cultural Mediational Model

Informal caregivers are critical in the care of individuals with Parkinson's disease (PD) and spend substantial time providing care, which may be associated with negative caregiver outcomes such as burden and mental health issues. Although research in the United States and Europe has generally supported these relations, there is very limited research on PD caregiving in Latin America. The current study examined the following connections in a sample of PD caregivers from the United States (N=105) and Mexico (N=148): (a) PD-related impairments (motor and nonmotor symptoms) and caregiver burden, (b) caregiver burden and caregiver mental health, and (c) PD-related impairments and mental health through caregiver burden. Study results uncovered significant relations among PD-related impairments, caregiver burden, and caregiver mental health. Further, caregiver burden fully mediated the relation between PD-related impairments and caregiver mental health at both study sites. Findings highlight a number of important intervention targets for caregivers and families, including caregiver burden and mental health.

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The mediating effects of leisure engagement on relationships between caregiving stress and subjective wellbeing among family caregivers of persons with cognitive impairment: A cross-sectional study

Family caregivers of persons with cognitive impairment experience changes in reductions in leisure engagement, which can decrease their subjective wellbeing (leisure satisfaction, negative affect and positive affect). We recruited 100 dyads of patients with cognitive impairment and family caregivers by convenience sampling from outpatient memory clinics and daycare centers in northern Taiwan. Hierarchical regression analysis tested the mediating effects of leisure engagement on the relationship between caregiving stress and subjective wellbeing. Results indicated that the restorative experience of event/tourism activities (β = 0.23, p < .05) significantly mediated between caregiving stress and leisure satisfaction. In addition, the only significant mediator between caregiving stress and negative affect was leisure barriers (β = 0.21, p < .05). Both of the regression models explained 27% of the variance. Future development of leisure interventions should focus on reducing leisure barriers and providing event and tourism activities to the dyads. 

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Carers and Physical Activity Policy Briefing

This policy briefing is designed for professionals to share some initial insight from our work with Sport England. Further research on carers and inactivity including best practice examples and recommendations will be released in a report later in 2020.

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Longitudinal dyadic interdependence in psychological distress among Latinas with breast cancer and their caregivers

Purpose: Cancer diagnosis and treatment can generate substantial distress for both survivors and their family caregivers. The primary aim of this investigation is to test a model of dyadic interdependence in distress experienced by cancer survivors and their caregivers to determine if each influences the other.; Methods: To test this prediction, 209 Latinas with breast cancer and their family caregivers (dyads) were followed for 4 waves of assessment over the course of 6 months. Both psychological (depression, anxiety, perceived stress) and physical (number of symptoms, symptom distress) indicators of distress were assessed. Longitudinal analyses of dyadic data were performed in accordance with the actor-partner interdependence model.; Results: Findings indicated that psychological distress was interdependent between cancer survivors and their caregivers over the 6 months of observation. However, there was no such evidence of interdependence on indicators of physical distress.; Conclusions: These findings are consistent with emotional contagion processes and point to the potential importance of caregiver well-being for the welfare of Latina breast cancer survivors.

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A longitudinal analysis of mental and general health status of informal carers in Australia

Background: The study investigated the self-assessed mental and general health status of informal carers in Australia. It evaluated the influence of carer's health behaviours, namely physical activity, smoking and drinking status, along with their social connectedness and workforce engagement on their health status.; Methods: The study used a retrospective longitudinal design using data from the Household Income and Labour Dynamics of Australia survey, waves 5-15 (2005-2015). It included individuals aged 15 years and older from Australian households surveyed over a period of 11 years. The sample consisted of 23,251 individuals. The outcome measures included: mental health, general health and physical functioning domains of the Short Form 36 Questionnaire, a widely used multi-dimensional measure of health-related quality of life. Using fixed effects regression and following individuals over time, the analysis took care of the issue of individuals self-selecting themselves as carers due to some predisposing factors such as age, poor health, socioeconomic status and sedentary behaviour.; Results: There were statistically significant carer-noncarer status differences in mental (Beta = - 0.587, p = 0.003) and general health (Beta = - 0.670, p = 0.001) outcomes. Aging had a modifying impact on carers' mental and general health outcomes. Older carers coped better with their caregiving responsibilities than younger ones. Moreover, while physical activities had a positive influence on both mental and general health for non-carers, with more activities generating better health outcomes, it only had a modifying impact on carers' mental health. Furthermore, the study found that moderate levels of social drinking had beneficial modifying impact on carers' mental and general health.; Conclusion: This study added value to the literature on informal carers' mental and general health in Australia by identifying some of the protective and risk factors. The study found the modifying effects of carers' age, health behaviours such as physical activity, smoking and drinking status on their health. Finally, the study identified an apparent beneficial link between moderate levels of social drinking and carer health that needs to be further explored with more targeted future research.

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Is Family Caregiving Associated With Inflammation or Compromised Immunity? A Meta-Analysis

Background and Objectives Family caregiving stress has been widely reported to have negative effects on circulating biomarkers of immune system function and inflammation. Our goals were to systematically review this literature and conduct a meta-analysis on the extracted effects. Research Design and Methods A systematic search of published studies comparing caregivers and noncaregivers on biomarkers measured from blood samples was conducted in the PubMed, Embase, and Cochrane databases. This search identified 2,582 articles and abstracts. After removing duplicative papers and studies not meeting inclusion criteria, 30 articles were identified that reported analyses on 86 relevant biomarkers from 1,848 caregivers and 3,640 noncaregivers. Results Random-effects models revealed an overall effect size across all biomarkers of 0.164 SD units (d). A slightly larger overall effect (d = 0.188) was found for dementia caregivers only. Immune system comparisons yielded somewhat larger differences than inflammation comparisons. Most studies used small convenience samples, and effect sizes were larger for studies with moderate or high bias ratings than for studies with low bias ratings. No significant associations were found in studies that used population-based samples. Discussion and Implications Caregivers had small but significantly reduced immune system functioning and greater inflammation than noncaregivers, but associations were generally weak and of questionable clinical significance. The absence of clear associations from low bias studies and population-based studies underscores concerns with possible selection biases in many of the convenience samples. Population-based studies that assess biomarkers before and after the onset of caregiving might add much clarity to this literature. 

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Informal care. European situation and approximation of a reality

Introduction: In European countries, the increasing of dependency affects individual, family-level and political aspects. The purpose is to analyse the effects on the health of informal carers living with a dependent person and the number of hours taken up by this care. Results between genders will be compared with other situations (time, energy commitments, influential socio-economic factors and differences among countries).; Materials/methods: This research is a cross-sectional study analysing secondary data and is carried out as part of the European Social Survey (ESS), 2014/2015. A total of 32,992 participants aged over 25 years took part in the ESS. Using an empirical framework, we have selected a simple logit model (logit) and a logit model with a multilevel structure ranking by country of residence (Xtmelogit).; Results: Being a carer is associated with a decrease in health indicators. Moreover, being a woman is related to an intense load of hours of care, no level of studies and living with difficulties. Living in southern or eastern European countries can also be considered a risk factor for carers. There are also important north-south political differences.; Political Implications: These results show the need to apply gender policies to reconcile and regulate the distribution of the income of economically more vulnerable families, as well as the provision of social services to help dependents.

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Implementation and feasibility considerations of an avatar-based intervention for military family caregivers

Objective: Military family caregivers (MFCGs) are a growing population with well-being and quality of life (QOL) challenges. New technologies can help meet their needs while minimizing disruption to caregiving responsibilities. Preliminary research needs to address intervention implementation challenges before larger-scale efficacy studies are conducted. This study aimed to evaluate the feasibility of implementing an avatar-based intervention and preliminarily investigate outcomes.; Methods: One-hundred twenty-four MFCGs were recruited to participate in this feasibility study. Sixty-four MFCGs completed the intervention. Data were analyzed using repeated-measures analysis of variance to assess 3- and 6-month differences.; Results: Meeting the a priori goal of 50 MFCGs completing the program supported feasibility. Preliminary results indicated significant reductions in depression, anxiety, and somatic symptoms, and significant improvements in physical health and overall QOL.; Conclusions: Findings support for the feasibility of implementing an avatar-based intervention for MFCGs and present promising findings related to improving caregiver well-being and overall QOL.

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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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Health, well-being, and social support in older Australian lesbian and gay care-givers

Informal care-givers play an important role in society, and many of the people who provide this care are lesbian women and gay men. Being a care-giver is known to be associated with poorer health and well-being, and lesbian and gay care-givers report experiences of stigma and discrimination in the care-giving context. This study involved a survey of 230 lesbian women and 503 gay men aged 60 years and over living in Australia, of which 218 were care-givers. We compared care-givers to non-caregivers on a range of health and well-being measures, including psychological distress, positive mental health, physical health and social support. While we found no significant differences between these two groups, we further compared care-givers who were caring for an LGBTI person to those who were caring for a non-LGBTI person. Among the lesbian women, care-givers of an LGBTI person reported feeling less supported in their carer role and reported lower levels of social support more generally. They were also lower on positive mental health and physical health indicators. Among the gay men, care-givers of an LGBTI person also reported feeling less supported in their carer role, but there were no differences in reported levels of social support more generally or health and well-being compared to those caring for a non-LGBTI person. Overall, results from this study suggest that older lesbian and gay care-givers may be facing some challenges related to their well-being and feeling supported, especially if they are caring for another LGBTI person.

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The emotional and mental health needs of young carers: what psychiatry can do

Aims and Method: To review the literature on the emotional and mental health needs of young carers of parents with mental illness and the extent to which such needs are recognised and supported by professionals. Three databases were systematically searched from 2008 to 2018, and five studies met the inclusion criteria.; Results: The key findings were that young caregivers had a significantly higher dose-response mortality risk than their peers; were at increased risk of mental health difficulties, especially where the ill family member was a parent and had mental illness or misused substances; were overlooked by professionals owing to a lack of awareness; but could derive benefits from their caring role when appropriately supported.; Clinical Implications: Young carers are at increased risk regarding emotional and mental health needs; this risk could be mitigated by professionals recognising the young carer's role and including them in their parent's treatment plan.

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Effectiveness of Resilience Education in the Mental Health of Family Caregivers of Elderly Patients with Alzheimer's Disease

Background: Continuing care of an elderly patient with Alzheimer's disease may result in psychosocial and physical disorders in family caregivers, as well as limitations to providing complete care. Objectives: The aim of the present study was to determine the effectiveness of resilience education in the mental health of family caregivers of elderly patients with Alzheimer's disease. Methods: This study followed a randomized, clinical trial design. The study population consisted of family caregivers of elderly patients with Alzheimer's disease who referred to hospitals and neurologists' offices located in the western cities of Mazandaran province, Iran. Data were collected between 2016 and 2017. Fifty-four family caregivers were recruited through convenience sampling and randomized into control and intervention groups (27 in each group). Demographic characteristics, Connor-Davidson Resilience Scale, and General Health Questionnaire were used for data collection. Resilience education was provided in eight sessions (45 min each) using PowerPoint presentations and educational pamphlets. The mental health scores were calculated using the indices including normality tests and analyzed using the independent and paired t-tests, analysis of variance (ANOVA), and Bonferroni test. Results: An independent t-test showed improvements in the mental health status of those who received the educational intervention (mean difference: 23.8±6.4; P < 0.001). The independent t-test also indicated statistically significant differences between the groups' anxiety/insomnia (8.8±2.3 versus -0.12±2.5), somatic symptoms (7.2±2.2 versus -0.9±1.03), social dysfunction (4.5±2.9 versus 0.2±1.3), and depression (3.2±2.2 versus -0.08±0.6; P < 0.001). Conclusions: Resilience education successfully improved the mental health of family caregivers. Therefore, it is suggested that healthcare providers, Alzheimer's associations, andNGOsprovide educational interventions to help promote the caregivers' mental health. 

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Effect of caregiving at end of life on grief, quality of life and general health: A prospective, longitudinal, comparative study

Background: Determining the effect of caregiving and bereavement remains a challenge. To date, no study has employed a comparison group to investigate caregivers' grief, quality of life and general health in relation to non-caregivers.; Aim: We aimed to determine how caregivers' grief, quality of life and general health changed following death compared to non-caregivers and whether pre-death grief predicted these outcomes.; Design: A prospective, longitudinal study of family caregivers and a comparison group matched for age, gender and postcode was conducted. All participants completed questionnaires at four points - once pre-death and three times post-death (3-4 months, 6-7 months and 9-10 months).; Setting/participants: Participants (N = 70) were family caregivers of persons receiving palliative care, mostly for cancer, recruited from three palliative care providers in Western Australia and matched comparisons recruited from advertisements.; Results: There were significant differences between the caregivers' and comparisons' grief, general health and quality of life at pre-death, 3-4 months and 6-7 months post-death, but not at 9-10 months post-death. The rate of progression in these constructs following death was independent from the intensity of pre-death grief. However, caregiver prolonged grief score significantly predicted prolonged grief score at 6-7 and 9-10 months post-death.; Conclusion: It took 9-10 months for the caregivers' grief, general health and quality of life to correspond to the comparison group. These findings present an opportunity for palliative care research and practice to consider how best to support the majority of caregivers without grief complications so that their pre- and post-death support needs are realised.

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Development of a dyadic sleep intervention for Alzheimer's disease patients and their caregivers

Purpose: This study aimed to refine a behavioral sleep intervention program targeting patients with Alzheimer's disease and their caregivers. Methods: In this case series, key components of the sleep program were built upon previous intervention studies of patients with cognitive impairment/dementia. The intervention consisted of five weekly sessions covering sleep hygiene, sleep compression, stimulus control, daily walking/light exposure, relaxation/mindfulness, and caregiver training to manage patients' behavioral problems. The materials and structure were iteratively refined based on feedback from caregivers and sleep educators. Sleep diaries were used to evaluate sleep outcomes. Results: Five out of six enrolled dyads completed the sessions. Several revisions were made during testing: the last session was changed from telephone to in-person; some components (e.g., sleep scheduling, mindfulness) were rearranged within or across sessions; sleep educator guidelines for sleep scheduling, light exposure, and walking were revised. After the fifth dyad, no additional issues were identified by the caregiver or the sleep educator. Four patients and three caregivers had improved sleep at the last session. Conclusions: The iterative refinement process was successful in finalizing the intervention program, with evidence of sleep improvements. Formal pilot testing of the program will provide further information on feasibility and effectiveness. IMPLICATIONS FOR REHABILITATION Our dyadic behavioral sleep program can be tailored to various types of sleep problems among patients with Alzheimer's disease and their family caregivers, with the goal of improving daytime function by reducing sleep disturbances at night. Caregiver training and participation of both members of the dyad in sleep management may benefit the patients' sleep and other health outcomes, reduce caregiver stress and burden, and ultimately delay or prevent institutionalization of Alzheimer's disease patients.

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Caregivers Benefit from Massage: More Isn't Necessarily Better--Some Is Enough!

The article offers information related to informal caregivers who provide unpaid, informal care for family members or friends with temporary or permanent conditions. It mentions increasingly, massage-related research examining massage benefits for admitted patients or patient populations and also mentions the results of standardized assessment scales that used to collect data for analysis research.

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65 The Health and Well-Being of Family Carers of Older People: An Exploratory Cross-Sectional Analysis

Background Family carers are critical to supporting older people to live well in their homes and demand for care at home is projected to increase dramatically into the future. The Irish state and health system, therefore, are dependent upon the supply of family care now and into the future. The health and well-being of older family carers, and carers providing care to older people in the community, is under-researched. Methods A combination of online and postal survey distribution achieved a convenience sample (N=1102) of carers from the membership and network reach of Ireland's largest family carer support and advocacy agency. Results Of those carers providing care to an older adult (n=341), 30% were aged over 64 and 28% reported mild to moderate carer burden. A further 36% reported moderate to severe burden. The average Zarit burden score for carers caring for an older adult was 44 (CI 42:45) and was 39 (CI 36:43) for family carers aged over 64. Among family carers of older adults, 72% reported diagnosis or treatment for physical illness and 42% reported diagnosis or treatment for mental illness. The most frequently cited source of worry for this group was their own health and wellbeing (73%) followed by lack of appropriate supports/services (68%). GPs were the most frequently cited source of support (64%) followed by a PHN (50%). Conclusion The study findings indicate that the lack of appropriate state supports and services for family carers is negatively impacting carer health and well-being. Family carers, including those providing care to older people and those who are themselves aged over 64, need to be consistently identified for intervention by health professionals, particularly GPs and PHNs. 

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Caring for Alzheimer’s disease caregivers: A qualitative study investigating opportunities for exergame innovation

The number of informal caregivers for family members with Alzheimer’s Disease (AD) is rising dramatically in the United States. AD caregivers disproportionately experience numerous health problems and are often isolated with little support. An active lifestyle can help prevent and mitigate physical and psychological health concerns amongst AD caregivers. Research has demonstrated how pervasive exergames can encourage physical activity (PA) in the general population, yet little work has explored how these tools can address the significant PA barriers that AD caregivers face. To identify opportunities for design, we conducted semi-structured interviews and participatory design sessions with 14 informal caregivers of family members with AD. Our findings characterize how becoming an AD caregiver profoundly impacts one’s ability to be active, perspectives on being active, and the ways that exergames might best support this population. We discuss implications for design and how our findings challenge existing technological approaches to PA promotion. 

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Assessing the Role of Selection Bias in the Protective Relationship Between Caregiving and Mortality

Caregivers have lower mortality rates than noncaregivers in population-based studies, which contradicts the caregiver-stress model and raises speculation about selection bias influencing these findings. We examined possible selection bias due to 1) sampling decisions and 2) selective participation among women (baseline mean age = 79 years) in the Caregiver-Study of Osteoporotic Fractures (Caregiver-SOF) (1999-2009), an ancillary study to the Study of Osteoporotic Fractures (SOF). Caregiver-SOF includes 1,069 SOF participants (35% caregivers) from 4 US geographical areas (Baltimore, Maryland; Minneapolis, Minnesota; the Monongahela Valley, Pennsylvania; and Portland, Oregon). Participants were identified by screening all SOF participants for caregiver status (1997-1999; n = 4,036; 23% caregivers) and rescreening a subset of caregivers and noncaregivers matched on sociodemographic factors 1-2 years later. Adjusted hazard ratios related caregiving to 10-year mortality in all women initially screened, subsamples representing key points in constructing Caregiver-SOF, and Caregiver-SOF. Caregivers had better functioning than noncaregivers at each screening. The association between caregiving and mortality among women invited to participate in Caregiver-SOF (41% died; adjusted hazard ratio (aHR) = 0.73, 95% confidence interval (CI): 0.61, 0.88) was slightly more protective than that in all initially screened women (37% died; aHR = 0.83, 95% CI: 0.73, 0.95), indicating little evidence of selection bias due to sampling decisions, and was similar to that in Caregiver-SOF (39% died; aHR = 0.71, 95% CI: 0.57, 0.89), indicating no participation bias. These results add to a body of evidence that informal caregiving may impart health benefits. 

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Thiamine deficiency observed in a cancer patient's caregiver

Objective Thiamine deficiency (TD) is recognized in various kinds of disease with associated loss of appetite including cancer; however, TD has not been recognized in the family caregivers of cancer patients to date. Method From a series of cancer patient caregivers, we reported an aged family caregiver who developed TD while caring for the cancer patient. Result The caregiver was a 90-year-old male. He had been accompanying his wife, who was diagnosed with colon cancer 4 years previously, on hospital visits as the primary caregiver, but because of psychological issues, he was recommended to visit the psycho-oncology department's “caregiver's clinic” for a consultation. Detailed examination revealed that his appetite had been only about 50% of usual from about one year before, and he had lost 12 kg in weight in one year. The diagnosis of TD was supported by his abnormally low serum thiamine level. Significance of the results This report demonstrates that there is a possibility that care providers could develop TD from the burdens associated with caregiving. TD should be considered whenever there is a loss of appetite lasting for more than 2 weeks, and medical staff should pay careful attention to the physical condition of care providers to prevent complications resulting from TD.

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Employment adjustment and mental health of employed family caregivers in Canada

Family caregivers make employment adjustment to fulfill caregiving responsibility. However, the studies on the family caregivers' mental health outcomes associated with their employment adjustment are limited. This study utilized the role theory and stress process model of caregiving to examine the relationship between employment adjustment and mental health outcomes among family caregivers, and to test family-to-work role conflict as a mediator and workplace support as a moderator in this relationship. Data (n = 1,696) were drawn from the 2012 Canada General Social Survey: Caregiving and Care Receiving. Findings suggest that employment adjustment is significantly associated with negative mental health outcomes including worse self-rated mental health and higher life stress level. In addition, family-to-work role conflict mediates between employment adjustment and mental health outcomes, with the mediating effect as significant at all levels of workplace support and as weak with increasing workplace support. The findings highlight the role of family-to-work role conflict in understanding the influence of employment adjustment on family caregiver's mental health, and the implication of workplace support on promoting caregiver-friendly workplace culture to alleviate family-to-work role conflict thereby resulting in better mental health outcomes.

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Informal Caregiver Burnout? Development of a Theoretical Framework to Understand the Impact of Caregiving

Informal caregiving is a rewarding but demanding role. The present theoretical framework proposes to adapt the tridimensional concept of burnout to informal caregiving as a way to address the potential consequences of caregiving. This adaptation reflects caregivers' reported difficulties, as well as empirical findings on emotional exhaustion, depersonalization, and personal accomplishment as caregiving outcomes. But to understand burnout in informal caregiving contexts, it is also necessary to find ways to model it. The Informal Caregiving Integrative Model (ICIM) is thus proposed. This model is based on the integration of elements from literature on both informal caregiving stress and professional burnout. The goal of the ICIM is to emphasize the importance of every category of determinants of informal caregiver burnout (i.e., relating to the caregiver, the caregiving setting, and the sociocultural context), with a key mediating role for the caregivers' appraisal of their situation and their relationship with the care-recipient. This article is a first integrative step in the consideration of a form of burnout specific to informal caregivers and supports the design of empirical and interventional studies based on the theoretical foundation that the ICIM proposes.

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Health coaching to improve self-care of informal caregivers of adults with chronic heart failure – iCare4Me: Study protocol for a randomized controlled trial

Background: Persons with chronic heart failure are living longer. These patients typically live in the community and are cared for at home by informal caregivers. These caregivers are an understudied and stressed group. Methods: We are conducting a two-arm, randomized controlled trial of 250 caregivers of persons with chronic heart failure to evaluate the efficacy of a health coaching intervention. A consecutive sample of participants is being enrolled from both clinic and hospital settings at a single institution affiliated with a large medical center in the northeastern US. Both the intervention and control groups receive tablets programmed to provide standardized health information. In addition, the intervention group receives 10 live coaching sessions delivered virtually by health coaches using the tablets. The intervention is evaluated at 6-months, with self-care as the primary outcome. Cost-effectiveness of the intervention is evaluated at 12-months. We are also enrolling heart failure patients (dyads) whenever possible to explore the effect of caregiver outcomes (self-care, stress, coping, health status) on heart failure patient outcomes (number of hospitalizations and days in the hospital) at 12-months. Discussion: We expect the proposed study to require 5 years for completion. If shown to be efficacious and cost-effective, our virtual health coaching intervention can easily be scaled to. support millions of caregivers worldwide.

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Family caregivers for cancer patients

Non formal, especially family caregivers are the most vital support for cancer patients in their healing process. However, caregivers are the least known, informed, and researched of all groups of people surrounding cancer patients. Ten family members are individually interviewed on their phenomenal experience in caring for cancer patients. Common themes that emerged from the interviews include financial, social emotions, and physical challenges. Financial problems rooted from unemployment as caregivers have to spent time looking after their sick family members. Social emotional problems included perception from society on their unemployment and family relationship issues. Caregivers also experienced physical strains as they put aside their well being in caring for others. However, caregivers have their own coping skills which included positive outlook and family support. Understanding of caregivers experiences is important for mental health professionals, medical team attending to the patients, and the public at large. Results of this study suggests further assistance and guidance for caregivers in carrying their responsibilities.

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Correlates of social support on report of probable common mental disorders in Zimbabwean informal caregivers of patients with stroke: A cross-sectional survey

Objective: Stroke is a major global public health burden. Unfortunately, stroke invariably leads to functional limitations, consequently, most stroke survivors are hugely dependent on family members/informal caregivers in carrying out essential daily activities. The increased demands of caregiving negatively impact caregivers' mental health. Nevertheless, caregivers who receive an adequate amount of social support are likely to adjust better to the caregiving role. We sought to determine the impact of social support on the mental wellbeing of 71 caregivers of patients with stroke in Zimbabwe, a low-resourced country. Results: The mean caregiver age was 41.5 (SD 13.8) years. Patients had a mean age of 65.2 (SD 15.3) years with most being functionally dependent (93.2%). 45.1% of the caregivers showed excessive psychiatric morbidity. The mean Multidimensional Scale of Perceived Social Support (MSPSS) score was 44 (SD 9.4), denoting high levels of social support. Caregivers who received an adequate amount of social support were likely to report of lower psychiatric morbidity (Rho = - 0.285, p = 0.016). Furthermore, caregiver who were; poorer, were caring for more functionally-dependent patients, and did not receive additional assistance were likely to report of poor mental health functioning. There is therefore a strong need to implement context-specific caregivers wellness programs. 

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'What happens when I can no longer care?' Informal carers' concerns about facing their own illness or death: a qualitative focus group study

OBJECTIVES: Older informal carers play an increasingly important role in supporting others with long-term health conditions. This study aimed to explore in depth the perspectives of older carers (70+ years) supporting others with a variety of conditions and disabilities focusing on their thoughts and experiences about when they are unable to continue caring. DESIGN: Qualitative with four focus groups. SETTING: Greater London, UK. PARTICIPANTS: 28 older carers (70+ years) recruited from the voluntary sector participated in this study. Most were women and many were spouses caring for partners with age-related conditions such as dementia, arthritis and visual impairment. Nearly a third were parents of adult children with severe physical or cognitive disabilities. FINDINGS: Thematic analysis identified two main aspects for carers when contemplating the future-when they are unable to care in the short term or long term if they die or can no longer manage. Themes included the following: the impact of age, health conditions and relationships on future planning; anxiety about future care; carers' ambivalence and challenges in broaching the subject; interventions that might help older carers talk about and plan for the future of those they care for. CONCLUSIONS: Services need to be open to talking about this difficult topic. Our findings suggest that frank discussions about when older carers cannot care and having plans in place, whether these are financial or address other practical issues, makes it easier for all concerned. However, this issue is not easily broached and its timing and ways to access this support must be carefully and individually gauged. Future research with more diverse demographic groups is needed to improve understanding of these carers' perspectives. Research is also needed to develop interventions to support older carers to talk about and plan for the future.

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Understanding the psychosocial impact of oral cancer on the family caregivers and their coping up mechanism: A qualitative study in Rural Wardha, Central India

A family caregiver is the one who provides care to their near and dear one who is suffering from some debilitating disease like oral cancer. Apart from providing physical care, they also provide emotional and financial support to their close relatives. They can be the patient's spouse, children, and siblings. This study was, hence, designed to understand the psychosocial impact of caregivers of oral cancer patients. Methodology: This was a qualitative study using in-depth interviews of 24 purposively chosen family caregivers irrespective of age, sex, and relationship with patients, who provided deep insight into the psychosocial impact of the disease on themselves during caregiving of their loved ones and how they coped with it. Interviews were taken in Hindi, in the houses of caregivers. Care was taken to maintain utmost privacy while taking the interviews, which were either audio recorded or noted down. Informed written consent was obtained from participants before the start of the study. Themes were evolved from the interviews and content analysis was performed using ATLAS.ti. Results: Six themes emerged after data analysis. Those were the impact on physical health and lifestyle, emotional impact, impact on family and social relationship, impact on financial and work status, improvement of hospital services, spiritual concern, and acceptance of the disease. A concept map was made to provide a vivid explanation of how oral cancer caused these impacts on caregivers and their interrelationship. Conclusion: Caregiving is not an easy job. This study recommends extra care to be taken in preparing them for caregiving to the oral cancer patients with adequate knowledge of the disease process and its consequences along with counseling facilities in the hospital to address the different psychosocial needs of the patients. 

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Efficacy of a psychoeducational intervention in caregivers of people with intellectual disabilities: A randomized controlled trial (EDUCA-IV trial)

Background: People with intellectual disabilities (ID) are usually cared for by their own parents, families or informal caregivers. Caring for a person with ID can have a negative impact on caregivers' mental health (burden, depression, anxiety). The main aim of the EDUCA-IV trial was testing the efficacy of a psychoeducational intervention program (PIP) versus standard practice and to see whether the PIP intervention would reduce the caregiver's burden at post-intervention (4 months) and at follow-up (8 months). Method: This was a multi-centre randomised controlled trial including 194 caregivers (96 randomised to PIP, 98 to control condition). PIP intervention consists of 12 weekly group sessions. The control group received treatment as usual. Primary outcomes measured included the Zarit Burden Interview (ZBI). Secondary outcomes were caregivers' mental health (GHQ-28), anxiety (STAI) and depression (CES-D). Results: The decrease of ZBI scores was not significant at 4 months. There was significant decrease in the GHQ scores at 4 and 8 months. CES-D showed relevant results at follow-up. Intention to treat analyses showed similar results. Conclusions: The PIP intervention seems not to be effective reducing burden, but appears to have a positive result on general mental health. The program was well received and valued by caregivers. 

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Sleep Duration and Sleep Quality in Caregivers of Patients With Dementia: A Systematic Review and Meta-analysis

Importance: In the United States, 16 million family caregivers provide long-term care for patients with dementia. Although one's physical, mental, and cognitive health depends on sleep, many caregivers experience chronic stress, and stress is typically associated with worse sleep quantity and quality. Objective: To quantify the extent, nature, and treatability of sleep problems in dementia caregivers. Data Sources: PubMed and Scopus databases were systematically searched for articles published through June 2018 using the following keywords: caregiver or spouse or caretaker AND sleep or circadian AND dementia or Alzheimer. Backward citation tracking was performed, and corresponding authors were contacted for additional data to conduct meta-analyses and pooled analyses. Study Selection: Two reviewers independently screened 805 studies to identify those that reported sleep duration or sleep quality in caregivers of patients with dementia. Data Extraction and Synthesis: Following the PRISMA guidelines, 2 reviewers independently extracted data from all studies and conducted National Heart, Lung, and Blood Institute study quality assessments. Meta-analyses with random-effects models were performed to evaluate sleep duration, sleep quality, and sleep interventions in dementia caregivers. Main Outcomes and Measures: Sleep quality and total sleep time were measured by polysomnography, actigraphy, and self-report. Results: Thirty-five studies were analyzed with data from 3268 caregivers (pooled mean age [SD of sample means], 63.48 [5.99] years; 76.7% female) were analyzed. Relative to age-matched control noncaregiver adults, caregivers had lower sleep durations akin to losing 2.42 to 3.50 hours each week (Hedges g = -0.29; 95% CI, -0.48 to -0.09; P = .01). Sleep quality was significantly lower in caregivers (Hedges g = -0.66; 95% CI, -0.89 to -0.42; P < .001), but caregivers who underwent sleep intervention trials had better sleep quality than caregivers who did not receive a sleep intervention (Hedges g = 0.35; 95% CI, 0.20-0.49; P < .001). Conclusions and Relevance: Sleep debt is known to have cumulative associations with physical, mental, and cognitive health; therefore, poor sleep quality in dementia caregivers should be recognized and addressed. Although the caregiving role is stressful and cognitively demanding by its nature, better sleep quality was observed in caregivers who received low-cost behavioral interventions.

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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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Carers at breaking point: Making the case for carers' breaks in England

This report shows the that majority of unpaid carers are unable to take sufficient breaks and also highlights an unfair and unequal provision of carers’ breaks services across England. The report is based on the results of a survey of over 1,000 carers in the UK and a freedom of information request to local authorities and clinical commissioning groups across England. Only 8 per cent of carers responding to the survey felt they had been able to take sufficient breaks. Almost half of respondents said they had not been able to take breaks even if they would have liked to, with 38 per cent f those not being able to afford replacement care. Carers who hadn’t taken a break from caring within the last year were also more likely to report that their mental or physical health had suffered as a result of caring. The Freedom of Information request also found wide variation in the amount of money local authorities and clinical commissioning groups are spending on carers’ breaks through the dedicated Better Care Fund. The report makes recommendations to improve access to breaks for carers, including increased funding for carers’ breaks through the Better Care Fund and for local authorities to make breaks a key part of their preventative work. 

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Caregiving Status and Health of Heterosexual, Sexual Minority, and Transgender Adults: Results From Select U.S. Regions in the Behavioral Risk Factor Surveillance System 2015 and 2016

Background and Objectives Insufficient research attention has been paid to the diversity of informal caregivers, including sexual and gender minority caregivers. This study examined health effects of caregiving separately from sexual orientation or gender identity status, while stratifying by gender among cisgender adults. We hypothesized that compared with heterosexual cisgender noncaregivers, heterosexual caregivers and lesbian/gay/bisexual (LGB), and transgender (T) noncaregivers would report poorer health outcomes (i.e., self-reported health, and poor mental health days and poor physical health days), and LGBT caregivers would report the worst health outcomes. Research Design and Methods This is a secondary data analysis of the 2015 and 2016 Behavioral Risk Factor Surveillance System data from 19 U.S. states. Results After adjusting for covariates and stratifying by gender among the cisgender sample, heterosexual caregivers, LGB noncaregivers and LGB caregivers had significantly higher odds of self-reported fair or poor health (adjusted odds ratios [aORs] 1.3–2.0 for women and 1.2 for men), poor physical health days (aORs 1.2–2.8 for women and 1.3–2.8 for men), and poor mental health days (aORs 1.4–4.7 for women and 1.5–5.6 for men) compared with heterosexual noncaregivers (reference group). By contrast, transgender caregivers did not have significantly poorer health than cisgender noncaregivers. Discussion and Implications LGB caregivers reported the worst health compared with other groups on multiple measures, signifying they are an at-risk population. These results suggest the necessity to develop LGB appropriate services and programs to prevent poor health in LGB caregivers. Existing policies should also be inclusive of LGBT individuals who are caregivers.

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A survey of the prevalence of modifiable health risk behaviours among carers of people with a mental illness

Background: Family carers provide significant support to people with a mental illness; yet may experience poor mental and physical health themselves. Among limited research addressing the physical health of carers, studies of carers of people with dementia and young people with psychosis suggest increased risk of chronic diseases in conjunction with higher levels of potentially modifiable lifestyle risk behaviours. This exploratory study, conducted with carers of people with various mental illnesses, aimed to determine: carer prevalence of health risk behaviours (inadequate fruit and vegetable consumption, inadequate physical activity, harmful alcohol consumption, and tobacco smoking); interest in changing 'at risk' behaviours; and potential associations of socio-demographic characteristics with risk status and interest in change. Methods: A cross-sectional survey was conducted among family carers of people with a mental illness (N = 144) residing in New South Wales, Australia. Analyses explored risk behaviour prevalence and interest in change, and associations with socio-demographic variables. Results: Inadequate fruit and vegetable consumption was most prevalent (74.8%), followed by engaging in inadequate amounts of physical activity (57.6%); harmful alcohol consumption (36.3%) and smoking (11.8%). The majority of carers were interested in improving 'at risk' behaviours (56.3-89.2%), with the exception of alcohol consumption (41.5%). Previously or never married participants were more likely to consume inadequate amounts of fruits and/or vegetables compared to those married or cohabiting (Odds Ratio [OR]: 4.1, 95% Confidence Interval [CI]: 1.3-12.9, p =.02). Carers in the workforce were more likely to be engaging in inadequate physical activity (OR: 2.6, 95% CI: 1.2-5.7, p =.02); and male participants were more likely to engage in harmful alcohol consumption (OR: 2.9, 95% CI: 1.1-7.9, p =.03). Working carers were approximately five times more likely to report interest in improving their alcohol consumption (OR: 5.1, 95% CI: 1.3-20.5, p =.02) compared to those not currently in the workforce. Conclusions: Results suggest high engagement in health risk behaviours among carers of people with a mental illness, particularly with regards to harmful alcohol consumption. Findings suggest a need to develop and implement chronic disease prevention strategies. Further research with larger representative samples is needed to confirm findings. 

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The hidden patient: chronic physical morbidity, psychological distress, and quality of life in caregivers of older adults

Aim Increasing demands for care provision to older adults require good physical and mental health among caregivers. Few studies have examined the health status and correlates of quality of life among caregivers of older adults. The present study therefore sought to examine the prevalence of chronic physical conditions, psychological distress, and correlates of physical and mental quality of life among caregivers of older adults (≥60 years) in Singapore. Methods Participants were 285 informal caregivers who were providing care to an older relative. Participants were recruited at the Institute of Mental Health, Singapore, and they completed self-report measures on chronic physical morbidity, psychological distress, and physical and mental quality of life. Multiple regression models were constructed to examine correlates of physical and mental quality of life. Results More than half of the caregivers had at least one chronic physical condition (58.6%) and psychological distress (52.6%). Chronic physical morbidity, psychological distress, and secondary education status were associated with lower physical quality of life. Psychological distress, younger age, primary education status, and more time spent caregiving were associated with lower mental quality of life. Conclusion Poor physical and mental health among caregivers may impair their ability to provide adequate care to older adults with progressive medical needs. It is important for medical practitioners not to neglect the physical and mental health of caregivers through continued assessment of chronic physical morbidity, psychological distress, and quality of life.

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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 impact of informal cancer caregiving: A literature review on psychophysiological studies

Caregiving can be experienced as a stressful process, which can cause psychological and physical consequences. The combination of prolonged stress and the physical demands of caregiving may impair the physiological functioning of caregivers and increase the risk of health problems creating considerable stress in the life of caregivers regarding emotional, physical, social and financial areas. This literature review explored studies that used measures of the autonomic nervous system in caregivers of oncology patients such as electrodermal and cardiovascular (re)activity. The results revealed that caregivers had elevated stress levels and a serious autonomic imbalance that may, in the long term, trigger negative health consequences such as infectious diseases, cancer progression, cardiovascular disease and even premature death. The results showed the need to carry out preventive strategies in this population, in order to improve the autonomic profile of caregivers of cancer patients.

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Health of Carers of Young People with Early Psychosis: A Biopsychosocial Approach

Despite widespread recognition of the usefulness of a biopsychosocial approach in social work, there are limited studies exploring how social workers can use this approach to support the health and wellbeing of carers of young people with first episode psychosis (FEP). Validated questionnaires and anthropometric measures were used to assess the physical health and wellbeing of 42 carers of young people with FEP. Carers had moderate levels of negative caregiving consequences, quality of life, and health status. More than half (52.4%) of carers were experiencing social isolation. Many carers were overweight (78.6%), had a high risk for type 2 diabetes (39.0%), and had hypertension (33.3%). Practical implications of a biopsychosocial approach to social work that supports both clients and their carers are discussed. Social workers can better utilise the biopsychosocial approach in working with young people with first episode psychosis and their carers. Holistic care using a biopsychosocial approach should support individuals and their families in both physical and mental health. Social workers can further support the health and wellbeing of carers by collaborating with medical and other allied health colleagues within multidisciplinary teams, and by referring carers with physical health problems to general practitioners.

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Adult Day Service Use Decreases Likelihood of a Missed Physician's Appointment Among Dementia Caregivers

BACKGROUND/OBJECTIVE Adult day services (ADSs) that provide community‐based supervised support for persons with dementia (PWD) may also function as a respite for familial caregivers to attend to self‐care needs. Guided by a revised version of the Andersen Healthcare Utilization Model, the objective of this study was to identify the association between use of ADSs and a missed physician's appointment among family caregivers for community‐dwelling familial PWD. A secondary objective was to identify other predisposing, enabling, and need factors associated with a missed physician's appointment. DESIGN Secondary analysis of baseline, cross‐sectional data from two randomized controlled trials (Advancing Caregiver Training, n = 272; and Care of Persons With Dementia in Their Environments, n = 237). SETTING Community. PARTICIPANTS Community‐dwelling caregivers for PWD (n = 509). MEASUREMENTS Missed physician's appointment was measured using the caregivers' self‐report of one or more missed physician's appointments (yes/no) in the past 6 months. ADS use was measured using the caregivers’ self‐report of ADS use (yes/no). RESULTS Over a third of the caregivers utilized ADSs for their PWD. Caregivers who utilized ADSs for their familial PWD were 49% less likely (95% confidence interval = 0.32‐0.81) to miss a physician's appointment in the past 6 months. More black compared to white caregivers missed appointments regardless of ADS use. Caregivers with increased chronic health conditions were more likely to miss a physician's appointment compared to those with fewer conditions. CONCLUSION ADSs’ provision of respite enables caregivers the time to address self‐care needs by decreasing the likelihood that caregivers miss a physician's appointment. Findings suggest that ADSs may promote positive health behaviors for caregivers and should be expanded as part of comprehensive dementia care for families. Factors associated with missed physician appointments need further examination and intervention to support black caregivers.

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Factors predicting the health status of caregivers of stroke survivors: A cross-sectional study

In this cross-sectional study, we aimed to determine factors influencing the health status of caregivers of stroke survivors. A total of 126 caregivers of stroke survivors were recruited from three outpatient clinics in Thai Nguyen National General Hospital, Vietnam, from November 2016 to March 2017. Data were collected through six instruments: a demographic questionnaire, the Modified Barthel Index, the Zarit Burden Interview Scale, the Multidimensional Scale of Perceived Social Support, the Family Caregiver Conflict Scale, and the Short Form-36 Health Survey. Stepwise multiple regression was employed to analyze the data. Caregiver burden, patient's functional status, caregiver's age, and social support together explained 80.3% of the variations in health status of caregivers of stroke survivors. Caregiver burden was the strongest predictor of health status of these caregivers. Based on the findings, nurses should take caregiver's age, functional status of stroke survivors, caregiver burden, and social support into consideration when preparing family caregivers to provide care for stroke survivors. To reduce perceived caregiver burden, family support interventions should be embraced to enhance health status of the caregivers of stroke survivors.

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Support groups for carers of a person with dementia who lives at home: A focused ethnographic study

Aims: To explore and understand carer participation in support groups when caring for a person with dementia who lives at home Design: Focused ethnographic design.; Methods: Participant observations and semi-structured interviews were conducted from January - December 2015. The data were collected from four support groups in the Danish primary health care system. Interviews were conducted with 25 carers. An inductive content analysis of the data was performed.; Results: Three themes were identified: emotional well-being due to peer and family support, emotional sense of togetherness despite hardships and emotional and ethical considerations in caregiving.; Conclusion: Support group participation with positive peer interaction increases carer self-esteem and feelings of togetherness, as well as an awareness of maintaining the care receiver's dignity and prevention of conflicts with families, resulting in an improvement in carer well-being, leading to increased motivation to continue caring. Carers who hid their group participation face a potential conflict with the care receiver. 

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A responsibility that never rests - the life situation of a family caregiver to an older person

Background: When the ageing population increases, the burden and responsibility of close family members will likely increase. Those closely related who assume a great responsibility can be significantly affected in health, well‐being and daily life. Aim: This study aims to describe the life situation when family caregivers are imposed responsibility for an older person with complex care needs in their own home. Methods: In this Swedish qualitative study, ten family caregivers were strategically selected in order to achieve variations in the life situation. A reflective lifeworld research design based on phenomenological philosophy was used throughout the data collection with the lifeworld interviews and the analytic process. Findings: In terms of extensive responsibility, the life situation is complex and involves emotions that are difficult to manage. In essence, a paradoxical life situation is described which is experienced as both voluntarily and nonchosen at the same time. The responsibility never rests. The essential meaning is further illustrated with three constituents: loss of freedom, contradictory feelings and affected relationships. Conclusion: A life situation with extensive responsibility for an older family member interferes with the whole life situation with an impact on health and relationships with other people. The findings are crucial for professional caregivers in order to capture the nature of family support in a way that enables a meaningful life for both the family caregiver and the older person being cared for. Knowledge of this will give professional caregivers an increased awareness of the life situation of family caregivers and provide a better understanding of the support they are longing for, and, in some countries, such as Sweden, also are entitled to by law.

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State of Caring 2019: A snapshot of unpaid care in the UK

Carers UK carried out an online survey between March and May 2019. A total of 8,069 carers and former carers responded to the survey – we have only included responses from the 7,525 people who are currently providing care in this report. Compared to the carer population as a whole, respondents to this survey were more likely to be female and caring for a high number of hours every week. Of respondents to the survey:

  • 73% live in England, 10% live in Scotland, 9% live in Northern Ireland, and 8% live in Wales.
  • 81% identify as female and 18% identify as male.
  • 24% consider themselves to have a disability.
  • 1% are aged 0–24, 4% are aged 25–34, 13% are aged 35–44, 30% are aged 45–54, 32% are aged 55– 64, 14% are aged 65–74, and 5% are aged 75 and over. 
  • 3% identified as lesbian, gay or bisexual.
  • 5% described their ethnicity as black or minority ethnic.
  • 20% also have childcare responsibilities for a non-disabled child under 18. 
  • 39% are in paid work. Of those, 47% work full-time and 53% part-time. 
  • 31% have been caring for 15 years or more, 15% for between 10–14 years, 24% for 5–9 years, 26% for 1–4 years, and just 4% have been caring for less than one year. 
  • 46% care for 90 or more hours every week, while 17% care for 50–89 hours, 23% care for 20–49 hours, and 13% care for 1–19 hours a week. 
  • Most (74%) care for one person, 20% care for two people, 5% for three people, and 2% care for four or more people. 

As not all respondents completed every questions in the survey, a number of the figures given in this report, including those presented in this Appendix, are based upon responses from fewer than 7,525 carers. This, together with the sample sizes of different groups, should be taken into consideration when reading the results.

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Effects of long‐term care setting on spousal health outcomes

Objective To provide empirical evidence on the effects of home and community‐based services (HCBS) (vs nursing home) use on spousal health. Data Sources Merged data from the 1996 to 2012 Health and Retirement Study (HRS) and the Area Health Resource File (AHRF). Study Design We assess the impact of HCBS use on spousal health. We use an instrumental variable (IV) approach to account for the potential endogeneity of the choice of care setting and reverse causality. Our instrument is the supply of skilled nursing home beds per 1000 people older than 65 years. Data Extraction Methods Our sample includes spouses of HCBS or nursing home users, resulting in 8608 observations. Principal Findings We find that HCBS use leads to harmful effects on spousal physical health, which may be caused by increased informal care responsibilities. We also find improved spousal mental health, especially in depression symptoms, which may be caused by increased satisfaction. Conclusions We find evidence of both beneficial (mental health) and harmful (physical health) consequences for spouses of individuals receiving LTC at home relative to in an institution. Our results are important in estimating the potential cost and effectiveness of HCBS expansion.

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Unpaid Caregiving Roles and Sleep Among Women Working in Nursing Homes: A Longitudinal Study

Background and Objectives Although sleep is a critical health outcome providing insight into overall health, well-being, and role functioning, little is known about the sleep consequences of simultaneously occupying paid and unpaid caregiving roles. This study investigated the frequency with which women employed in U.S.-based nursing homes entered and exited unpaid caregiving roles for children (double-duty-child caregivers), adults (double-duty-elder caregivers), or both (triple-duty caregivers), as well as examined how combinations of and changes in these caregiving roles related to cross-sectional and longitudinal sleep patterns. Research Design and Methods The sample comprised 1,135 women long-term care employees who participated in the baseline wave of the Work, Family, and Health Study and were assessed at three follow-up time points (6-, 12-, and 18-months). Sleep was assessed with items primarily adapted from the Pittsburgh Sleep Quality Index and wrist actigraphic recordings. Multilevel models with data nested within persons were applied. Results Women long-term care employees entered and exited the unpaid elder caregiving role most frequently. At baseline, double-duty-child and triple-duty caregivers reported shorter sleep quantity and poorer sleep quality than their counterparts without unpaid caregiving roles, or workplace-only caregivers. Double-duty-elder caregivers also reported shorter sleep duration compared to workplace-only caregivers. Over time, double-duty-elder caregiving role entry was associated with negative changes in subjective sleep quantity and quality. Discussion and Implications Simultaneously occupying paid and unpaid caregiving roles has negative implications for subjective sleep characteristics. These results call for further research to advance understanding of double-and-triple-duty caregivers' sleep health and facilitate targeted intervention development. 

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What Is Missing for You to Be Happy? Comparison of the Pursuit of Happiness Among Cancer Patients, Informal Caregivers, and Healthy Individuals

Context: After cancer diagnosis, personal value priorities may change in a way that would transform such values and how life is perceived by cancer patients and their caregivers, including happiness and its pursuit.; Objectives: The objective of the study was to analyze and compare what cancer patients, informal caregivers, and healthy population believe that would make them happy.; Methods: A qualitative content analysis was performed on the responses to a single question: "What is missing for you to be happy?" Narratives of cancer patients (n = 242, face-to-face interview), informal caregivers (n = 125, face-to-face interview), and healthy participants (n = 1,671, recruited through social media, online survey) were analyzed. Word clouds were created for each group of participants. Contents were identified and frequencies were compared among participants by means of chi-square and Fisher's exact tests.; Results: Overall, participants were pursuing better health (n = 288, 14.1%), better interpersonal relationships (n = 456, 22.4%), money (n = 412, 20.2%), and work-related aspects (n = 481, 23.6%). Cancer patients and informal caregivers sought better health and cure more often than when compared to healthy people (P < 0.001). Among cancer patients, survivors' profile tended to be similar to that of the healthy population concerning what they need to be happy. Unexpectedly, "cure" (22.7%) was more frequent among participants with incurable cancer.; Conclusion: Regardless of the group they were in, participants sought happiness in what they considered to be important to their lives, but it was something they did not have at the time of the interview. Psychoeducational and cognitive-behavioral strategies focused on how to deal with life expectations among people facing cancer are awaited.

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How Is the Caregiver Doing? Capturing Caregivers' Experiences With a Reflective Toolkit

Background: This paper describes the Co-Care-KIT, a reflective toolkit designed to provide insights into the diverse experiences of home-based informal caregivers during the delivery of care to a relative or loved one.  Objective: The aim of this study was to evaluate the toolkit, including a custom-designed journal, tools for photography-based experience sampling, and heart rate tracking, which enables caregivers to collect and reflect on their positive and negative daily experiences in situ. Methods: A 2-week field study with informal caregivers (N=7) was conducted to evaluate the Co-Care-KIT and to capture their daily personal emotional experiences. The collected data samples were analyzed and used for collaborative dialogue between the researcher and caregiver. Results: The results suggest that the toolkit (1) increased caregivers’ awareness of their own well-being through in situ reflection on their experiences; (2) empowered caregivers to share their identities and experiences as a caregiver within their social networks; (3) enabled the capturing of particularly positive experiences; and (4) provided caregivers reassurance with regards to their own mental health. Conclusion: By enabling capturing and collaborative reflection, the kit helped to gain a new understanding of caregivers’ day-to-day needs and emotional experiences.

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Health effects of caring for and about parents and spouses

Informal caregiving is a potentially attractive alternative to formal care but may entail health costs for the caregiver. We examine the mental and physical health impact of providing informal care and disentangle the caregiving effect – the effect of caring for someone in need – from the family effect – the effect of caring about someone in need. We account for the main sources of endogeneity in the caregiving decision using Arellano-Bond difference GMM models. We use four waves (2010–2013) of panel data from the Dutch Study on Transitions in Employment, Ability and Motivation (STREAM). We find that caregiving harms the mental health of caregivers the effect is more prominent for spousal caregivers. On top of this, a negative health shock of a family member also has a direct negative effect on mental health, providing evidence of a family effect. Our findings thus highlight that the total effect of having a sick relative may be underestimated when the family effect is not adequately accounted for. As the caregiving effect differs substantially between various types of caregivers, policies to cushion these effects should specifically target those subgroups of caregivers that carry the largest burden of informal caregiving.

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Living environment, social support, and informal caregiving are associated with healthcare seeking behaviour and adherence to medication treatment: A cross-sectional population study

Despite the well-known associations between local environment and health, few studies have focused on environment and healthcare utilisation, for instance healthcare seeking behaviour or adherence. This study was aimed at analysing housing type, behaviour based on perceived local outdoor safety, social support, informal caregiving, demographics, socioeconomics, and long-term illness, and associations with health-seeking and adherence behaviours at a population level. This study used data from the Swedish National Public Health Survey 2004-2014, an annually repeated, large sample, cross-sectional, population-based survey study. In all, questionnaires from 100,433 individuals were returned by post, making the response rate 52.9% (100,433/190,000). Descriptive statistics and multiple logistic regressions were used to investigate associations between explanatory variables and the outcomes of refraining from seeking care and non-adherence behaviour. Living in rented apartment, lodger, a dorm or other was associated with reporting refraining from seeking care (adjusted OR 1.16, 95% CI 1.00-1.22), and non-adherence (adjusted OR 1.22,95% CI 1.13-1.31). Refraining from going out due to a perceived unsafe neighbourhood was associated with refraining from seeking care (adjusted OR 1.59, 95% CI 1.51-1.67) and non-adherence (adjusted OR 1.26, 95% CI 1.17-1.36). Social support and status as an informal caregiver was associated with higher odds of refraining from seeking medical care and non-adherence. This study suggests that living in rental housing, refraining from going out due to neighbourhood safety concerns, lack of social support or informal caregiver status are associated with lower health-seeking behaviour and non-adherence to prescribed medication.

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Racial Differences in Caregiving: Variation by Relationship Type and Dementia Care Status

Objective: To examine differences between White and African American caregivers in strain, health, and service use in a population-based sample of informal caregivers for older adults. We also assessed whether relationship type (parent, other family, friend) and dementia care status (yes or no) were moderators of any racial differences. Method: We examined 887 informal caregivers via covariate-adjusted 3 × 2 × 2 factorial ANOVAs. Results: After covariate adjustment, there were few significant racial differences in caregiving strain, health, and service use. Dementia caregivers reported greater strain, and there were three-way interactions among relationship type, dementia care status, and race for physical strain and emotional stress. Discussion: Previous findings suggesting substantial racial differences in caregiver strain, which have primarily come from convenience samples that combined care relationship types, were not replicated. Racial and ethnic differences in caregiving may be context-specific. Historical changes in caregiving should be examined in future research.

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Six mechanisms behind carer wellbeing effects: A qualitative study of healthcare delivery

Health and care services for patients may improve or harm the wellbeing of their family carers. Formal consideration of these effects (also known as spillovers) in decision-making is advocated, but, to date, little is known about how they occur. This paper presents the first empirical study to determine the mechanisms by which health and care services affect family carers' wellbeing. The study focused on three major health conditions: dementia, stroke, and mental health. Focus groups and interviews were conducted with 49 purposefully sampled care professionals and family carers in the UK between December 2016 and September 2017. Transcripts were coded and analysed thematically, using descriptive accounts and an explanatory account. The analysis generated six over-arching mechanisms by which health and care services affect family carers' wellbeing, through:

  • (i) information (degree to which service delivery informs and trains family carers)
  • (ii) management of care (shifts of responsibility for care between formal and family sectors)
  • (iii) patient outcomes (services changing patient outcomes)
  • (iv) alienation (feelings of alienation or inclusion created by service delivery)
  • (v) compliance (barriers to patients complying and engaging with services)
  • and (vi) timing or location (changes in the timing or location of services).

Each mechanism was associated with sub-themes relating to both positive and negative spillovers on the family carers. The six mechanisms can be summarised with the mnemonic ‘IMPACT’. The IMPACT mechanisms may be useful in designing and evaluating services to optimise the wellbeing of carers as well as patients. •First qualitative study to identify mechanisms behind family carer spillovers.•Mechanisms were ‘information’, ‘management’, ‘patient’, ‘alienation’, ‘compliance’, ‘timing’.•Summarised by mnemonic IMPACT and relevant across conditions.•Each mechanism generated positive and negative spillover.

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A forgotten Army: Coping as a carer

Unpaid carers are the backbone of our society who often go unrecognised for their dedication and compassion. They face a range of challenges as they attempt to juggle their work-life-care responsibilities. That’s why we decided to commission YouGov to conduct a UK-wide research project focused on identifying gaps in support and sought to understand the views of unpaid carers.

Key findings

The impacts of loneliness, poor mental and physical health, financial worries and a lack of flexibility to learn or train are placing unpaid carers under increasing strain.

  • Two thirds (64%) of carers were most likely to feel the effect of caring on their social life, causing loneliness, which most commonly manifested as a result of having less time to themselves (48%), socialising less (47%) and generally having less contact with others (41%).
  • The next most common impact was mental ill health (49%). This included increased stress (42%), anxiety (33%) and depression (27%).
  • Almost half (45%) mentioned impacts that caring had on their family life, most notably spending less time with family.
  • Two in five carers reported an impact of caring on their physical health, most often mentioning tiredness (35%), trouble in sleeping (28%) and reduced fitness (20%).
  • More than two in five (44%) unpaid carers noted the impact of caring on their financial situation. The qualitative phase of the research also revealed many hidden costs of caring, including paying for medical supplies and transport to and from appointments.
  • Three in ten unpaid carers aged 16-34 said that their education or training had been affected.

When carers were asked about their support needs, a sizable majority (74%) of carers felt that further support in some form would be useful to them, with a common desire for emotional support (33%). Carers also sought information and advice about the support available, respite care, and finances. Our report also found that there was a need for advice about maintaining good mental and emotional health, shining a light on the often unexpected levels of stress, isolation and despondency felt by unpaid carers.

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Physical and mental health of Chinese grandparents caring for grandchildren and great-grandparents

The increasing worldwide prevalence and intensity of grandparenting has attracted an attention to its health implications for caregivers against the backdrop of population aging. Thanks to prolonged life expectancy and reduced infant mortality, extended families that comprise four generations, co-residential or not, are no longer rare in China. The current study examines health consequences when Chinese grandparents provide care to not only grandchildren but also their own elderly parents or parents-in-law (i.e., great-grandparents). Drawing on data from the 2011–2013 China Health and Retirement Longitudinal Study (CHARLS), mental health was captured by levels of life satisfaction and depressive symptoms, and physical health was measured by levels of high sensitivity C-reactive protein (CRP), hypertension, high-risk pulse rate, and diabetes. Overall grandparents who cared for grandchildren only had better mental and physical health, compared with non-caregivers. There was some evidence that the 'sandwich' grandparents who cared for both grandchildren and great-grandparents reported greater life satisfaction, fewer depressive symptoms, and reduced hypertension compared with non-caregivers. The health advantage of caregiving was most pronounced in urban grandfathers whose caregiving conformed to the norm of filial piety and who did so most likely to seek emotional reward instead of an intergenerational time-for-money exchange. In contrast, rural grandmothers were the most vulnerable group and their health disadvantage seemed to arise from caring for great-grandparents. These findings highlight the importance of rural-urban context and gender role in studying the health effects of intergenerational caregiving on Chinese grandparents. • About 30% of the Chinese elderly are grandparents in four-generation families. • The majority of them care for grandchildren, great-grandparents, or both. • Urban grandfathers enjoy health benefits from intergenerational caregiving. • Rural grandmothers suffer health risks from intergenerational caregiving.

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Refining caregiver vulnerability for clinical practice: determinants of self-rated health in spousal dementia caregivers

Background: Caregivers of a family member with a chronic disability or illness such as dementia are at increased risk for chronic disease. There are many factors that contribute to dementia caregiver vulnerability and these factors can be challenging to assess in clinical settings. Self-rated health (SRH) is an independent measure of survival and physical health in the elderly. As an inclusive measure of health, SRH has been proposed as a reliable way to assess a patient's general health in primary care. Therefore, we sought to identify determinants of poor/fair SRH versus categories of at least good SRH in informal caregivers.; Methods: In a cross-sectional study, we examined 134 elderly (≥55 years) providing in-home care for a spouse with dementia who rated their own health with a single-item question: "In general, would you say your health is excellent, very good, good, fair or poor?". In a multivariable model, we compared caregivers with poor/fair SRH to those with good, very good, or excellent SRH on demographics, health characteristics (health behaviors, physical health indicators, psychosocial factors) and caregiving-specific stress (a composite index/total of four caregiving-specific stressors: years of caregiving, dementia severity, care recipient functional impairment and perceived caregiver burden).; Results: Compared with caregivers who rated their own health as either good (31.3%), very good (38.8%) or excellent (14.2%), caregivers with poor/fair SRH (15.7%) were more likely to have lower physical function and total greater caregiving-specific stress. More years of caregiving, severe dementia and care recipient functional impairment, but not perceived caregiver burden, were also more likely among caregivers with poor/fair SRH. Additionally, high negative affect and low positive affect were more likely in caregivers with poor/fair vs. good or excellent and very good or excellent SRH, respectively.; Conclusions: Caregivers with poor/fair SRH were characterized by higher levels of medical comorbidity, low physical function, high negative, but low positive affect and longer duration of caregiving, as well as more severe dementia and greater functional impairment of the care recipient. These findings suggest that caregivers need to be more closely evaluated and targeted for preventive interventions in clinical practice.; Trial Registration: registration number: NCT02317523 .

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Sleep problems in adults with Down syndrome and their family carers

Background: Sleep disturbance is common and can have harmful psychological and physical effects. While sleep problems in children with Down syndrome (DS) have received a reasonable amount of attention, very little has been written about this topic in adults with DS.; Method: The present study consisted of an online survey completed by 100 family carers of adults with DS.; Results: High rates of sleep problems of different types were reported in the adults with DS comparable to those found in children with DS in previous research. Significant associations were found between sleep problems and body mass index, excessive daytime sleepiness and a range of health and psychological problems. Low rates of treatments for sleep problems were reported. The majority of family caregivers felt their own sleep was affected.; Conclusions: Sleep problems in adults with DS are common and varied. Assessment and treatment of such problems are likely to improve quality of life.

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The Hidden Health Crisis: What Family Caregivers Want You to Know

I looked at the diagnostic specialist and burst into tears. She had seen other women like me and knew what was wrong with my shoulder. Finally, after 14 months of being tossed between physicians, specialists, and physical therapists and many misdiagnoses, I had an answer: frozen shoulder. It explained the extreme pain in my shoulder along with the stiffness and inability to move the shoulder joint. This condition takes 1 to 3 years to resolve, and there is little that can be done to relieve the pain or force the shoulder to move. 

  1. MaryAnne’s Story

  2. The Caregiving Journey

  3. Stories From the Front Lines

  4. The Hidden Health Crisis

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Biomedical health profiles of unpaid family carers in an urban population in South Australia

Objectives: To compare the biomedical health profile and morbidity of adult carers with non-carers. Methods: The North West Adelaide Health Study (NWAHS) is a representative population-based longitudinal biomedical cohort study of 4056 participants aged 18 years and over at Stage One. Informal (unpaid) carers were identified in Stage 3 of the project (2008–2010). Risk factors, chronic medical conditions and biomedical, health and demographic characteristics using self-report and blood measured variables were assessed. Data were collected through clinic visits, telephone interviews and self-completed questionnaires. Risk factors included blood pressure, cholesterol/lipids, body mass index (BMI), smoking and alcohol intake. Chronic medical conditions included cardiovascular and respiratory diseases, diabetes, and musculoskeletal conditions. Blood measured variables were routine haematology, biochemistry, Vitamin D, and the inflammatory biomarkers high sensitivity C-Reactive Protein (hs-CRP), Tumor Necrosis Factor alpha (TNFα) and Interleukin-6 (Il-6). Results: The prevalence of carers aged 40 years and over was 10.7%, n = 191. Carers aged 40 years and over were more likely to assess their health status as fair/poor and report having diabetes, arthritis, anxiety and depression. They also reported insufficient exercise and were found to have higher BMI compared with non-carers. Significant findings from blood measured variables were lower serum Vitamin D and haemoglobin. Male carers had raised diastolic blood pressure, higher blood glucose, lower haemoglobin and albumin levels and slightly elevated levels of the inflammatory biomarkers TNFα and hs-CRP. Discussion and conclusions: This study confirms informal carers had different biomedical profiles to non-carers that included some chronic physical illnesses. It identifies that both female and male carers showed a number of risk factors which need to be considered in future caregiver research, clinical guidelines and policy development regarding carer morbidity. 

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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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Years of caregiving for chronically ill and disabled family members is not associated with telomere length in the Philippines

Background Caring for chronically disabled family members is a stressful experience. In turn, psychosocial stress is linked to premature aging. Telomere length (TL) is a plastic genetic trait that is a biomarker of aging, and a possible mechanism linking psychosocial stress and accelerated aging. Methods TL was measured using qPCR method from blood samples in 1233 Filipino adults from Cebu, Philippines. Caregiving was measured as chronicity of care, or the sum total number of years an individual was the primary caregiver for any household member with a chronic illness or disability. Linear regression models were used to test for associations between chronicity of care and TL. Interaction terms were used to test whether or not the association between chronicity of care and TL differed by sex, age, and relationship to the caregiver. Specific statistical designs were publicly pre-registered before analysis began. Results Chronicity of care was not associated with TL. Neither did we find any evidence for caregiving varying in its effect on TL by caregiver sex, age, or relationship to the chronically ill/disabled. Conclusions We found no evidence of an association between chronicity of care and TL. This result coupled with a recent study of a similarly sized cohort suggests that previous significant results linking caregiving and TL may be due to very particular types of caregiving populations or are possibly artifacts of small sample sizes. 

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Understanding influenza vaccination rates and reasons for refusal in caregivers and household contacts of cancer patients

Highlights • Influenza vaccination has limited efficacy in cancer patients. • Caregiver and family vaccination is recommended for high-risk patients. • Distance, age, and limited time decreased vaccine uptake in caregivers and family. • Efforts targeting vaccination for caregivers and family of cancer patients are needed.

Cancer patients are at increased risk for morbidity and mortality from seasonal influenza but are known to respond poorly to influenza vaccination. This single-center survey suggests that approximately one-third of cancer patients and their caregivers and family did not receive the vaccine in the prior season. Patients felt strongly that caregiver vaccination was important, whereas caregivers' decisions did not appear to be affected by the patients' disease.

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Health issues and informal caregiving in Europe and Italy

Informal caregivers are the unpaid persons who take care of a not self-sufficient family member, due to old age or chronic illness or disability. As in all the European countries, the demand for informal cares is further increased as a result of the ageing societies and the social and political fallout of informal caregiving is a very current and important issue. We have overviewed some international scientific literature, with the aim of understanding the key research objectives to be firstly pursued to address this problem. In particular, we focused on the psycho-physical health differences in informal caregivers, subjected to long lasting load and prolonged stress, as compared to non caregiver persons. We also underlined the relationship between caregiver health differences and stress, gender type, kind of the care recipient (autism) and social and political situation in Europe and Italy. The collected data indicate the necessity to prevent caregiver psychological and physical health by appropriate laws, especially supporting women, often most involved in care activities.

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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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Factors associated with sleep in family caregivers of individuals with dementia

Purpose: The study aimed to identify factors related to family caregivers' sleep. Design and Methods: The study used a cross‐sectional design with objective and subjective methods to measure sleep in the home setting over a 7‐day period. Findings: Findings indicated that poor sleep quality was found in 91.7% of the caregiver participants. Depression, sleep hygiene, burden, and care‐recipients' sleep were significant predictors of various dimensions of caregivers' sleep. Practice Implications: Our study suggests that sleep quality for family caregivers of individuals with dementia varies considerably from night to night. Understanding the complex interrelationships among caregivers' sleep and other contributing variables is an important first step toward the development of individualized and effective treatment strategies.

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Influence of caregiver burden on well-being of family member caregivers of older adults

Background: Caregiving to older adults is one of the most important social issues associated with aging. While caregiving provides a suitable care and supportive environment for older adults, changes in the lives of caregiving family members also affect their health. The aim of this study was to examine the effect of care burden on the well-being of family members providing care for older adults.; Methods: The study used a cross-sectional design. The study sample included 363 family caregivers of older adults. Socio-demographic questionnaire form, Burden Interview and Caregiver Well-Being Scale were used as data collection tools. Multiple linear regression analysis was performed to explore the predictors of well-being in the family caregivers of older adults.; Results: The caregiver burden mean score was 32.63 ± 15.72 and Caregiver Well-Being Mean score was 159.38 ± 24.55. Caregiver burden, perceived health status of the older adults, marital status, perceived health status of caregiver and social support of caregiver were found to be statistically significant predictors of well-being in family member caregivers of older adults. Caregiver burden level was found to be the strongest predictor of well-being in the family caregivers of older adults.; Conclusion: Results showed that caregiver burden had an important effect on well-being of the caregiver. For this reason caregiver burden should be considered during interventions for improving well-being in family caregivers of older adults. Findings of our study revealed the necessity of showing special attention to caregivers by healthcare professionals and the importance of conducting interventional studies that aim to reduce caregiver burden in order to promote well-being.

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Health-Promoting Self-Care in Family Caregivers of People With Dementia: The Views of Multiple Stakeholders

Background and Objectives: Family carers often experience difficulties managing their own needs, which can lead to ill health. This study aimed to explore the views of carers and other stakeholders about the factors related to health-promoting self-care behavior in family carers of people with dementia.; Research Design and Methods: This multimethod qualitative study involved three consultation events with multiple stakeholders (n = 46) and four focus groups with carers (n = 27). Anonymous notes were collected from the consultation events. Focus group discussions were tape recorded and transcribed verbatim. Inductive thematic analysis was used to analyze the data.; Results: Two overarching themes were identified and labeled "Services" and "Individual factors." Poor service organization and coordination, lack of respite breaks, lack of continuity of care, poor staff attitudes, as well as difficulty to prioritize own needs, health impact, financial impact, and relationships and feelings were related poorer carer health-promoting self-care behavior. Limited health-promoting self-care often led to situations of crisis, which were related to carers' health issues, need for emergency services, and unanticipated care home placement. Carers require high-quality respite to have more time to themselves, support from better coordinated and compassionate services, and more education and awareness about their own needs.; Discussion and Implications: There are several factors that may limit carers' involvement with health-promoting self-care activities, which may affect their own health, on the care provided to their relatives and on service use. Future research and policy need to consider how to better support cares to manage their own health issues.

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Improving health-promoting self-care in family carers of people with dementia: a review of interventions

Background: Providing care for a family member with dementia can leave little time for carers to look after their own health needs, which makes them more susceptible to mental and physical health problems. This scoping review aimed to explore potential health benefits of interventions aimed at improving health-promoting self-care in family carers of people with dementia.; Methods: A scoping review was carried out using Arksey and O'Malley's methodological framework. EMBASE, MEDLINE, PsycINFO and Google Scholar were consulted. Original and peer-reviewed research published in English up to April 2017 were included. Publications were selected by two reviewers independently. Eight experts from several countries provided extra relevant information, which was triangulated with the review results. A narrative approach was used to describe and discuss the review findings.; Results: Seven interventions were identified. These were highly heterogeneous in content, method of delivery, and outcome measures. None was specifically focused on improving and evaluating health-promoting self-care, instead they often focused on health promotion and healthy lifestyle (eg, physical activity). Some of the multi-component interventions included "self-care" as a domain, but none used a specific measure of health-promoting self-care, so we were unable to affirm that the improvements found in the interventions were due to an improvement in this area. Interventions helped reduce carer depression and burden and increased quality of life, positive affect, and physical activity. The expert panel recommended to consider carers' preparedness and capacity to adhere to self-care practices, as well as carers' age and culture. Future interventions should be context specific, flexible, and person-centered.; Conclusion: Psychosocial interventions may improve health-promoting self-care behavior, but more research is needed to establish efficacy. Interventions should be flexible, use a person-centered approach, be implemented with fidelity and use the right dosage.

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Self-Compassion, Health Outcomes, and Family Carers of Older Adults: An Integrative Review

Objectives: This review sought to synthesize published evidence about the role of self-compassion on health outcomes for family carers of older adults, to describe the current state of knowledge.; Method: Using an integrative review method that permitted any research design, eight databases were searched. Extensive searching of gray literature sources was also undertaken. Studies included in the review underwent processes of methodological quality assessment (Mixed Methods Appraisal Tool - Version 2011), data extraction, analysis, and syntheses.; Results: Four studies were included: two randomized controlled trials, a descriptive cross-sectional survey, and a qualitative study. There was preliminary evidence to show the potential of self-compassion to help family carers cope and reduce levels of burden. However, efficacy of self-compassion interventions to improve family carer health outcomes could not be determined.; Conclusions: Self-compassion in family carers of older adults is a new and emerging research area, and there is very little published evidence about how self-compassion might be developed to improve health outcomes for family carers.; Clinical Implications: To inform clinical understanding within this population, future quality research is needed, particularly regarding proof-of-concept, moderating effects of carer and care recipient factors, reliability of self-compassion measures, and the development and testing of self-compassion based interventions.

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Informal caregiving and mortality―Who is protected and who is not? A prospective cohort study from Japan

Informal caregiving is linked to psychological stress. However, recent studies have suggested a protective association between informal caregiving and mortality among caregivers. We sought to test the association between caregiving and survival in the Komo-Ise study, a prospective cohort of community-dwelling residents aged 44–77 years living in two areas in Gunma prefecture, Japan. Caregiving status was assessed in 2000, and 8084 individuals were followed for ten years. All-cause mortality was ascertained from official registers. Using multivariate Cox proportional hazards models, we found no statistically significant overall association between informal caregiving and all-cause mortality for either combined sexes, (HR 0.97, 95% CI 0.79, 1.19), men (HR 0.98, 95% CI 0.76, 1.27), or women (HR 0.95, 95% CI 0.68, 1.34). The propensity score matched model also showed no increased risk of all-cause mortality across all caregivers, male caregivers, and female caregivers. The association with all-cause mortality was not observed regardless of the presence of support for activities of daily living (ADLs)/instrumental activities of daily living (IADLs) or the relationships to the care recipients. In subgroup analyses, informal caregiving was not associated with increased risk of all-cause death across subgroups for combined sexes, men, or women, except for increased mortality among female caregivers in the lowest-income group (HR 1.75, 95% CI 1.03, 3.00). An increase in the risk of mortality was not observed among male caregivers. In conclusion, informal caregiving did not increase mortality as a whole, nor for most subgroups, while some sub-groups such as women in the lower socioeconomic status groups may be vulnerable to the adverse health effects of caregiving.


  • Informal caregiving often places a psychological and physical burden on caregivers.
  • But recent studies report a protective association between caregiving and survival.
  • We test the association between caregiving and survival in a 10 year follow-up study.
  • Overall, informal caregiving was not associated with increased mortality.
  • Increased mortality was observed only in the lowest-income female caregivers.
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Effects of Online Yoga and Tai Chi on Physical Health Outcome Measures of Adult Informal Caregivers

Aims: This study aimed to investigate the effects of online Vinyasa Yoga (VY) and Taijifit™ (12 weeks) in informal caregivers (≥18 years of age).; Methods: Twenty-nine participants were randomized to two groups: VY (n = 16, 55.87 ± 12.31 years) or Taijifit™ (n = 13, 55.07 ± 12.65 years).; Main Outcome Measures: Prior to and following the study, assessments were made for muscle strength (1-RM leg press, chest press, and handgrip), muscle endurance (leg press and chest press; maximal number of repetitions performed to fatigue at 80% and 70% baseline 1-RM, respectively), abdominal endurance (maximum number of consecutive curl-ups to fatigue), tasks of functionality (dynamic balance and walking speed), and flexibility (sit and reach).; Results: There was a significant increase over time for muscle strength, muscle endurance, tasks of functionality, and flexibility (P = 0.001). The VY group experienced a greater improvement in chest press endurance (VY: pre 19.25 ± 5.90, post 28.06 ± 7.60 reps; Taijifit™ pre 15.69 ± 4.49, post 21.07 ± 5.85 reps; P = 0.019) and abdominal endurance (VY: pre 37.12 ± 31.26, post 68.43 ± 55.07 reps; Taijifit™ pre 19.23 ± 19.00, post 32.07 ± 20.87 reps; P = 0.034) compared to the Taijifit™ group.; Conclusions: VY and Taijifit™ are effective for improving muscle strength and endurance, tasks of functionality, and flexibility in informal caregivers. VY led to greater gains in chest press endurance and abdominal curl-ups.

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Understanding Caregiver Quality of Life in Caregivers of Hospitalized Older Adults With Cancer

BACKGROUND/OBJECTIVES: Caregivers of older adults with cancer assist both with cancer care and other health issues, which may make them vulnerable to consequences of caregiving. Hospitalization may represent a time when a caregiver's ability to provide care at home is exceeded. We sought to characterize caregivers of hospitalized older adults with cancer, determine their quality of life (QOL), and identify factors associated with caregiver QOL. METHODS: Patients (n = 100), aged 65 years and older, with an unplanned hospitalization and their caregivers were included. Caregivers completed a questionnaire about their health, social support, caregiving relationship, QOL (Caregiver Quality of Life Index‐Cancer [CQOLC] tool), and patient function. Patient medical history was obtained via chart review. The association between patient, caregiving, and caregiver factors and CQOLC was determined using multivariate linear regression. RESULTS: Most patients (73%) had metastatic/advanced disease, and 71% received treatment for their cancer within 30 days of hospitalization. Median Karnofsky Performance Status (KPS) was 60%, and 89% required help with instrumental activities of daily living, as reported by caregivers. Median caregiver age was 65 years (range = 29‐84 years). The majority (60%) had no major comorbidities and rated their health as excellent/good (79%), though 22% reported worsening health due to caregiving. Caregivers had a median Mental Health Inventory‐18 score of 70 (range = 0–97), a median Medical Outcomes Study (MOS)‐social activity score of 56 (range = 0–87.5), and a median MOS‐Social Support Survey score of 68 (range = 0–100). Caregivers provided a median of 35 hours of care per week (range = 0‐168 hours of care per week). Mean CQOLC was 84.6 ± 23.5. Lower caregiver QOL was associated with poorer caregiver mental health, less social support, and poorer patient KPS (P < .05). CONCLUSION: Caregivers of hospitalized older adults with cancer are older but generally in good health. Those with poorer mental health, less social support, and caring for patients with poorer performance status are more likely to experience lower QOL. 

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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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Interdependence in Health and Functioning Among Older Spousal Caregivers and Care Recipients

Older spousal caregiving relationships involve support that may be affected by the health of either the caregiver or care recipient. We conducted a longitudinal analysis using pooled data from 4,632 community-dwelling spousal care recipients and caregivers aged ⩾50 from the 2002 to 2014 waves of the Health and Retirement Study. We specified logistic and negative binomial regression models using lagged predictor variables to assess the role of partner health status on spousal caregiver and care recipient health care utilization and physical functioning outcomes. Care recipients' odds of hospitalization, odds ratio (OR): 0.83, p <.001, decreased when caregivers had more ADL difficulties. When spouses were in poorer versus better health, care recipients' bed days decreased (4.69 vs. 2.54) while caregivers' bed days increased (0.20 vs. 0.96). Providers should consider the dual needs of caregivers caring for care recipients and their own health care needs, in adopting a family-centered approach to management of older adult long-term care needs.

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Health-related consequences of caring for dependent relatives in older adult caregivers

Objective: To know the health-related consequences of caring for dependent relatives in older adult caregivers.; Method: Qualitative research carried out with older adult women who cared for family members enrolled in a federal public home care program. The identification of the older adult caregivers was done by consulting the patient's charts, and the interview took place from March to June 2017. The data were systematized based on Content Analysis.; Results: Six older adult caregivers of people with impaired functional capacity participated in the study. Three categories emerged: care-related musculoskeletal pain; health problems related to the somatization of the lived feeling; and self-care deficit by virtue of caring for another.; Conclusion: The study revealed the consequences of caring for dependent family members on the health of older adult caregivers. Careful management is essential to prevent and/or reduce health problems, especially regarding the musculoskeletal system.

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Informal caregiving experiences in posttraumatic stress disorder: A content analysis of an online community

This study explored the experiences of individuals who self‐identify as providing support to a friend, family member, or significant other with posttraumatic stress disorder (PTSD). We analyzed and coded a total of 345 posts from an online support forum, with reference to 13 categories (finances, life interference, venting/emotional expression, maltreatment, sexual behavior, distress, prevented expression, physical health, communication, no personal space, isolation, and compassion fatigue). Categories for coding were established a priori and based on previous literature about caregiving and supporting. Results suggested that informal PTSD caregivers experience concerns involving interpersonal relations, emotional turmoil, and barriers to care for themselves and the individual they are caring for. This study provides a preliminary examination of the experiences and concerns of PTSD caregivers. Implications and suggestions for future research are discussed. 

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The impact of carer status on participation in healthy activity and self-reported health among Australian women over 50 years

Background/aim: Occupational therapists frequently work with carers and their family member who requires direct services. In Australia, women provide the majority of informal care. Carer status is determined by the provision of informal help or supervision to an older person, or a person with a disability or long-term health condition. Caregiving responsibilities can impact mental and physical health and reduce women's participation in leisure activities and the labour force. The aim of the study was to examine differences in the participation of Australian women, aged 50 years and over, with and without caregiving responsibilities, in self-selected health promoting activities, self-reported mental health and participation in physical activity.; Methods: This cross-sectional study investigated Australian women (N = 157) who completed a survey comprising demographic questions, the Depression Anxiety Stress Scales-21 (DASS-21), International Physical Activity Questionnaire-Short Form (IPAQ-SF) and the Health Promoting Activities Scale (HPAS). Differences between carers and non-carers in participation in health promoting activities, mental health, physical activity and labour force participation were investigated using Mann-Whitney U and Kruskal-Wallis tests.; Results: Carers reported significantly lower participation in health promoting activities (P < 0.001), vigorous physical activity (P = 0.001) and moderate physical activity (P = 0.009). Carers also reported significantly higher responses than non-carers, in symptoms of depression, anxiety and stress (P < 0.001). Carers were significantly more likely than non-carers to be engaged in part-time employment, with 37% of carers employed part-time and 44% of carers not working.; Conclusion: These findings indicate significant differences between women with and without caregiving responsibilities and their participation in health promoting activities, self-reported mental health, participation in physical activity and the labour force. Carers may benefit from occupational therapy that recognises the important role of carers in the life of their family member and supports carer's health and participation in health promoting activities.

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The hidden cost of informal care: An empirical study on female caregivers' subjective well-being

Using data from the China Health and Nutrition Survey (CHNS), this study investigated the impact of informal care on female caregivers' subjective well-being in China. We found that informal care significantly reduced the subjective well-being of female caregivers using the instrumental variable (IV) ordered probit model. Our results revealed that the care effect on subjective well-being was more significant for rural caregivers than for urban caregivers. The more hours or more recipients care was provided for, the greater the negative impact on subjective well-being. Based on these findings, we further identified the two channels of 'wealth' and 'health' through which informal care lowered subjective well-being. These results have implications for policy makers in overcoming the challenges involved in constructing and developing a supportive system of informal care in China. Highlights • Informal care significantly reduced the subjective well-being of female caregivers. • Care effects on subjective well-being were more significant for rural caregivers. • The more care given, the larger the negative impact on subjective well-being. • Caregiving reduced subjective well-being through lower wealth and worse health.

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A translational approach to design effective intervention tools for informal caregivers of dependent cancer patients

Objectives Caregivers of terminal patients often report a higher prevalence of unmet needs than cancer survivors. However, very few interventions have been carried out to support caregivers of patients in advanced stages, and, in most cases, they have not been rigorously designed and evaluated. The ultimate aim of this research was to obtain specific information about the sociodemographic characteristics, the different types of care provided, the symptoms due to burdens, the impact of caring on the quality of life, and the unmet needs of informal caregivers of dependent patients with cancer. This is to design effective intervention programs that can be implemented from the hospital setting itself and therefore, to improve their quality of life and prevent the deterioration of their health. Study design A cross-sectional design and survey methodology were used for descriptive purposes. Methods The sample was composed of 132 informal caregivers of dependent patients with cancer, from a public hospital in Valencia, Spain, who were identified through the patient database of the oncology service, over the 4-month data collection period. Self-administered questionnaires were combined with personal interviews: Interview Protocol for the main caregiver, Questionnaire ICUB97, and survey of hospital quality. Results The most frequently provided types of care included the following: keeping the patient company, acting as an intermediary between them and healthcare workers, and helping them to do basic daily life activities. The main negative consequences caregivers reported were the following: feeling more tired, having less free time, changing their daily routines, and having fewer social relationships/interactions and various emotional and physical symptoms. Many of the needs of informal caregivers were not being met: resolution of doubts about illness, training in the care they should provide to the patient, and psychological help. Conclusions Recommendations for the development of effective intervention programs are offered: increasing the psychological services provided in oncology units, training medical staff in communication skills, facilitating access to information about the disease through different means, training for informal caregivers in care techniques, coping and communication skills, self-care, and organization of time. On the one hand, implementing effective intervention programs for informal caregivers will reduce the amount withdrawing from their care duties and on the other hand, the proliferation of what are known as secondary patients. Highlights • Caregiving women were more prevalent than men, with an average age of 45 years, and a medium socioeconomic status. • The most frequently provided cares were helping patients in basic activities and mediating between them and medical staff. • The main negative consequences for caregivers were changing daily routines and various emotional and physical symptoms. • The main unmet need of caregivers was specific information and training about the care they should provide to the patient.

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The role of resilient coping in dementia carers' wellbeing

Background: Carers of people with dementia are at risk of psychological distress. However, some carers experience positive outcomes and resilient coping may account for this variance in carers' wellbeing. Aims: To assess the role of resilient coping in dementia carers' wellbeing. Methods: A cross-sectional survey of carers measured resilient coping, depression, anxiety, stress and burden. First, group comparisons between carers with high, medium and low resilient coping were made. Next, mediation analyses were conducted to identify if resilient coping was a mediator in the relationships between carer wellbeing and distress. Findings: Carers (n=110) were aged 30–80+ years; 66% female; 72% provided 40+ hours care per week; 23% were highly resilient. Highly resilient carers report significantly less distress than low resilient carers. Resilient coping was a partial mediator in the relationships between wellbeing and depression, anxiety, stress and burden. Conclusions: Interventions promoting or maintaining resilient coping may reduce morbidity in family carers.

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Older adults neglected by their caregivers: vulnerabilities and risks identified in an adult protective services sample

Purpose Using a risk and vulnerability framework, the purpose of this paper is to describe the characteristics of older adults that Adult Protective Services (APS) substantiated for neglect by caregivers, their caregivers and the interrelationships between them. Design/methodology/approach The paper uses a qualitative study of 21 APS case record narratives using a template analysis. Findings Neglect related to withholding or refusing medical care was the most common. The older adults had multiple health conditions and geriatric syndromes. Caregivers had difficulties in carrying out caregiving role due to health and mental health issues, work responsibilities and lack of insight into older adults’ needs. The refusal to access or accept services by both the older adults and the caregivers was a predominant theme. Research limitations/implications The sample size was small, limited to one geographical area, and non-representative of all neglect cases. The data were extracted from written case narratives and not directly from the older adults and their family members. Case records varied in the case detail provided. Practical implications To protect vulnerable older adults and improve quality of life, APS involvement in cases of caregiver neglect needs strategies to get people to accept help and access services to address multiple health and psychosocial problems for both older adult victims and their caregivers. Originality/value This study provides in-depth information on APS cases involving caregiver neglect that add to understanding of this complex problem and points to areas for further study.

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A qualitative study of older informal carers’ experiences and perceptions of their caring role

Background and aims: Unpaid family carers, or caregivers as they are also known, often play a vital role in supporting others with illness or disability living in the community. Overall numbers of carers are growing but numbers of older carers are increasing particularly rapidly as populations age worldwide. However, little research has focused on this important older group. This qualitative study therefore investigated older carers’ experiences and their perceptions of their role. Methods: Five digitally recorded focus groups with carers from Greater London were undertaken. Recordings were transcribed and analysed thematically. Findings: Forty-four carers aged 70–87 years participated. Most were female and two-thirds were spouses or partners. Overall, the carers thought their experiences were similar to those of younger adult carers and included both satisfying and challenging facets. However, they thought that some of the more negative aspects of the role were more difficult for older carers. Their own declining physical and emotional health and strength were seen as making it harder to access support and maintain social contacts. Loneliness both outside and within relationships featured prominently and was perceived as especially significant for housebound carers and when caring for someone with dementia. Many of these older carers also worried about the future when they might no longer be able to be a carer due to their own ill-health or death. Conclusions: Older carers find their role challenging and future investigations should focus on identifying means of reducing their isolation and supporting them with planning for the future. 

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Acceptability of a Dyadic Tai Chi intervention for older people living with dementia and their informal carers

Exercise is effective in preventing falls among older adults. However, few studies have included people living with dementia and their carers and explored their experiences. The aim of this study is to explore what affects the acceptability of exercise interventions to better meet the needs of people with dementia and their carers as a dyad. Observations, field notes containing participant's and instructor's feedback, and focus groups with 10 dyads involved in Tai Chi classes for 3 or 4 weeks in two sites in the South of England were thematically analyzed to understand their experiences. Findings suggest that dyads' determination to achieve the benefits of Tai Chi facilitated their adherence, whereas a member of the dyad's low sense of efficacy performing the movements during classes was a barrier. Simplifying class content and enhancing the clarity of instructions for home-based practice will be key to support the design of future exercise interventions. 

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Formal Care of the Elderly and Health Outcomes Among Adult Daughters

Health-care expenditures and the demand for caregiving are increasing concerns for policy makers. Although informal care to a certain extent may substitute for costly formal care, providing informal care may come at a cost to caregivers in terms of their own health. However, evidence of causal effects of care responsibilities on health is limited, especially for long-term outcomes. In this paper, we estimate long-term effects of a formal care expansion for the elderly on the health of their middle-aged daughters. We exploit a reform in the federal funding of formal care for Norwegian municipalities that caused a greater expansion of home care provision in municipalities that initially had lower coverage rates. We find that expanding formal care reduced sickness absence in the short run, primarily due to reduced absences related to musculoskeletal and psychological disorders. In general, we find no effects on long-term health outcomes.

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Chronic Stress, Social Isolation, and Perceived Loneliness in Dementia Caregivers

Caregivers of individuals with dementia are at risk for chronic stress and social isolation. These exogenous factors may lead to perceived stress and perceived loneliness—psychosocial endogenous (subjective) elements of caregiving experience. Chronic stress and perceived loneliness may disrupt neuroendocrine and neuroimmunological regulation, creating low-grade systemic inflammation, promoting proinflammatory gene expression, and expediting cellular aging (endogenous physiological factors). These disturbances may enhance caregivers' risk for chronic conditions of inflammatory pathogenesis. Thus, caregivers' perceived stress and perceived loneliness may form a symptom cluster that can serve as a marker of risks for physical and mental illness. Due to the overwhelming reliance on family caregivers within the increasing population of individuals with dementia, it is essential that clinicians inquire about caregivers' perceived stress and perceived loneliness, are competent in supporting and educating caregivers, and are knowledgeable about specific resources for caregivers.

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Health utility scores of family caregivers for leukemia patients measured by EQ-5D-3L: a cross-sectional survey in China

Background: This study assessed the health related quality of life of family caregivers (FCs) of leukemia patients by using the health utility scores derived from the EuroQol five-dimensional (EQ-5D) questionnaire. Methods: A cross-sectional survey was undertaken on 306 family caregivers of leukemia patients to assess their health utility using the EQ-5D-3L. Participants were recruited from three hospitals in China's Heilongjiang province. The health utility scores of the participants were estimated based on the Chinese EQ-5D-3L value set and compared with those of the local general population. Factors predicting the health utility scores were identified through the Kruskal-Wallis analysis of variance and median regression analyses. Results: FCs had lower health utility scores than the general population (p < 0.001). The participants with a lower socioeconomic status had lower utility scores and reported more problems than those with a higher socio-economic status. Better family function and higher social support were associated with higher health utility scores. The type of leukemia, household income, and social support are significant predictors of health utility scores of the FCs. Chronic lymphocytic leukemia, low socio-economic status, and low social support are associated with lower health utility scores of the FCs. Conclusions: FCs for leukemia patients have lower health utility scores than the local general population, as measured by the EQ-5D-3L. There is an immediate need to address the health concerns of FCs, who play an important role in the Chinese health care system. 

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Distress in informal carers of the elderly in New Zealand

Aims: Informal care, which is unpaid and often provided by family and friends, is the primary source of aged care in New Zealand. In addition to financial costs there are known psychological costs of being a carer, including poor mental health.; Methods: This research aimed to interview a group of New Zealand carers and describe their rates of depression and anxiety, their motivations for providing care, costs of care and their experience of aggression. Interviews used standardised questions and were conducted over the phone.; Results: Results are reported from interviews of 48 carers and suggest this group have elevated symptoms of depression and anxiety. Most of the carers are partners or children of the carees and likely do the caring out of love. Unpaid family carers experience low levels of aggression. Carers reported personal and social restriction, and physical and emotional health the most burdensome aspect of being a carer.; Conclusions: Carers of the elderly in New Zealand show elevated levels of distress. Higher levels of emotional support are needed for New Zealand carers. If the health system continues to rely on unpaid carers more should be done to support them.

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Risky wandering behaviors of persons with dementia predict family caregivers' health outcomes

Objectives: To examine the relationships between dementia persons' risky wandering behaviors and family caregivers' physical and mental health. Methods: A secondary analysis was conducted using the original cross-sectional data from180 dyads. The Risky Wandering and Adverse Outcome model assessed behaviors of eloping and getting lost outside the house for dementia persons. Data were analyzed using descriptive statistics, Pearson's correlation coefficient and hierarchical regressions. Results: The mean age of caregivers was 56.01 years (SD = 13.8); 65% were female. Younger caregivers experienced greater physical fatigue and sleep disturbance. Presence of foreign helpers predicted a reduction in mental and physical fatigue of caregiver (β = −0.186, p <.05; β = 0.198, p <.05, respectively). Getting lost outside of the house influenced caregivers' mental fatigue (β = 0-0.215, p <.05); eloping behavior influenced caregivers' sleep disturbance (β = 0.231, p <.05). Care-receivers' activities of daily living affected caregivers' depressive symptoms (β = −0.179, p <.05). Conclusions: Dementia family caregiver physical and mental health problems have distinct predictors. Employing the Risky Wandering and Adverse Outcome model could inform policy makers regarding long-term care resources to improve dementia care.

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The Effects of the Perception of Being Recognized by Patients With Alzheimer Disease on a Caregiver's Burden and Psychophysical Health

Caring for a patient with Alzheimer disease (AD) represents a real challenge that can have considerable long-term psychological and physical consequences. The aim of this study was to evaluate the impact of the perception of being recognized on both the psychophysical health and the level of burden reported in caregivers of patients with AD. The secondary aim was to evaluate the association between the use of a home care assistance service and the burden and psychophysical health in caregivers. The Caregiver Burden Inventory (CBI), the 36-item Short-Form Health Survey (SF-36), and a visual analog scale (VAS) to evaluate the level of perception of being recognized were administered to 31 caregivers of patients with AD. Data were also collected from patients with AD using the Mini-Mental State Examination (MMSE). The level of perception of being recognized was significantly and negatively correlated with total burden ( r = -0.36; P = .045) and objective burden ( r = -0.53; P = .002). It was also significantly and positively correlated with the MMSE score ( r = 41; P = .02). Regression models showed that only the perception of being recognized, and not MMSE, significantly predicted lower caregiver objective burden scores. Furthermore, the use of a home care assistance service significantly predicted higher caregiver physical functioning. The perception of being recognized by an AD relative significantly predicted the caregiver's objective burden associated with a shortage of time. The use of a home care assistance service also resulted in a promotion in the caregiver's social functioning. Further studies are needed to confirm these results.

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Immediate and Lagged Effects of Daily Stress and Affect on Caregivers’ Daily Pain Experience

Purpose of the Study We examined the effect of daily stress, affect, and adult day service (ADS) use on the daily pain experience among caregivers of individuals with dementia (IWD). Participants were interviewed for 8 consecutive days. Caregivers utilized an ADS program on some days and provided care at home on other days. We hypothesized ADS use, care-related and noncare-related subjective stress, and affect would significantly influence and interact in ways to exacerbate or buffer the experience of daily pain. Design Participants were 173 family caregivers of IWDs using ADS more than 2 days per week. Participants with IWDs diagnosed with “mild cognitive impairment” were excluded. Daily telephone interviews assessed stress, affect, and pain. Methods Multilevel models were used to examine the relation between daily stress and daily pain and interaction effects of other daily experiences within the context of ADS use. Results Multilevel models revealed a significant relation between care-related subjective stress and daily bodily pain as well as an interaction between noncare-related subjective stress and daily bodily pain. ADS use and affect did not predict daily pain. Lagged effects revealed a significant interaction between yesterday’s ADS use and today’s positive affect on today’s bodily pain. Implications Findings suggest that further studies are warranted for understanding and controlling pain among caregivers. Addressing the physical health needs through pain management interventions, positive affect maximization, and ADS use may improve the overall wellbeing of caregiving dyads. 

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The Cost of Caring: Economic Vulnerability, Serious Emotional Distress, and Poor Health Behaviors Among Paid and Unpaid Family and Friend Caregivers

This study examined differences between paid and unpaid family/friend caregivers to better understand the consumer-driven caregiving workforce. We compared economic vulnerability, unhealthy behavior, and serious emotional distress for 475 paid and 10,500 unpaid family/friend informal caregivers from the 2009 California Health Interview Survey. We then estimated whether caregiver status moderated the relationship between economic vulnerability and health outcomes. Compared to unpaid family/friend caregivers, paid family/friend caregivers had a 27% greater risk ( p = .002) of economic vulnerability. Among all family/friend caregivers, the probabilities of serious emotional distress and unhealthy behaviors increased by >100% and 28% for those with the greatest compared to the least economic vulnerability, and caregiver type did not moderate these relationships. To address economic and health vulnerabilities of paid informal caregivers, policy makers might increase wages in consumer-driven programs. These changes could prove beneficial to both paid informal caregivers and their care recipients, while reducing long-term inefficiencies in consumer-driven programs.

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Correlating the Physical Activity Patterns of People with Moderate to Severe Multiple Sclerosis Disability and Their Family Caregivers

Purpose: People with multiple sclerosis (PwMS) and their family caregivers often react to the impact of the disease as an interdependent dyad. The aim of this exploratory study was to examine interdependence in the physical activity (PA) patterns of dyads affected by moderate to severe MS disability. Method: A total of 15 pairs of PwMS and their family caregivers wore accelerometers for 7 days. By collecting data simultaneously from both partners, we tested interdependence using the dyad as the unit of analysis. Results: PwMS and caregivers averaged 4,091.3 (SD 2,726.3) and 6,160.2 (SD 1,653.0) steps per day, respectively. The mean number of minutes per day of sedentary, light, and moderate to vigorous activity for PwMS was 566.3 (SD 97.7), 167.4 (SD 94.0), and 7.6 (SD 12.4), respectively, and 551.9 (SD 92.4), 199.6 (SD 63.4), and 21.4 (SD 18.2), respectively, for caregivers. Interdependence between dyads for sedentary, light, moderate to vigorous activity, and step count was low and non-significant (rs=0.20, 0.26, 0.13, and –0.27, respectively; p>0.05). Conclusions: Although our findings do not support the interdependence of PA between caregivers and care recipients with MS, they do show that both partners are not engaging in sufficient PA to achieve important health benefits. These findings are important because they indicate that the dyads are likely to benefit from interventions for changing PA behavior.

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Health Behavior Among Men With Multiple Family Roles: The Moderating Effects of Perceived Partner Relationship Quality

Men in the United States are increasingly involved in their children's lives and currently represent 40% of informal caregivers to dependent relatives or friends aged 18 years and older. Yet much more is known about the health effects of varying family role occupancies for women relative to men. The present research sought to fill this empirical gap by first comparing the health behavior (sleep duration, cigarette smoking, alcohol consumption, exercise, fast food consumption) of men who only occupy partner roles and partnered men who also fill father, informal caregiver, or both father and informal caregiver (i.e., sandwiched) roles. The moderating effects of perceived partner relationship quality, conceptualized here as partner support and strain, on direct family role-health behavior linkages were also examined. A secondary analysis of survey data from 366 cohabiting and married men in the Work, Family and Health Study indicated that men's multiple family role occupancies were generally not associated with health behavior. With men continuing to take on more family responsibilities, as well as the serious health consequences of unhealthy behavior, the implications of these null effects are encouraging - additional family roles can be integrated into cohabiting and married men's role repertoires with minimal health behavior risks. Moderation analysis revealed, however, that men's perceived partner relationship quality constituted a significant factor in determining whether multiple family role occupancies had positive or negative consequences for sleep duration, alcohol consumption, and fast food consumption. These findings are discussed in terms of their empirical and practical implications for partnered men and their families.;

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Vietnamese-American family caregivers of persons with mental illness: Exploring caregiving experience in cultural context

While involvement of family caregivers can play an important role in the recovery process of persons with serious mental illness (SMI), family caregivers often endure poor health and mental health issues due to caregiving-related distress. These challenges may be exacerbated for Vietnamese American families due to cultural values (e.g., familism and stigma). This qualitative exploratory study examined how Vietnamese American family caregivers of persons with SMI describe their caregiving experience. Using convenience and snowball sampling, the study recruited 21 participants who took part in two Vietnamese-language focus groups. Key findings of the study addressed three themes: (1) the influence of cultural and religious values on caregiving and mental health; (2) the negative impact of caregiving on caregivers’ wellbeing; and (3) the stigma attached to mental illness. The study offers useful insights to assist mental health practitioners in tailoring culturally appropriate and effective services for Vietnamese caregivers.

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The Impact of Informal Caregiving for Older Adults on the Health of Various Types of Caregivers: A Systematic Review

Objective: Informal care, the provision of unpaid care to dependent friends or family members, is often associated with physical and mental health effects. As some individuals are more likely to provide caregiving tasks than others, estimating the causal impact of caregiving is difficult. This systematic literature review provides an overview of all studies aimed at estimating the causal effect of informal caregiving on the health of various subgroups of caregivers.; Methodology: A structured literature search, following PRISMA guidelines, was conducted in 4 databases. Three independent researchers assessed studies for eligibility based on predefined criteria. Results from the studies included in the review were summarized in a predefined extraction form and synthesized narratively.; Results: The systematic search yielded a total of 1,331 articles of which 15 are included for synthesis. The studies under review show that there is evidence of a negative impact of caregiving on the mental and physical health of the informal caregiver. The presence and intensity of these health effects strongly differ per subgroup of caregivers. Especially female, and married caregivers, and those providing intensive care appear to incur negative health effects from caregiving.; Conclusion: The findings emphasize the need for targeted interventions aimed at reducing the negative impact of caregiving among different subgroups. As the strength and presence of the caregiving effect differ between subgroups of caregivers, policymakers should specifically target those caregivers that experience the largest health effect of informal caregiving.;

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The effects of leisure on stress and health of family caregivers

The number of older adults is projected to grow significantly by 2050. Predictions also suggest that living longer but not healthier lives will increase the demand for family caregivers as well. Regrettably, caregivers in comparison with noncaregivers will likely continue to experience higher levels of stress, poorer health, and increased propensity for using unhealthy behaviors to address their stress. This study used mediation analysis to examine the relationship among 3 leisure variables, perceived stress, and self-reported general health (SRGH) of family caregivers (n = 240) who completed an online survey. Results indicated that individually, each of the 3 leisure variables was positively associated with higher SRGH. Results also showed that perceived stress significantly predicted SRGH. Of greater significance, however, was the observation that perceived stress was significantly predicted by both satisfaction with time for leisure and satisfaction with the quality of the leisure experience but not by leisure participation. Thus, the variables that addressed caregivers' satisfaction with both the time for leisure and with the quality of the leisure experience were more effective than mere leisure participation to reduce perceived stress and ultimately provide better self-reports of health. These results are consistent with the literature about the ability of leisure to cope with stress. More importantly, they provide strong support for the design and implementation of interventions to help caregivers develop meaningful leisure-based activities to reduce perceived stress.

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Implications of the use of migrant care work and web-based services on family caregivers' health

This article illustrates the implications of two recent trends on family carers' health: the employment of home-based migrant care workers; and the provision of web-based supports. The main factors traditionally associated with carers' health are used to analyse the results of a six-country study via a multilevel linear regression. Attention will be dedicated to the role of migrant care workers, who are often hired by private households to provide eldercare. Finally, web-based services for carers will be investigated by considering InformCare, a recently implemented European platform tested on a sample of carers from three countries (Germany, Italy and Sweden).

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Informal caregiving and markers of adiposity in the UK Household Longitudinal Study

OBJECTIVES: The aim was to investigate associations between caregiving and adiposity using a representative UK longitudinal study. We also investigated whether associations differed by age, gender and caregiving characteristics. METHODS: Data on 9,421 participants aged 16+ from three waves (2009-2012) of the UK Household Longitudinal Study were used. Body mass index, waist circumference and percentage body fat were assessed. Caregiving and caregiving characteristics (hours per week, number of people cared for, co-resident caregiving and combining working and caregiving) was available from the prior wave. Gender-stratified associations between caregiving/caregiving characteristics with adiposity were tested. Covariates included caregiver's health, socioeconomic position, parenthood and partnerships. RESULTS: Caregiving was associated with higher adiposity for women but not men. Younger women caregivers had particularly higher levels of adiposity. Men combining part-time paid work with caregiving had higher levels of adiposity than men working full-time and not caregiving. Women aged 16-44 or 65+ had particularly high levels of adiposity when combining full-time work and caregiving, compared to full-time work alone. CONCLUSION: The health of caregivers should be a public health priority, particularly for younger women and those combining paid work with caregiving responsibilities. 

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Bringing the Family in through the Back Door: the Stealthy Expansion of Family Care in Asian and European Long-Term Care Policy

In the era of global ageing, amid political concerns about increasing care needs and long-term sustainability of current care regimes, most high-income economies are seeking to minimise the use of institutional care and to expand formal home care for their older populations. In long-term care reforms, concerns about public funding, formal providers and the paid care workforce are foremost. However, an integral yet hidden part of all these reforms is the stealthily growing role of family carers. This article aims to identify and spell out how developments in formal home care bring about different modes of increasing, encouraging and necessitating family care inputs, across welfare states. Using secondary sources, three different modes were identified, and the article outlines the logic of each mechanism, drawing on illustrative examples of policy dynamics in both European and Asian countries. Family care inputs have increased through policy changes that are not explicitly or primarily about family care, but rather about expansion or changes in formal care. In some cases, this is explicit, in other cases something that happens 'through the back door'. Nonetheless, in all cases there are implications for the family caregivers' time, health and employment options. Future studies are needed to examine longitudinal trends from a comparative perspective to confirm our findings and elucidate how government commitments to formal home care provision and financing interact with the changing nature and volume of family caregiving.

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Association of informal caregiver distress with health outcomes of community‐dwelling dementia care recipients: a systematic review

Background: Most dementia care occurs in the community with support from informal caregivers who are often distressed. Dementia caregiver distress is known to be hazardous to the caregiver's health, but the impact on the dementia care recipient is not well known. Methods: the Medline, Embase, PsycINFO, CINAHL, and Cochrane databases were searched from inception until June 2017 for studies investigating the association of informal caregiver distress with health outcomes of community‐dwelling dementia care recipients. The search results were screened and then data abstracted, and the risk of bias was appraised independently by pairs of reviewers. Results: 81 original investigations were included (n = 43 761 caregivers and dementia care recipients). Sixty‐six studies (81.5%) were observational or cross‐sectional in design, and 47 studies (58%) had a low risk of bias. There was considerable clinical and methodological heterogeneity precluding quantitative synthesis. Dementia care recipients (n = 21 881) had a mean age of 78.2 years (SD ± 3.8 y), half (50.0%) were women, and two‐thirds (66.1%) had Alzheimer's disease. The dementia caregivers (n = 21 880) had a mean age of 62.5 years (SD ± 23.3), three‐quarters (74.1%) were women, and one‐half (50.5%) were spouses of the dementia care recipient. Twenty‐two unique dementia care recipient outcomes were studied including cognition, mood, quality of life, function, healthcare utilisation, and costs. Overall, informal caregiver distress is commonly associated with the institutionalization of the dementia care recipient, worsening behavioural and psychological symptoms of dementia, and experiencing elder abuse. Conclusion: Informal caregiving is a cornerstone of dementia care, and distress related to this role is associated with worsening of several dementia care recipient health outcomes. It is important that clinicians and researchers worldwide consider the broader consequences of caregiver distress.

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Social support and self-rated health of African American women informal caregivers: urban and rural differences

In this study, the authors examined how geographic location might differently influence social support and self-rated health for rural and urban African American women caregivers. They used cross-sectional data from 253 urban and 263 rural women primary caregivers. Controlling for key demographic factors, the authors regressed caregivers’ self-rated health on social engagement, structural, and functional aspects of social support for urban and rural caregivers separately. The perception of family functioning was positively associated with urban and rural caregivers’ self-rated health. Urban caregivers reported having significantly more contact with their family and more informal helpers compared to rural caregivers. Furthermore, church attendance, a measure of social engagement, was significant for urban caregivers’ self-rated health, but not rural caregivers. The study findings affirmed the importance of foregrounding context and disaggregating social support, and point to the need for interventions targeting family functioning and paying attention to geographic location.

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Understanding the needs of caregivers of persons with dementia: a scoping review

Background: The number of people living with dementia (PWD) is increasing worldwide, corresponding with an increasing number of caregivers for PWD. This study aims to identify and describe the literature surrounding the needs of caregivers of PWD and the solutions identified to meet these needs. Method: A literature search was performed in: PsycInfo, Medline, CINAHL, SCIELO and LILACS, January 2007–January 2018. Two independent reviewers evaluated 1,661 abstracts, and full-text screening was subsequently performed for 55 articles. The scoping review consisted of 31 studies, which were evaluated according to sociodemographic characteristics, methodological approach, and caregiver’s experiences, realities, and needs. To help extract and organize reported caregiver needs, we used the C.A.R.E. Tool as a guiding framework. Results: Thirty-one studies were identified. The most common needs were related to personal health (58% emotional health; 32% physical health) and receiving help from others (55%). Solutions from the articles reviewed primarily concerned information gaps (55%) and the education/learning needs of caregivers (52%). Conclusion: This review identified the needs of caregivers of PWD. Caregivers’ personal health emerged as a key area of need, while provision of information was identified as a key area of support. Future studies should explore the changes that occur in needs over the caregiving trajectory and consider comparing caregivers’ needs across different countries.

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Transitioning into spousal caregiving: contribution of caregiving intensity and caregivers’ multiple chronic conditions to functional health

Background: Both caregiving intensity and caregivers’ multiple chronic conditions (MCCs) are important aspects of caregiving that might affect the health and well-being of older spousal caregivers, but few investigations have simultaneously modelled their impact during the transition into spousal caregiving. Objective: To examine the differential effects of caregiving intensity and caregivers’ MCCs on functional health over time among individuals entering the spousal caregiver role. Methods: A total of 1,866 non-caregivers at the baseline were followed over a 4-year period (2011–2015). The effects of transitioning into caregiving (transitioned into low-intensity and transitioned into high-intensity versus never-caregiver) and caregivers’ MCCs (reported before and during the transitioning period versus no MCCs) on functional health at the follow-up were estimated using mixed-effects regression models. Results: Transitioning into spousal caregiving was associated with a decline in functional health, particularly for those transitioned into high-intensity caregiving, and for those who reported MCCs when transitioning into the caregiver role. The association between transitioning into spousal caregiving and functional decline was strongest for high-intensity caregivers reporting MCCs when transitioning into caregiving, followed by low-intensity caregivers reporting MCCs when transitioning into caregiving. Conclusion: The results highlight the contribution of transitioning into high-intensity caregiving and caregivers’ MCCs to the functional health decline of spousal caregivers. Caregiver support interventions should target spousal caregivers who have newly entered a demanding caregiving role; clinical attention should be emphasised for the development of caregivers’ own MCCs coinciding with the transitioning period.

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Caring for an individual with mild cognitive impairment: a qualitative perspective of health-related quality of life from caregivers

Objectives: Little is known regarding the effect that caring for an individual with Mild Cognitive Impairment (MCI) has on health-related quality of life (HRQOL). The authors sought to identify the most important aspects of HRQOL related to caring for an individual with MCI. Methods: Six focus groups were conducted with caregivers of individuals with MCI (n = 32). Qualitative frequency analysis was used to analyze the data. Results: Findings indicated that caregivers most frequently discussed social health, including changes in social roles and an increased need for social support (51.2% of the total discussion). This was followed by mental health concerns (37.9%) which centred on anger/frustration, and a need for patience in the caregiving role, as well as caregiver-specific anxiety. Other topics included physical health (10.0%; including the impact that stress and burden have on medical heath), and caregivers’ cognitive health (0.9%; including memory problems in relation to caregiver strain, sleep disruption, and cognitive fatigue). Conclusions: Findings illustrate the multiple domains of HRQOL that are affected in individuals providing care for someone with MCI. Moreover, the findings highlight the need for extending support services to MCI caregivers, a group that is typically not offered support services due to the ‘less severe’ nature of an MCI diagnosis.

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Predicting personal self-care in informal caregivers

Caregiver research often focuses on negative health outcomes, yet little is known about the self-care practices of caregivers. The present study investigates self-care practices among family caregivers and the relationships between personal self-care, perceived stress, and other health variables. Data were collected from informal caregivers through self-administered Internet and paper surveys that included the Medical Outcomes Study Short Form 36-item Health Survey, Perceived Stress Scale, and Self-Care Practices Scale. Personal self-care was most strongly associated with emotional well-being, pain, perceived stress, and general health. The relevance of study findings to strengthening family caregiver programs and future research is discussed. 

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Health effects of informal caring in New Zealand: longitudinal findings from the Health, Work and Retirement study

This study investigates changes in the mental and physical health of carers compared to non-carers over 10 years in a sample of New Zealanders aged 54–70. Mental health increased slightly over time for all participants but there was no difference in trajectory change based on carer status except for those who stopped caring. No significant differences in physical health or differences in trajectory change for physical health across time based on caregiver status were found. Results provide some support for a health selection bias into caring and the adaptation hypothesis of caring across time.

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Variation of Caregiver Health and Mortality Risks by Age: A Census-Based Record Linkage Study

Due to the focus of studies about caregiving responsibilities on older caregivers, there has been a deficit of research on young caregivers. We aimed to investigate the association between caregiving and health/mortality risk in young caregivers when compared with their noncaregiving peers and older caregivers. A census-based record linkage was implemented, linking all residents enumerated in the 2011 Northern Ireland Census with subsequently registered deaths data, until the end of 2015. Among those aged 5–24 years at the 2011 Census, approximately 4.5% (19,621) of the cohort reported that they were caregivers. The presence of a chronic physical condition (such as mobility difficulties) and/or mental health condition was measured through the Census; all-cause mortality was assessed by official mortality records. Young caregivers were less likely than their noncaregiving peers to report chronic mobility problems (adjusted odds ratio (OR) = 0.84, 95% confidence interval (CI): 0.73, 0.96) but more likely to report chronic poor mental health (adjusted OR = 1.44, 95% CI: 1.31, 1.58). They also differed from older caregivers (P < 0.001) and were at significantly higher mortality risk than their peers (adjusted hazard ratio = 1.54, 95% CI: 1.10, 2.14). A dose-response relationship between hours devoted to caregiving duties and mortality risk was evident. We found that young caregivers were at significantly increased risk of poor health outcomes.

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"I just don't focus on my needs." The unmet health needs of partner and offspring caregivers of people with dementia: A qualitative study

Background Family caregivers of people with dementia have significant unmet health needs. There is a lack of research that differentiates between the needs that are specifically relevant to partner and offspring caregivers. Objective The aim of this study was to examine the health needs of partner and offspring caregivers of older people with dementia, including the barriers they experience in meeting their needs. Method Semi-structured interviews were conducted with 24 family caregivers of community-dwelling people with dementia. Of these, 12 were partner caregivers (4 men, 8 women) and 12 were offspring caregivers (2 men, 10 women). The interviews were transcribed and analysed using thematic analysis. Results Five themes were identified within the data. The first theme represents caregivers' overall assessment and perception of their health needs. The remaining four themes represent the most important aspects of caregivers' health needs; mental health, emotional support and social relationships, healthy diet and exercise, and personal time. While these themes were similar for offspring and partner caregivers, the specific needs and barriers within these areas were different. A prominent barrier for partner caregivers was that they had difficulty in acknowledging their needs. Despite this, partner caregivers demonstrated unmet emotional support needs, as they no longer had emotional support from their partner with dementia. They also had an unmet need for time away from the care-giving role, yet they were reluctant to leave the person with dementia. Offspring caregivers' unmet health needs were easily identified and were focused on their unmet mental health needs and feeling socially isolated. These unmet mental health and social support needs were related to their unmet health needs in other areas such as exercise, diet and having time to themselves. Conclusion Caregivers have significant unmet needs and these are often complex, multidimensional, and they often differ between partner and offspring caregivers. Gaining a more detailed understanding of the needs and barriers that are particularly relevant to either partner or offspring caregivers will assist in the development of interventions that are tailored to the unique needs of caregivers.

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Differences in risk factors and chronic conditions between informal (family) carers and non-carers using a population-based cross-sectional survey in South Australia

Background There is growing discussion on the impact of informal caregiving on the health status and morbidity of family carers. Evidence suggests a proportion of carers may be at risk of poor health outcomes. However, there are limited population-based studies that provide representative data on specific risk factors among carers (eg, blood pressure, cholesterol, smoking status, activity and body mass index) and major chronic conditions (eg, asthma, diabetes and arthritis). This study aimed to redress that imbalance. Method Self-reported data were from the South Australian Monitoring and Surveillance System (SAMSS), a representative cross-sectional state-wide population-based survey of 600 randomly selected persons per month. SAMSS uses computer-assisted telephone interviewing (CATI) to monitor chronic health-related problems and risk factors and to assess health outcomes. In total, 2247 family carers were identified from 35 195 participants aged 16 years and older for the 5-year period from 2010 to 2015. Logistic regression analyses examined associations of being a carer with self-reported chronic diseases and health risk factors. In addition, the population attributable risk (PAR) of being a carer was examined for selected chronic conditions. Results The prevalence of carers was 6.4%, and peak age group for carers was 50–59 years. Adjusted ORs for chronic conditions in carers were significant for all chronic conditions examined. Although there is a high prevalence of self-reported risk factors and chronic conditions among carers compared with non-carers at the population level, PAR findings suggest that caregiving is associated with a small to moderate increased risk of having these chronic conditions. Conclusions Monitoring of carer health and morbidity particularly ‘at risk’ individuals such as female carers with asthma or diabetes remains important and provides an ongoing baseline for future surveys. To achieve this, caregiver-based studies need to become part of mainstream biomedical research at both epidemiological and clinical levels.

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Caregiving Stress Among American Indians With Type 2 Diabetes: The Importance of Awareness of Connectedness and Family Support

American Indian (AI) communities experience a disproportionate rate of Type 2 diabetes (T2D) and cumulative exposure to stress. Although this link is well researched among various populations, it has not been examined among AI communities. Path analysis was used to examine a multiple-mediator model to explain how caregiver stress influences self-reported mental and physical health among 100 AI participants with T2D. Caregiver stress was negatively associated with physical and mental health. Physical health was positively associated with family/community connectedness and mental health was positively associated with both family support and connectedness. The relationship between caregiver stress and mental health was partially mediated by family/community connectedness; caregiver stress had no indirect effects on physical health via either hypothesized mediator. Findings demonstrate the importance of integrating individuals’ connection to family and community and its influence on caregiver stress and mental health in intervention programs targeting diabetes management and care among AI communities.

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Psychological morbidity and general health among family caregivers during end-of-life cancer care: A retrospective census survey

Background: Family carers provide vital support for patients towards end-of-life, but caregiving has considerable impact on carers’ own health. The scale of this problem is unknown, as previous research has involved unrepresentative samples or failed to fully capture caregiving close to death. Aim: To quantify level of psychological morbidity and general health among a census sample of carers of people with cancer at end-of-life, compared to population reference data. Design: National 4-month post-bereavement postal census survey of family carers of people who died from cancer, retrospectively measuring carers’ psychological health (General Health Questionnaire-12) and general health (EuroQoL EQ-Visual Analogue Scale) during the patient’s last 3 months of life. Participants: N = 1504 (28.5%) of all 5271 people who registered the death of a relative from cancer in England during 2 weeks in 2015 compared with data from the Health Survey for England 2014 (N = 6477–6790). Results: Psychological morbidity at clinically significant levels (General Health Questionnaire-12 ⩾4) was substantially higher among carers than the general population (83% vs 15%), with prevalence five to seven times higher across all age groups. Overall, carers’ general health scores were lower than population scores, median 75 (interquartile range, 50–80) versus 80 (interquartile range, 70–90), but differences were more marked at younger ages. Female carers had worse psychological morbidity and general health than male carers. Conclusion: Levels of psychological morbidity among family carers during end-of-life caregiving are far higher than indicated by previous research, indicating a substantial public health problem. Consistent assessment and support for carers to prevent breakdown in caregiving may produce cost savings in long term.

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Caregiving alters immunity and stress hormones: a review of recent research

Older caregivers of dementia patients have been studied as a model of chronic stress influencing psychological and physical well-being and the function of the immune system. These immune decrements can relate to altered stress hormone levels, and caregivers show elevated or reduced cortisol compared to age-matched controls as well as dysregulation in other cortisol indices. Recently, this field has developed to examine a range of immune outcomes and cortisol measures in younger caregivers too, as well as other potential underlying mechanisms including genetic variation, acute stress reactivity and inflammation. Several interventions have also been trialled to reduce the negative physical impact of caregiving stress. This paper reviews the latest developments in the field and gives suggestions for future research.

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Recovery for Carers of People with Psychosis: A Longitudinal Population-Based Study with Implications for Social Work

This longitudinal study using the sampling frame of the second Australian prevalence study of psychosis aimed to identify predictors of the health and well-being of care-givers of people with psychosis and inform social work recovery-oriented practice. Ninety-eight carers were recruited at baseline and seventy-eight re-interviewed after one year. Correlational and regression analyses were conducted to identify relationships between carer and service user-related factors and predictors of carers’ health and well-being over time. Carers’ poor health and well-being were predicted by a combination of specific service user-related characteristics and care-giving factors. Carers’ assessment of the functioning of their relative/friend with psychosis at baseline had stronger relationships with their own health and well-being at follow-up than other factors. Carers’ care-giving burden was predicted by their educational levels and their relative/friend’s cognitive levels over time. To achieve improved health and well-being for carers, services need to consider potential deterioration of carers’ physical health over time, to facilitate appropriate referral of carers with physical health problems and provide psycho-social rehabilitation services to improve the functioning of people with psychosis. Findings provide some evidence to support social work recovery-oriented practice in working with people with psychosis and the routine inclusion of carers in such interventions.

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Informal Caregivers of Cancer Patients: Review of Interventions, Care Activities, and Outcomes

Family and friends are important resources for patients during cancer treatment and warrant an expanded review of not only what they contribute to patient care but also the support they need and the personal consequences of caregiving. A review of 14 randomized controlled trials published between 2009 and 2016 was completed utilizing the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. The results of this review expand the scope of what is known regarding relationships among supportive interventions for caregivers, activities performed to care for cancer patients, caregiver characteristics, and health outcomes of caregivers. Specific results include (a) updated synthesis of literature associated with variables important to caregiving, (b) attention to interventions designed to support caregivers, (c) classification of specific activities caregivers perform for cancer patients, (d) identification of caregiver characteristics associated with specific care activities, (e) inconsistencies in measurement of care activities, and (f) minimal reporting of outcome variables.

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Development and validation of a screener based on interRAI assessments to measure informal caregiver wellbeing in the community

Background :Informal caregivers are invaluable partners of the health care system. However, their caring responsibilities often affect their psychological wellbeing and ability to continue in their role. It is of paramount importance to easily identify caregivers that would benefit from immediate assistance. Methods: In this nonexperimental cohort study, a cross-sectional analysis was conducted among 362 informal caregivers (mean age 64.1 years, SD ± 13.1) caring for persons with high care needs (mean age 78.6 years, SD ± 15.0). Caregivers were interviewed using an interRAI-based self-reported survey with 82 items covering characteristics of caregivers including key aspects of wellbeing. A factor analysis identified items in the caregiver survey dealing with subjective wellbeing that were compared against other wellbeing measures. A screener, called Caregiver Wellbeing Index (CWBI), consisting of four items with response scores ranging from 0 to 2 was created. The CWBI was validated in a follow-up study in which 1020 screeners were completed by informal caregivers of home care clients. Clinical assessments of the care recipients (n = 262) and information on long-term care home (LTCH) admission (n = 176) were linked to the screener dataset. The association between the CWBI scores and caregiver and care recipient characteristics were assessed using logistic regression models and chi-square tests. The reliability of CWBI was also measured. Results: The CWBI scores ranging from zero to eight were split in four ‘wellbeing’ levels (excellent, good, fair, poor). In the validation study, fair/poor psychological wellbeing was strongly associated with caregiver reports of inability to continue in their role; conflict with family; or feelings of distress, anger, or depression (P < 0.0001). Caregivers caring for a care recipient that presented changes in behavior, cognition, and mood were more likely to present fair/poor wellbeing (P < 0.0001). Additionally, caregivers with high CWBI scores (poor wellbeing) were also more likely to provide care for someone who was admitted to a LTCH (OR 3.52, CI 1.32–9.34) after controlling for care recipient and caregiver characteristics. The Cronbach alpha value 0.89 indicated high reliability. Conclusion: The CWBI is a valid screener that can easily identify caregivers that might benefit from further assessment and interventions.

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In sickness and in health: The strains and gains of caring for a chronically ill or disabled spouse

Objectives To examine the subjective experiences of spousal carers, focusing on positive, negative, and relational aspects of this role. Methods Mixed-methods exploratory study involving questionnaires (N equals 40) and in-depth interviews (N equals 8) with spousal carers in the southwest of England. Results Participants used a combination of negative and positive terms to describe their experiences, with the cared-for spouse's mental acuity, behavior towards the carer, and amount of care required, impacting on carers' subjective experience. Women were more likely to report neglecting their own health because of being a carer (p equals 0.02). The marital relationship itself was highly significant, and many carers took special measures to maintain and develop their marital bonds. Carers adapted to their roles in various ways, with those finding acceptance of their situation and accessing support appearing to cope best with the demands of the role. Discussion This study, though based on a small and geographically restricted sample, offers insight into the positive, negative, and relational experiences of spousal carers. Support that encourages carers to engage in health-promoting activities, and ideally provides opportunities for both partners to be involved in such activities together, may be particularly beneficial. 

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Caregivers for older adults: Prevalence, characteristics, and health care utilization and expenditures

The purpose of this study was to provide an overview of caregiver prevalence and characteristics and to estimate the impact of caregiving on health care utilization and expenditures among AARP® Medicare Supplement insureds to inform caregiver intervention strategies. A subgroup with live-in partners was used to investigate the additional effect of live-in health status on caregiver health. Multivariate regression models were utilized to determine caregivers' characteristics and associated impacts on their health care utilization and expenditures. Among respondents (n = 18,928), 14.9% self-identified as caregivers. The strongest characteristics included being younger, healthier, but reporting depression or loneliness. Caregivers of sicker live-ins were female, older and indicated moderate loneliness caregivers of healthier live-ins were younger, healthier, but reported severe loneliness. Caregivers had significantly lower inpatient admissions and medical and prescription drug expenditures. These results indicated an adverse impact on psychological health associated with caregiving but no evidence of a negative impact on physical health. 

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Caregiving setting and Baby Boomer caregiver stress processes: Findings from the National Study of Caregiving (NSOC)

The aim of this study was to provide a comprehensive understanding of how the caregiving setting relates to caregiving experience among Baby Boomer caregivers (CGs). Based on a secondary data analysis (the National Study of Caregiving, N = 782), compared with CGs providing care to an older adult living in the community, CGs to older adults in non-NH residential care settings reported better emotional well-being, self-rated health, and relationship quality and less provision of assistance older adults with daily activities. While chronic conditions, relationship quality, and financial strain were associated with the health and well-being for both CC groups, degree of informal support was more consequential for the health of CGs providing care to older adults in the community. Our results provide critical information on the risk factors and areas of intervention for both CG groups. 

Physical health and mental illness: listening to the voice of carers

Background: Shortened life expectancy of people with mental illness is now widely known and the focus of research and policy activity. To date, research has primarily reflected perspectives of health professionals with limited attention to the views and opinions of those most closely affected. The voice of carers is particularly minimal, despite policy stipulating carer participation is required for mental health services. Aim: To present views and opinions of carers regarding physical health of the people they care for. Methods: Qualitative exploratory. Two focus groups and one individual interview were conducted with 13 people identifying as carers of a person with mental illness. Research was conducted in the Australian Capital Territory. Data analysis was based on the thematic framework of Braun and Clarke. Results: Two main themes were interaction between physical and mental health; and, carers’ own physical and mental health. Participants described the impact of mental illness and its treatments on physical health, including their own. Conclusions: Carers are acknowledged as crucial for the delivery of high quality mental health services. Therefore they have an important role to play in addressing the poor physical health of people with mental illness. Hearing their views and opinions is essential.

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Helping lay carers of people with advanced cancer and their GPs to talk: an exploration of Australian users' views of a simple carer health checklist

The lay caregiving role is integral to advanced cancer care but places carers' health at risk. A supportive General Practitioner (GP) can help primary lay carers manage their health, if they disclose their concerns. A Needs Assessment Tool for Caregivers (NAT-C) was developed for carers to self-complete and use as the basis of a GP consultation, then tested in a randomised controlled trial. This paper reports a qualitative research study to determine the usefulness and acceptability of the NAT-C in the Australian primary care setting. Convenience samples of 11 carers and 5 GPs were interviewed between September 2010 and December 2011 regarding their experiences with and perceptions of the NAT-C. Open-ended questions were used, and the transcripts were analysed qualitatively to identify themes and patterns. Three major themes were identified: (a) Acceptability of the intervention (b) Impact of the intervention on the GP-patient relationship and (c) Place of the intervention in advanced cancer care. This simple checklist was acceptable to carers, although some were uncertain about the legitimacy of discussing their own needs with their GP. Carer-patients could not be certain whether a GP would be willing or equipped to conduct a NAT-C-based consultation. Such consultations were acceptable to most GPs, although some already used a holistic approach while others preferred brief symptom-based consultations. Although the NAT-C was acceptable to most carers and GPs, supportive consultations take time. This raises organisational issues to be addressed so carers can seek and benefit from their GP's support.

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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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Care-related Quality of Life of informal caregivers of the elderly after a hip fracture

Background: Reforms in the Dutch healthcare system in combination with the aging of the population will lead to a strong increase in the demand for informal care in the Netherlands. A hip fracture is one of the most important causes of hospital admissions among frail elderly and informal caregivers experience stress that may have significantly negative impact on the caregivers’ Quality of Life. The purpose of the study was to determine the nature, intensity and the care-related Quality of Life (CarerQoL) of informal caregivers of elderly patients in the first six months after a hip fracture. In this cross-sectional study, were interviewed the primary informal caregivers of patients with a hip fracture about the informal care provided after one, three or six months following the injury. The CarerQoL of the informal caregivers was measured with the CarerQoL-7D instrument. Results: In total, 123 primary informal caregivers were included. The CarerQoL-7D score was on average 83.7 (SD 15.0) after one, three and six months, and there were no major differences between the measurement time points. The average amount of informal care provided per patient per week was 39.5 during the first six months. Partners of patients with a hip fracture provided significantly more hours of informal care (β 34.0; 95% CI: 20.9 – 47.1). Female informal caregivers stated a significantly lower level of CarerQoL (β -7.8; 95% CI: -13.3 – -2.3). Female caregivers were 3.0 times more likely to experience relational problems (aOR 3.02; 95% CI 1.08-8.43). Caregivers provided care at 6 months were associated with physical health problems (aOR 2.54; 95% CI 1.05-6.14). Conclusions: Informal caregivers, especially partners, are faced with providing care of greater intensity to elderly patients during the first six months after a hip fracture. The CarerQoL was not associated with the intensity of the provided informal care. However, this study shows that a considerable group of informal caregivers for elderly patients with a hip fracture experienced relational, physical and mental health problems that stemmed from providing intensive informal care during the first six months.

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Effectiveness of psychoeducational interventions for family carers of people with psychosis: A systematic review and meta-analysis

Psychoeducational interventions for family carers of people with psychosis are effective for improving compliance and preventing relapse. Whether carers benefit from these interventions has been little explored. This systematic review investigated the effectiveness of psychoeducation for improving carers' outcomes, and potential treatment moderators. We searched for randomised controlled trials (RCTs) published in English or Chinese in eight databases. Carers' outcomes included wellbeing, quality of life, global morbidities, burden, and expressed emotion. Thirty-two RCTs were included, examining 2858 carers. Intervention duration ranged from 4 to 52weeks, and contact times ranged from 6 to 42hours. At post intervention, findings were equivocal for carers' wellbeing (SMD 0.103, 95% CI −0.186 to 0.392). Conversely, psychoeducation was superior in reducing carers' global morbidities (SMD −0.230, 95% CI −0.386 to −0.075), perceived burden (SMD −0.434, 95% CI −0.567 to −0.31), negative caregiving experiences (SMD −0.210, 95% CI −0.396 to −0.025) and expressed emotion (SMD −0.161, 95% CI −0.367 to −0.045). The lack of available data precluded meta-analysis of outcomes beyond short-term follow-up. Meta-regression revealed no significant associations between intervention modality, duration, or contact time and outcomes. Further research should focus on improving carers' outcomes in the longer-term and identifying factors to optimise intervention design.

  • Wellbeing and other outcomes of carers of individual with psychosis lack research
  • Psychoeducation improves carers' global morbidity, as a proxy measure to wellbeing.
  • Psychoeducation ameliorates caregiving-related outcomes, in particular burden.
  • 78% studies used group format, mean duration 20weeks, mean contact time 17h.
  • No significant associations identified between intervention factors and outcomes.
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Mental and physical health correlates among family caregivers of patients with newly-diagnosed incurable cancer: a hierarchical linear regression analysis

Purpose: Caregiver, relational, and patient factors have been associated with the health of family members and friends providing care to patients with early-stage cancer. Little research has examined whether findings extend to family caregivers of patients with incurable cancer, who experience unique and substantial caregiving burdens. We examined correlates of mental and physical health among caregivers of patients with newly-diagnosed incurable lung or non-colorectal gastrointestinal cancer. Methods: At baseline for a trial of early palliative care, caregivers of participating patients (N = 275) reported their mental and physical health (Medical Outcome Survey-Short Form-36); patients reported their quality of life (Functional Assessment of Cancer Therapy-General). Analyses used hierarchical linear regression with two-tailed significance tests. Results: Caregivers’ mental health was worse than the U.S. national population (M = 44.31, p < .001), yet their physical health was better (M = 56.20, p < .001). Hierarchical regression analyses testing caregiver, relational, and patient factors simultaneously revealed that younger (B = 0.31, p = .001), spousal caregivers (B = −8.70, p = .003), who cared for patients reporting low emotional well-being (B = 0.51, p = .01) reported worse mental health; older (B = −0.17, p = .01) caregivers with low educational attainment (B = 4.36, p < .001) who cared for patients reporting low social well-being (B = 0.35, p = .05) reported worse physical health. Conclusions: In this large sample of family caregivers of patients with incurable cancer, caregiver demographics, relational factors, and patient-specific factors were all related to caregiver mental health, while caregiver demographics were primarily associated with caregiver physical health. These findings help identify characteristics of family caregivers at highest risk of poor mental and physical health who may benefit from greater supportive care.

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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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Well-being of Sibling Caregivers: Effects of Kinship Relationship and Race

Purpose of the Study: This study examined whether caregiving has a differential effect on the well-being of sibling caregivers relative to other caregiving groups and whether race moderates this effect. Design and Methods: Using the National Survey of Midlife Development in the United States, 631 family caregivers (including 61 sibling caregivers) and 4,944 noncaregivers were identified. Hierarchical regression analyses were conducted to estimate the effect of the caregiver-care recipient relationship and its interaction with race on caregivers’ well-being (i.e., depressive symptoms, self-rated health, life satisfaction, and perceived control over life). Results: Caregivers in general reported poorer well-being than noncaregivers, but sibling caregivers were less affected by caregiving than parent or spouse caregivers. Among sibling caregivers, caregiving took a significantly greater toll on non-Hispanic White caregivers than those from minority groups with respect to depressive symptoms and life satisfaction. Implication: The findings suggest that the experience of sibling caregivers is significantly shaped by their cultural background.

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The impact of spinal cord injury on the quality of life of primary family caregivers: a literature review

STUDY DESIGN: Literature review. OBJECTIVES: To provide a detailed review of the literature regarding the impact of spinal cord injury (SCI) on the quality of life (QOL) of family members who have become the primary caregiver and to highlight potential interventions available.METHODS: Appropriate databases were searched for relevant peer-reviewed studies. Twenty-five studies (four qualitative and 21 quantitative) were identified which investigated the role that family members play in caring for people with SCI and the impact it has on their QOL. RESULTS: Depression, anxiety, physical symptoms and reduced satisfaction with life in primary family caregivers of patients with SCI were commonly reported across the literature. Isolation, loss of identity and role changes were also regularly reported as negative outcomes of caregiving for someone with an SCI. A range of interventions (including family training, problem-solving training and support groups) have been shown to have benefits for family caregivers' QOL. CONCLUSION: SCI impacts significantly on the QOL of family caregivers, with major implications for physical, mental and social aspects of caregiver health. This review highlights that these important issues are problematic internationally and may persist over several decades. The need for focused interventions to support family caregivers of spinal cord injured persons, with particular emphasis on increasing patient/family education and access to support groups, is recommended.

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Informal employment, unpaid care work, and health status in Spanish-speaking Central American countries: a gender-based approach

To assess the relationship between paid work, family characteristics and health status in Central American workers; and to examine whether patterns of association differ by gender and informal or formal employment.Cross-sectional study of 8680 non-agricultural workers, based on the First Central American Survey of Working Conditions and Health (2011). Main explicative variables were paid working hours, marital status, caring for children, and caring for people with functional diversity or ill. Using Poisson regression models, adjusted prevalence ratios of poor self-perceived and mental health were calculated by sex and social security coverage (proxy of informal employment).A clear pattern of association was observed for women in informal employment who were previously married, had care responsibilities, long working hours, or part-time work for both self-perceived and mental health. No other patterns were found.Our results show health inequalities related to unpaid care work and paid work that depend on the interaction between gender and informal employment. To reduce these inequalities suitable policies should consider both the labor (increasing social security coverage) and domestic spheres (co-responsibility of care).

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Pilot testing of the "First You Should Get Stronger" program among caregivers of older adults with dementia

Objective: In this study, randomized controlled interventional study pattern was used to examine the effects of the “First You Should Get Stronger” program on the caregiving burden and healthy life style behavior of caregivers of dementia patients. Methods: “Zarit Caregiver Burden Scale” and “Healthy Life Style Behavior Scale” were used. The study was completed with 40 caregivers in total with 20 in the intervention group and 20 in the control group. A statistically significant difference was determined between the “Zarit Caregiving Burden Scale” and “Healthy Life Style Behavior Scale” score averages of the intervention group that participated in the “First You Should Get Stronger” program in comparison with those of the control group. Results: It is important for the healths of caregivers to include similar programs for the caregivers of dementia patients in continuous and regular applications. Discussion: The results highlight the importance of the “First You Should Get Stronger”program significantly decreased the caregiving burden and significantly developed the healthy lifestyle behaviors of caregivers in the intervention group. Since dementia is a difficult neurological syndrome with patients cared at home, it generally wears out the caregivers significantly. It is suggested that the nurses and healthcare professionals working with dementia patients are evaluated separately and that they carry out caregiving applications within the scope of the “First You Should Get Stronger” program.

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Health effects of informal caregiving across Europe: A longitudinal approach

Due to an expected increase of people in need of care, sound knowledge about health effects of informal care provision is becoming more and more important. Theoretically, there might be positive as well as negative health effects due to caregiving to relatives. Moreover, we suppose that such health effects differ by national context – since care is differently organized in Europe – and depend on the social setting in which the care relationship takes place. Using data from the Survey of Health, Ageing and Retirement (SHARE, waves 1, 2, 3, and 5) and from the English Longitudinal Study of Ageing (ELSA, waves 2–5) we examined the connection between informal caregiving and self-perceived as well as mental health in a country comparative perspective. Taking advantage of the longitudinal structure of the data, pooled ordinary least squares (OLS) and fixed-effects models (FEM) were estimated. Our results show distinct differences in the relationship between reported health and the provision of informal care depending on whether individuals give care to someone inside or outside the household. Caregivers inside the household reported worse health, caregivers from outside the household reported better health than non-caregivers. We find that this correlation is largely due to selection into caregiving: people in worse health took up care inside while people in better health took up care outside the household. However, in most countries people who started caregiving inside the household experienced a decline in their mental health. This suggests that caregiving inside the household results in psychological stress irrespective of the type of welfare state. The results regarding self-perceived health and caregiving outside the household are less distinct. All in all our results show that health consequences of caregiving vary not only between different welfare regimes but also between countries of similar welfare state types.

  • We examine informal caregivers' health across Europe using longitudinal methods.
  • Different caregiving settings are studied in a country comparison.
  • Health consequences differ between caregiving inside and outside the household.
  • Health effects of caregiving vary between and within different welfare state types.
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The longitudinal association between informal caregiving and body mass index in the second half of life: findings of the German Ageing Survey

Objective We aimed to investigate the relation between informal caregiving and body mass index (BMI) longitudinally. Study designThe data were drawn from wave 2 (2002) to wave 5 (2014) of the German Ageing Survey. This is a representative sample of the community-dwelling population aged 40 years and above in Germany. Methods Self-rated BMI was used. Individuals were asked whether they provide informal care on a regular basis. Adjusting for employment status, age, marital status, morbidity and depressive symptoms, fixed effects regressions were used. Results The fixed effects regressions showed that the onset of informal caregiving was not associated with changes in BMI in the total sample and in women, whereas the onset of informal caregiving was associated with increasing BMI in men (β = 0.15, P < 0.05). In addition, an increase in BMI was positively associated with ageing, an increase in morbidity and a decrease in frequency of sports activities in the total sample and in both sexes. Conclusions Our findings stress the longitudinal relation between informal caregiving and BMI in men. Consequently, it might be helpful to generate weight management strategies specifically designed for male informal caregivers.

  • We examined the longitudinal association between informal care and body mass index (BMI).
  • A representative sample of individuals aged 40 years and above was used (2002–2014).
  • Onset of informal caregiving was not associated with changes in BMI in the total sample and in women.
  • Onset of informal caregiving was associated with increasing BMI in men.
  • Findings are useful to tailor weight management strategies.
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Health impact of objective burden, subjective burden and positive aspects of caregiving: an observational study among caregivers in Switzerland

Objective To investigate associations of objective caregiver burden, subjective caregiver burden and positive aspects of caregiving with self-reported health indicators in caregiving partners of persons with a severe physical disability (spinal cord injury).

Design Cross-sectional, observational.

Setting Community, Switzerland.

Participants Caregiving partners of persons with spinal cord injury (n=118, response rate 19.7%).

Outcome measures General health, role limitations due to physical health, role limitations due to mental health, pain intensity, mental health and vitality were assessed using items from the 36-Item Short Form Health Survey (SF-36). Three items were used to assess the frequency of different types of sleep problems.

Results Subjective caregiver burden was associated to all self-reported health indicators. A high subjective burden was linked to poorer general health (OR 6.5, 95% CI 2.0 to 21.5), more role limitations due to physical health (OR 4.2, 95% CI 1.4 to 12.8), more role limitations due to mental health (OR 3.6, 95 % CI 1.1 to 11.7), higher pain intensity (OR 4.0, 95% CI 1.4 to 11.5), poorer mental health (coefficient −17.9, 95% CI −24.5 to −11.2), lower vitality (coefficient −20.3, 95% CI −28.4 to −12.1), and more frequent sleep problems (OR 5.3, 95% CI 1.6 to 18.4). Partners who indicated positive aspects of caregiving further reported better mental health (coefficient 6.5, 95% CI 0.2 to 12.8). Objective burden was not related to any health indicator.

Conclusions Subjective burden and lack of positive aspects of caregiving were associated with poorer physical and mental health. Caregiver health may be promoted through the strengthening of psychological and psychosocial resources.

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Effect of caregiving relationship and formal long-term care service use on caregiver well-being

Aim: Despite efforts to revise the traditional long‐term care (LTC) model, informal caregivers continue to provide a substantial amount of support to older adults as front‐line care providers. The present study aimed to understand the effect of informal caregiving on caregivers’ well‐being in Singapore with respect to different types of patient–caregiver relationships. Second, this study examined the association between formal LTC service use and caregivers’ well‐being. Methods: Two waves of data for 781 dyads of patients with LTC needs and their caregivers from a longitudinal study were analyzed. Multilevel regression models were used to examine the association between caregivers’ well‐being (self‐rated general health, stress level and quality of life) and LTC service use among different patient–caregiver relationships. Results: Spousal caregivers reported significantly lower quality of life compared with adult children caregivers. Non‐immediate family caregivers showed better overall well‐being compared with spouse and adult children caregivers. Caregivers of patients referred to nursing homes reported higher levels of stress and poorer self‐rated general health compared with caregivers of patients referred to community‐based services. Spouse and non‐immediate family caregivers of patients who utilized nursing home or home‐based services presented poorer self‐rated general health than caregivers of the patients who did not use any formal services. Conclusions: Developing a better understanding of the associations between well‐being and formal LTC service use for different types of patient–caregiver relationships is critical for policy makers and healthcare providers who aim to create holistic systems of care. 

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Understanding the social and emotional needs of carers: final report

This rapid literature review was commissioned by NSW Family & Community Services on behalf of the NSW Carers Advisory Council. The review aims to contribute to the evidence to help the Council to better understand the social and emotional health and wellbeing of the carer population and the specific issues and their impact in the carer population. Carers provide ongoing unpaid support to people who need it because of their disability, chronic illness, mental ill-health, dementia or frail age.The primary focus of this review is on evaluations of interventions or programs to support the social and emotional wellbeing of carers. The review also describes the key issues identified in the literature and what is known about the social and emotional health and wellbeing in the carer population. As this is a rapid literature review, it focuses on key issues, themes and solutions identified and may not be comprehensive or exhaustive

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Health-related quality of life in Spanish informal caregivers: gender differences and support received

PURPOSE: We analyzed gender differences in health-related quality of life (HRQoL) and associated factors between informal male and female caregivers in Spain. It is important because of growing rates of dependent people and dwindling public resources. METHODS: We conducted a cross-sectional study of 610 informal caregivers (265 male and 345 female) using an ad hoc structured questionnaire. We performed a descriptive analysis and used multivariate logistic regression to analyze the risk of poor HRQoL, measured with the EQ-5D-5L, according to caregiver sex, sociodemographic characteristics of caregivers and dependents, caregiving circumstances, and support received. RESULTS: Male caregivers were older than women were, and cared more often for their partners. More women used family caregiving allowance (FCA), respite care services, and counseling services, while more men used paid help, home help, and other forms of instrumental help. Women had worse HRQoL than men, particularly in the pain/discomfort dimension. In addition to older age and poor previous health, caring for a partner (OR = 2.379), for a person with major dependence (OR = 1.917), low social class (OR = 1.634), and low social support (OR = 2.311) were factors associated with poor HRQoL. Receiving FCA was associated with better HRQoL (OR = 0.319). Controlling for all these variables, women had 131% more odds than men to have poor HRQoL. CONCLUSIONS: Male and female caregivers in Spain differ in received support and how their HRQoL is affected. These differences are important to design interventions to promote more equitable sharing of care responsibilities and better caregiver health.

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Factors That Influence Self-Reported Health Changes With Caregiving

Objective: This study examined factors associated with the self-reported change in health status as a result of caregiving. Method: Multinomial logistic regression were performed to examine the sociodemographic characteristics, care recipients’ characteristics, and caregiving experiences that affect caregivers’ perceptions of health affected by caregiving using data from 1,087 caregiver respondents in the Caregiving in the U.S. 2015 data set. Data were collected through an online or telephone survey of randomly selected adults in 50 states. Results: Worsened self-reported health with caregiving occurred for caregivers aged 50 to 64, racial/ethnic minorities, those who lived within 20 min of the care recipient’s home, the presence of cognitive deficits, prolonged caregiving, and limited availability of accessible and affordable care services. Importantly, the feeling of choice in taking on care responsibilities was associated with an over fourfold increase in the odds ratio (OR) of better health in response to caregiving (OR = 4.21 confidence interval [CI] = [1.95, 9.08] p < .001). Discussion: Results suggest that improving accessibility of social service resources to assist caregivers in being better supported and having more choice in caregiving responsibilities may foster a positive change in health status with caregiving. 

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Effects of home-based long-term care services on caregiver health according to age

Background: Caregiver health is a crucial public health concern due to the increasing number of elderly people with disabilities. Elderly caregivers are more likely to have poorer health and be a care recipient than younger caregivers. The Taiwan government offers home-based long-term care (LTC) services to provide formal care and decrease the burden of caregivers. This study examined the effects of home-based LTC services on caregiver health according to caregiver age.

Methods: This cross-sectional study included a simple random sample of care recipients and their caregivers. The care recipients had used LTC services under the Ten-Year Long-Term Care Project (TLTCP) in Taiwan. Data were collected through self-administered questionnaires from September 2012 to January 2013. The following variables were assessed for caregivers: health, sex, marital status, education level, relationship with care recipient, quality of relationship with care recipient, job, household monthly income, family income spent on caring for the care recipient (%) and caregiving period. Furthermore, the following factors were assessed for care recipients: age, sex, marital status, education level, living alone, number of family members living with the care recipient, quality of relationship with family and dependency level. The health of the caregivers and care recipients was measured using a self-rated question (self-rated health [SRH] was rated as very poor, poor, fair, good and very good).

Results: The study revealed that home nursing care was significantly associated with the health of caregivers aged 65 years or older; however, caregivers aged less than 65 who had used home nursing care, rehabilitation or respite care had poorer health than those who had not used these services. In addition, the following variables significantly improved the health of caregivers aged 65 years or older: caregiver employment, 20% or less of family income spent on caregiving than 81%–100% and higher care recipient health. The involvement of daughters-in-law, rather than spouses, and care recipient health were positively related to the health of caregivers aged less than 65 years.

Conclusions: The findings suggest that home-based LTC service use benefits the health of elderly caregivers. By contrast, home-based LTC service use may be negatively correlated with the health of the caregivers aged less than 65 years.

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Caregiver Reactions to Dementia Symptoms: Effects on Coping Repertoire and Mental Health

Currently, 15 million informal caregivers, most of whom are women, provide care for older adults with dementia (Alzheimer's Disease Association, 2016). Caregiving for these individuals often creates distress and may adversely affect female caregivers' psychosocial and spiritual well-being. Approximately 35% of dementia caregivers complain of health deterioration after initiating caregiving responsibilities as compared to 19% of caregivers of older adults who do not have dementia (Alzheimer's Disease Association, 2016). Persons with dementia exhibit symptoms and behaviors that often are challenging for their caregivers. The way that caregivers react to these symptoms and behaviors may affect their coping repertoire and their mental health. Adequate evaluation of caregiver reactions to symptoms of dementia will provide information useful for developing targeted interventions to promote optimal health of female dementia caregivers and to potentially postpone the need for nursing home or long-term placement of the care recipient.

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The humanistic burden associated with caring for patients with advanced non-small cell lung cancer (NSCLC) in three European countries-a real-world survey of caregivers

Purpose: This study evaluated the humanistic burden on caregivers of patients with advanced non-small cell lung cancer (aNSCLC) as the disease progresses.; Methods: Data were drawn from a cross-sectional study of patients with aNSCLC and their caregivers conducted in France, Germany, and Italy between 2015 and 2016. Data were collected by medical chart review and patient and caregiver questionnaires. The EuroQol five-dimension three-level (EQ-5D-3L) was used to evaluate patient and caregiver health status. Caregivers also completed the Work Productivity and Activity Impairment (WPAI) questionnaire and Zarit Burden Interview (ZBI).; Results: The population for the analysis consisted of 427 caregivers (mean age 53.5 years; 72.6% female; 54.9% spouse; 36.2% in full-time employment) and 427 matched patients (mean age 66.2 years; 68.6% male). Most (69.5%) patients were receiving first-line therapy for advanced disease. Patients' caregivers provided a mean of 29.5 h of support per week. Significant differences in EQ-5D-3L scores were observed between caregivers of patients receiving first and later lines of therapy in France (0.87 vs. 0.78; p = 0.0055). Among employed caregivers, overall work impairment was considerable and ranged from 21.1% in Germany to 30.4% in France and 29.7% in Italy. Caregivers of patients receiving later lines of therapy in France rated their own health status as significantly worse than did those caring for patients receiving first-line therapy (82.7 vs. 72.9; p = 0.0039).; Conclusions: Informal caregivers provided the majority of support for patients with advanced NSCLC and their caregiving activities impose a significant humanistic burden.

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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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Physical health problems in people with psychosis: The issue for informal carers

Background: Reduced life expectancies are recorded in adults with psychotic disorders. Informal carers play key roles in improving illness outcomes for patients, including significantly reducing rates of relapse and hospitalisation. There is, however, a dearth of literature detailing carers' perspectives on physical health problems in the relatives they care for and implications for those in the caregiving role. The study sought to explore carers' subjective experiences of supporting a relative with psychosis and physical health problems.; Methods: Carers of adults with psychosis were interviewed individually, or as part of a group, about physical health problems in the relatives they care for.; Results: Five key themes were identified from the interviews that reflected (1) ubiquity of physical health problems in psychosis, (2) gaps in service provision for those living with mental and physical health problems, (3) carers' role in responding to service gaps, (4) difficult conversations and (5) impact on carer health.; Conclusion: Service initiatives that are designed to improve patient physical health in psychosis should not overlook the role that informal carers might have in supporting this process. The implications that patient physical health problems present for carer well-being and the quality of the caregiving relationship in psychosis deserve further investigation.

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Weekly hours of informal caregiving and paid work, and the risk of cardiovascular disease

Background: Little is known on the association between weekly hours of informal caregiving and risk of cardiovascular disease (CVD). The objective was to investigate the individual and joint effects of weekly hours of informal caregiving and paid work on the risk of CVD.; Methods: Pooled analysis with 1396 informal caregivers in gainful employment, from the Swedish Longitudinal Occupational Survey of Health and the Whitehall II study. Informal caregiving was defined as care for an aged or disabled relative. The outcome was CVD during 10 years follow-up. Analyzes were adjusted for age, sex, children, marital status and occupational grade.; Results: There were 59 cases of CVD. Providing care >20 h weekly were associated with a higher risk of CVD compared to those providing care 1-8 h weekly (hazard ratio = 2.63, 95%CI: 1.20; 5.76), irrespectively of weekly work hours. In sensitivity analyzes, we found this risk to be markedly higher among long-term caregivers (6.17, 95%CI: 1.73; 22.1) compared to short-term caregivers (0.89, 95%CI: 0.10; 8.08). Caregivers working ≥55 h weekly were at higher risk of CVD (2.23, 95%CI: 1.14; 4.35) compared to those working 35-40 h weekly. Those providing care >8 h and working ≤40 h weekly had a higher risk of CVD compared to those providing care 1-8 h and working ≤40 h (3.23, 95%CI: 1.25; 8.37).; Conclusion: A high number of weekly hours of informal caregiving as opposed to few weekly hours is associated with a higher risk of CVD, irrespectively of weekly work hours. The excess risk seemed to be driven by those providing care over long periods of time.

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Informal caregiving as a risk factor for type 2 diabetes in individuals with favourable and unfavourable psychosocial work environments: A longitudinal multi-cohort study

Aim: To examine whether informal caregiving is associated with increased risk of type 2 diabetes (T2D), and whether job strain and social support at work modify the association.; Methods: Individual participant's data were pooled from three cohort studies-the French GAZEL study, the Swedish Longitudinal Occupational Survey of Health (SLOSH) and the British Whitehall II study-a total of 21,243 study subjects. Informal caregiving was defined as unpaid care for a closely related person. Job strain was assessed using the demand-control model, and questions on co-worker and supervisor support were combined in a measure of social support at work. Incident T2D was ascertained using registry-based, clinically assessed and self-reported data.; Results: A total of 1058 participants developed T2D during the up to 10 years of follow-up. Neither informal caregiving (OR: 1.09, 95% CI: 0.92-1.30) nor high job strain (OR: 1.04, 95% CI: 0.86-1.26) were associated with T2D risk, whereas low social support at work was a risk factor for T2D (OR: 1.18, 95% CI: 1.02-1.37). Also, informal caregivers who were also exposed to low social support at work were at higher risk of T2D (OR: 1.40, 95% CI: 1.08-1.82) compared with those who were not informal caregivers and had high social support at work (multiplicative test for interaction, P=0.04; additive test for interaction, synergy index=10).; Conclusion: Informal caregiving was not independently associated with T2D risk. However, low social support at work was a risk factor, and informal caregivers with low social support at work had even higher risks of T2D.

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Delay in Seeking Care for Pelvic Floor Disorders Among Caregivers

Objective: In 2015, 44 million adults were informal, unpaid caregivers to an adult or child. Caregiving (CG) is associated with poor self-care, higher depression rates, and decreased quality of life. Our primary objective was to determine if CG is associated with a delay in seeking care for pelvic floor disorders (PFDs).; Methods: We performed a cross-sectional survey of new urogynecology patients from September 2015 to January 2016. Subjects completed the Pelvic Floor Distress Inventory, Pelvic Floor Impact Questionnaire, Patient Reported Outcomes Measurement Information System-Depression surveys, and a survey of care-seeking practices. Caregiving was defined as considering one's self a primary caregiver and assisting with 2 or more activities and instrumental activities of daily living. Multiple logistic regression identified variables associated with delayed care-seeking for 1 or more year.; Results: Two hundred fifty-six patients completed the survey, 82 caregivers (32%) and 174 noncaregivers (NCGs). Sixty-seven percent of caregivers cared for a child and 33% for an adult. There was no difference between caregivers and NCGs in PFD symptom duration, Pelvic Floor Distress Inventory, or Patient Reported Outcomes Measurement Information System depression scores. Caregiving had higher mean Pelvic Floor Impact Questionnaire scores (69.6 vs 51.0, P = 0.02). There was no difference in proportion of patients who delayed care for 1 year or more (42% vs 54%, P = 0.08). A higher proportion of caregivers for an adult waited for 1 year or more (75% vs 42% NCG, P = 0.001). On multiple logistic regression, CG for adults only was associated with delaying care for 1 year or more (adjusted odds ratio, 3.73; confidence interval, 1.33-10.44; P = 0.01).; Conclusions: One third of patients presenting to a urogynecology practice are caregivers. Caregiving for an adult was associated with a delay in seeking care for PFDs.

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Life of the Second-Order Patient: Factors Impacting the Informal Caregiver

Informal caregivers (ICs) are forced to make adaptive lifestyle changes to meet the significant demand of caring for loved ones who are terminally ill. Open-ended questions were administered with 26 ICs who cared for loved ones diagnosed with terminal illnesses whose prognosis was less than six months. The results add substantive information to parsimonious literature and demonstrate a correlation with existing studies that coincide with the debilitating effects that caregiving has on the informal carer. The study clarifies the complexities of the caregiving role characterized by the involvement that may adversely affect socialization, physical health conditions, and marital dynamics, among other areas of the IC’s personal life. 

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Fall determinants and home modifications by occupational therapists to prevent falls

Background: Approximately one third of older people over 65 years fall each year. Home modifications may decrease occurrence of falls.; Purpose: This study aims to determine the risk factors of falls for frail older persons and to evaluate the impact of home modifications by an occupational therapist on the occurrence of falls.; Method: We conducted a longitudinal study using a quasiexperimental design to examine occurrence of falls. All participants 65 years of age and older and were assessed at baseline and 6 months after the intervention. Bivariate analysis and logistic regression models were used to study the risk factors of falls and the effect of home modifications on the incidence of falls.; Findings: The main predictors of falls were vision problems, distress of informal caregiver, and insufficient informal support. Home modifications provided by an occupational therapist showed a significant reduction of falls.; Implications: Informal caregivers and their health status had an impact on the fall risk of frail older persons. Home modifications by an occupational therapist reduced the fall risk of frail older persons at 6-months follow-up.

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Health status of people who have provided informal care or support to an adult with chronic disease in the last 5 years: results from a population-based cross-sectional survey in South Australia

Objective The aim of the present study was to compare the health status of South Australians with recent experience of caring for an adult with chronic disease with non-carers drawn from the same population. Methods Data were collected via the South Australian Health Omnibus, an annual population-based, cross-sectional survey. Respondents were asked whether they had provided care or support in the last 5 years to someone with cancer, heart disease, respiratory disease, mental illness, neurological disease or dementia. Health status was measured using the Short Form-12 version 1 (SF-12) physical and mental component scale summary scores (PCS and MCS respectively), with poor health status defined as ≥0.5 standard deviation below the normative mean. Logistic regression explored characteristics associated with poor health status.Results Of 3033 respondents analysed, 987 (32.5%) reported caring experience. Poor PCS and MCS were associated with carer status, lower-than-degree-level education, employment status other than employed and annual household income less than A$60000. Being Australian born was a protective factor for PCS, whereas factors protective for MCS were being married or in a de facto relationship and age ≥65 years.Conclusions Providing care or support in the last 5 years is independently associated with poorer health status, but not with the magnitude found in studies of current carers. Future research should explore health status recovery after completion of the caring role, and investigate whether relationships between health and socioeconomic status differ for carers versus non-carers. What is known about the topic? Population-based survey studies in Australia and overseas have consistently found that informal carers have worse health status than non-carers.What does this paper add? Including recent as well as current carers in a population-based sample was associated with less effect on health status compared with studies focused on current carers only. This finding is consistent with the possibility that health status recovers during the 5 years after caring.What are the implications for practitioners? Support for Australian carers is warranted to ensure their continuing contributions to society and return to productivity after their caring role is completed.

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Interrelationships Between Health Behaviors and Coping Strategies Among Informal Caregivers of Cancer Survivors

Background: Recent research among cancer survivors suggests that health behaviors and coping are intertwined, with important implications for positive behavior change and health. Informal caregivers may have poor health behaviors, and caregivers' health behaviors have been linked to those of survivors.; Aims: This hypothesis generating study assessed the correlations among health behaviors and coping strategies in a population of lung and colorectal cancer caregivers.; Method: This cross-sectional study used data from the Cancer Care Outcomes Research & Surveillance Consortium. Caregivers ( n = 1,482) reported their health behaviors, coping, and sociodemographic and caregiving characteristics. Descriptive statistics assessed the distribution of caregivers' health and coping behaviors, and multivariable linear regressions assessed the associations between health behaviors and coping styles.; Results: Many informal caregivers reported regular exercise (47%) and adequate sleep (37%); few reported smoking (19%) or binge drinking (7%). Problem-focused coping was associated with greater physical activity and less adequate sleep (effect sizes [ESs] up to 0.21, p < .05). Those with some physical activity scored higher on emotion-focused coping, while binge drinkers scored lower (ES = 0.16 and 0.27, p < .05). Caregivers who reported moderate daily activity, current smoking, binge drinking, and feeling less well rested scored higher on dysfunctional coping (ES up to 0.49, p < .05).; Discussion: Health behaviors and coping strategies were interrelated among informal cancer caregivers. The relationships suggest avenues for future research, including whether targeting both factors concurrently may be particularly efficacious at improving informal caregiver self-care.; Conclusion: Understanding the link between health behaviors and coping strategies may inform health behavior research and practice.

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Psychological Distress Among Caregivers of Individuals With a Diagnosis of Schizophrenia or Schizoaffective Disorder

Objective: The aim was to quantify caregiver distress among informal caregivers of individuals with schizophrenia or schizoaffective disorder and identify its correlates.; Methods: From December 2014 through April 2015, ads posted with mental health advocates and the media recruited informal caregivers, age ≥21 years, to complete an online questionnaire. It included the ten-item Perceived Stress Scale (PSS) (0, no distress; 39, highest) and hypothesized distress correlates in four groups: caregiver and care recipient characteristics; caregiver role demands; caregiver social supports; and caregiver cognitive appraisals of caregiving. Three hypotheses were tested: first, distress is significantly related to variables from each group; second, social supports moderate the effects of role demands on distress; and third, cognitive appraisals mediate the effects of role demands on distress. Hypotheses were tested with multiple linear regression equations and structural equation models (SEMs).; Results: Of 2,338 Web site "hits," 1,708 individuals consented, 1,398 were eligible, and 1,142 had complete data. Most caregivers were women (83%), white (89%), and college educated (59%), with a mean±SD age of 55.6±13.0. Compared with U.S. norms on the PSS (13.4±6.5), mean caregiver distress was high (18.9±7.1). According to SEMs, variables from each group were associated with distress. Contributing most to greater distress were caregiver health problems, providing frequent caregiving assistance, monitoring medication, having limited social support, and appraising caregiving negatively. Cognitive appraisals mediated the effects of demands on distress. Social support had a significant direct effect only.; Conclusions: Caregiver distress was relatively high and related to multiple variables, some of which are potentially modifiable.

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Informal caregiving and metabolic markers in the UK Household Longitudinal Study

Objectives: Informal caregiving is associated with poorer mental and physical health. Little research has yet focused on objectively measured health risk factors, such as metabolic markers. The aim of this study was to investigate whether informal caregiving was associated with markers of metabolism in a large, representative UK longitudinal study. We also investigated whether more intensive caregiving, as indicated by more caregiving hours, was associated with a less favourable metabolic profile.; Study Design/outcome Measures: Using data on 9408 participants aged 16+ from the UK Household Longitudinal Study, we explored the relationship between caregiving and metabolic markers (blood pressure, total and high density lipoprotein cholesterol, glycated haemoglobin and triglycerides). We additionally investigated the importance of caregiving intensity (number of hours spent caregiving per week). Associations between caregiving/caregiving intensity and metabolic markers were tested using gender-stratified linear regression models adjusted for age, household income, education, social class, chronic illness, number of dependent children in the household, body mass index and partnership status.; Results: Men who were informal caregivers had higher total cholesterol levels than non-caregivers (3.25% higher, 95% CI: 0.07, 6.53). Women caregivers also had higher total cholesterol levels and women providing intensive care (over 20 h per week) had higher triglyceride levels (19.91% higher, 95% CI: 7.22, 34.10) and lower levels of high density lipoprotein cholesterol (8.46% lower, 95% CI: 14.51, 1.99); however, associations for women were attenuated in our final models.; Conclusions: Informal caregiving is associated with less favourable lipid profiles. This may be one mechanism through which informal caregiving is associated with increased disease risk. The health of informal caregivers should be a priority for public health.

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Does the Health of Adult Child Caregivers Vary by Employment Status in the United States?

Objective: This study investigates whether the health effects of informal caregiving for aging parents vary by employment status in the United States. Two opposing hypotheses are tested: dual role strain and role enhancement.; Method: Using national longitudinal data from the U.S. Health and Retirement Study, multivariate regression models predicted self-rated health and mental health among older adult children caregiving for their parents (2009-2012) and noncaregivers.; Results: A statistically significant interaction was found between caregiving duration and employment, indicating that employed caregivers had significantly worse health than retired caregivers. Caregiving duration also predicted significantly higher levels of depressive symptoms.; Discussion: Our results support the dual role strain hypothesis and suggest that caregiving for a parent up to 4 years is enough to predict significantly worse health among older adult Baby Boomers, especially those in the labor force. The broader implications for public health and workplace policies are discussed.

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Dementia as a predictor of care-related quality of life in informal caregivers: a cross-sectional study to investigate differences in health-related outcomes between dementia and non-dementia caregivers

Background: The objectives of this study with a large sample of informal caregivers (CG) were a) to compare health-related outcomes of CGs caring for a patient with dementia and those caring for a relative with another chronic disease and b) to check whether dementia is a predictor of CG's care-related quality of life (QoL) in CarerQoL-7D.; Methods: This cross-sectional study involved self-reported data from 386 informal CGs who applied for an initial grade or upgrade of the care level of the care recipient at the Medical Service of Compulsory Health Insurance Funds of Bavaria (Germany). By obtaining data this way, systematic biases often associated with the acquisition of CGs were prevented. Bivariate and multiple analyses were conducted using a univariate covariance model (ANCOVA).; Results: Bivariate analyses showed significantly higher levels of subjective burden and lower QoL in the dementia group. No significant differences were found in terms of physical health and depressiveness, though there was a tendency suggesting higher levels of depressiveness in dementia CGs. Multiple analysis explaining QoL by dementia status after controlling for CG's sex, age and employment status revealed a significant effect of dementia, suggesting caregiving for a dementia patient was associated with lower QoL.; Conclusions: Results of the study suggest that caring for a relative with dementia is associated with poorer health, i.e. greater levels of subjective burden and depressiveness, and predicts lower QoL in CGs. These findings emphasize the importance of specific interventions aiming to support informal CGs of dementia patients.

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Supporting carers: Guidance and case studies

Councils in England receive 1.8 million new requests for adult social care a year – the equivalent of nearly 5,000 a day – and despite some helpful extra funding there is still a £3.5 billion funding gap facing adult social care by 2025 just to maintain existing standards of care. Despite these tremendous pressures this publication demonstrates current examples of how councils support adult and young carers locally in a range of different ways from respite breaks to discount cards to tailored information and advice.

Key statistics

  • 1 in 10 people are carers
  • 40 per cent increase in carers predicted over next 20 years
  • £132 billion worth of care provided by carers
  • 1 in 5 carers are aged over 65
  • 1.4 million carers provide over 50 hours of care a week
  • 7 in 10 have suffered mental ill health and 6 in 10 physical ill health from caring
  • 166,363 young carers in England – a fifth higher than a decade previously
  • 1 in 12 young carers is caring for more than 15 hours a week
  • 1 in 20 misses school because of their caring responsibilities
  • young carers are 1.5 times more likely to have a long-term illness, special educational needs or a disability
  • there are 670,000 unpaid carers of people with dementia in the UK
  • two thirds of people with dementia live at home and most are supported by unpaid carers.

The following case studies show how local authorities are supporting carers across England. It identifies the challenges authorities face and how they address them, often in partnership. It highlights the impact of services and lessons learned that will be of interest to all councils. The case studies were compiled following discussions with the lead officers and members in the areas.

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Co-resident care-giving and problematic sleep among older people: evidence from the UK Household Longitudinal Study

In light of current pressures within formal social care services, informal carers assume an important role in meeting the care needs of a growing number of older people. Research suggests relationships between care-giving and health are complex and not yet fully understood. Recently, wide-ranging associations between sleep and health have been identified, however, our understanding of the links between care-giving and sleep is limited at present. This study assesses longitudinal patterns in co-resident care-giving and problematic sleep among older people in the United Kingdom. Our sample included 2,470 adults aged 65 years and older from the UK Household Longitudinal Study. Problematic sleep was defined as two or more problems in going to sleep, staying asleep or sleep quality. Using logistic regression models, we assessed how co-resident care-giving status, intensity and transitions influence the likelihood of problematic sleep in the following year, adjusting for potential confounding factors. Adjusted analyses found co-resident care-givers were 1.49 (95% confidence interval = 1.06–2.08) times more likely to report problematic sleep in the following year, relative to those not providing care. Care-giving over 20 hours per week and continuous co-resident care-giving also significantly increased the odds of problematic sleep. This suggests older co-resident care-givers may be at greater risk of incurring sleep problems than non-care-givers. Further longitudinal research is needed to investigate care-giver-specific consequences of poor sleep.

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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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Qualitative study of challenges of caring for a person with heart failure

Heart failure (HF) is a chronic health condition that causes significant morbidity among older adults, many of whom receive support and care from an informal caregiver. Caregiving is a difficult role with many responsibilities and challenges. An in-depth understanding of these challenges is necessary to develop services, resources, and interventions for HF caregivers. The goal of this study was to qualitatively ascertain the most significant challenges facing HF caregivers. We conducted semi-structured interviews with 16 caregivers of a person with HF (PHF). Content analysis revealed challenges rooted within the PHF (negative affect, resistant behavior, independence, and illness) Caregiver (balancing employment, lack of support, time, and caregiver health) and Relational level (PHF/caregiver dyadic relationship and other relationships). These findings can be used to inform interventions and support services for HF caregivers.

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Training informal caregivers to care for older people after stroke: A quasi-experimental study

Aims: This study aimed at evaluating whether training on practical skills involved in providing care reduces the burden experienced by informal caregivers and improves their general health condition.; Background: A substantial number of informal caregivers lack skills to deliver poststroke assistance to older people after hospital discharge, which leads to burden situations as well as mental and physical health deterioration of the former.; Design: A quasi-experimental design.; Methods: This study involved 174 informal caregivers of older people who overcame a stroke. The control group (N = 89) received the usual type of care delivered in healthcare units. The experimental group (N = 85) adopted the InCARE programme for 1 week (T0), 1 month (T1) and 3 (T2) months and received telephone support by counselling caregivers on the subsequent 3rd, 6th, 8th and 10th weeks to hospital discharge. It aimed at facilitating the caregiver's adjustment to the demands of a poststroke stage and at increasing knowledge and practical skills to support the decision-making. Data collection occurred between February-December 2014 at the Community Home Care Services in northern Portugal.; Results: The experimental group obtained significantly better results regarding practical skills as well as lower burden levels and a better general mental health condition when compared with the control group 1 (T1) and 3 (T2) months after intervention.; Conclusion: Findings suggest that our programme improved practical skills, helped reduce burden levels with better scores and improvement regarding general mental health condition of informal caregivers.

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Touchscreen interventions and the well-being of people with dementia and caregivers: a systematic review

Background: Dementia can have significant detrimental impacts on the well-being of those with the disease and their carers. A range of computer-based interventions, including touchscreen-based interventions have been researched for use with this population in the hope that they might improve psychological well-being. This article reviews touchscreen-based interventions designed to be used by people with dementia (PWD), with a specific focus in assessing their impact on well-being.; Method: The data bases, PsycInfo, ASSIA, Medline, CINAHL, and Cochrane Reviews were searched for touchscreen-based interventions designed to be used by PWD with reported psychological well-being outcomes. Methodological quality was assessed using Pluye and Hong's (2014) Mixed Methods Appraisal Tool (MMAT) checklist.; Results: Sixteen papers were eligible. They covered 14 methodologically diverse interventions. Interventions were reported to be beneficial in relation to mental health, social interaction, and sense of mastery. Touchscreen interventions also reportedly benefit informal carers in relation to their perceived burden and the quality of their relationships with the people they care for. Key aspects included the user interface, provision of support, learning style, tailored content, appropriate challenge, ergonomics, and users' dementia progression.; Conclusions: Whilst much of the existing research is relatively small-scale, the findings tentatively suggest that touchscreen-based interventions can improve the psychological well-being of PWD, and possibilities for more rigorous future research are suggested.

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Informal caregivers of people with an intellectual disability in England: health, quality of life and impact of caring

There is wide variation in reported impact of caring on caregiver well-being, and often a negative appraisal of caregiving. Researchers are beginning to question the robustness of the evidence base on which negative appraisals are based. The present study aimed to draw on data from a population-representative sample to describe the health, quality of life and impact of caring of informal caregivers of people with an intellectual disability. Informal carers of people with intellectual disability ( N = 260) were identified among 2199 carers in the English Survey of Carers in Households 2009/10. Generalised estimating equations explored the association between socio-demographic and caring profile with quality of life, physical health status, and impact on psychological health and personal life. Compared to other caregivers, providing care to a person with intellectual disability was not associated with reduced quality of life. There was an 82% increased risk of reporting poorer health status, even though poorer health was not likely to be attributed to care-giving. A higher risk of negative impact on personal life was seen in comparison with the wider group of caregivers, but not in comparison with more similar-sized caregiver groups (mental health or dementia). Carers of people with intellectual disability were more likely to be struggling financially and have a high caring load. These factors were systematically related to lower well-being. A uniformly negative appraisal of caring for people with intellectual disability was not supported by these English population-representative data. Poverty and long care-giving hours may make caregivers more susceptible to negative well-being. Support for caregivers of people with intellectual disability should focus on alleviating those two factors.

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Informal care and sleep disturbance among caregivers in paid work: Longitudinal analyses from a large community-based Swedish cohort study

Study objectives: To examine cross-sectionally and prospectively whether informal caregiving is related to sleep disturbance among caregivers in paid work.; Methods: Participants (N=21 604) in paid work from the Swedish Longitudinal Occupational Survey of Health. Sleeping problems were measured with a validated scale of sleep disturbance (Karolinska Sleep Questionnaire). Random-effects modelling was used to examine the cross-sectional association between informal caregiving (self-reports: none, up to 5h per week, over 5h per week) and sleep disturbance. Potential socio-demographic and health confounders were controlled for and interactions between caregiving and gender included. Longitudinal random-effects modelling of the effects of changes in reported informal caregiving upon sleep disturbance and change in sleep disturbance were performed.; Results: In multivariate analyses controlling for socio-demographics, health factors and work hours, informal caregiving was associated cross-sectionally with sleep disturbance in a dose-response relationship (compared to no caregiving, up to 5h of caregiving: β = .03; 95% CI: .01; .06, over 5h: β = .08; 95% CI: .02; .13), results which varied by gender. Cessation of caregiving was associated with reductions in sleep disturbance (β = -.08; 95% CI: -.13; -.04).; Conclusions: This study provides evidence for a causal association of provision of informal care upon subjective sleep disturbance. Even low intensity care provision was related to sleep disturbance among this sample of carers in paid work. The results highlight the importance of addressing sleep disturbance in caregivers.

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Reduced cardiovascular activation following chronic stress in caregivers of people with anorexia nervosa

Caring for offspring diagnosed with eating disorders (EDs) puts caregivers under high levels of chronic stress, which have negative consequences for their health. Unfortunately, caregivers have received little attention from mental health professionals. Chronic stress experienced by informal caregivers has been associated with the alteration of body homeostasis, and therefore, the functioning of various physiological systems. This could be the basis of health problems in informal caregivers of people with EDs. The main objective of this study was to analyze physiological response, in terms of heart rate (HR) and heart rate variability (HRV), to an acute laboratory stressor in a sample of informal caregivers of individuals with anorexia nervosa (n = 24) compared to a sample of noncaregivers (n = 26). In addition, the relationship between depressive mood and the aforementioned cardiovascular response parameters was analyzed in the group of caregivers. Caregivers had higher high-frequency (HF) power HRV, and lower HR, low-frequency (LF) power HRV and LF/HF ratio values than noncaregivers, which suggests lower cardiovascular reactivity to the acute stressor than noncaregivers. Moreover, a blunted HR response to stress was associated with high depressive mood scores in caregivers. Hence, it seems that the worse the mood the lower the cardiovascular reactivity to stressful events in this population. Developing and implementing psychotherapeutic interventions focused on stress management would help caregivers to reduce their stress levels and cope more effectively with stressors.

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Stress-Induced Endocrine and Immune Dysfunctions in Caregivers of People with Eating Disorders

Caregivers have to cope repeatedly with acute stressors in their daily lives, and this is associated with disturbances in the hypothalamic-pituitary-adrenal (HPA) axis and the immune system. Such disturbances could contribute to the development of health problems in informal caregivers of people with chronic illnesses, such as eating disorders (EDs). The main objective of this study was to examine endocrine (salivary cortisol levels (Csal)), immune (immunoglobulin-A (IgA)), and psychological (anxiety, mood, and anger feelings) responses to an acute psychological stressor in a sample of informal caregivers of individuals with EDs compared to a sample of non-caregivers. In addition, it also aimed to analyze the potential relationship of the aforementioned endocrine and immune response parameters with psychological variables in the caregivers. Caregivers had lower Csal and IgA levels at all assessment points except baseline. Moreover, they also exhibited lower Csal and IgA responses and greater worsening of mood in response to acute psychosocial stress than the non-caregivers, which suggests that caregivers had dampened endocrine and immune reactivity to acute stress. On the other hand, endocrine and immune parameters were unrelated to psychological variables. These findings advance our understanding of how a chronically stressed population reacts to acute stress, and should be considered for the development of effective interventions focused on stress management that could help caregivers to reduce their stress levels, which, in turn, would improve their health.

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Randomised trial of restorative home care for frail older people in New Zealand

Aim To establish the effectiveness of a restorative home support service on institutional-free survival in frail older people referred for needs assessment. Method A randomised controlled trial of Community Flexible Integrated Responsive Support Team versus usual care in 113 older people at risk of institutionalisation in New Zealand. Primary outcome was death or permanent institutional care evaluated in a Cox proportional hazards model adjusted for baseline prognostic variables. A variety of secondary outcomes including the health of informal caregivers were also evaluated. Results The primary outcome was lower, but not statistically significant, in the intervention group (adjusted hazard ratio 0.69, 95% confidence interval 0.4 to 1.16). Informal caregivers of interventional participants had significantly better physical and mental component scores on the 36-item Short-Form questionnaire. Conclusion Restorative home support may reduce the risk of death and institutionalisation in frail older people without affecting the health of informal caregivers.

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Mental health and morbidity of caregivers and co-residents of individuals with dementia: a quasi-experimental design

Objectives: To determine if providing informal care to a co-resident with dementia symptoms places an additional risk on the likelihood of poor mental health or mortality compared with co-resident non-caregivers.; Design: A quasi-experimental design of caregiving and non-caregiving co-residents of individuals with dementia symptoms provides a natural comparator for the additive effects of caregiving on top of living with an individual with dementia symptoms.; Methods: Census records, providing information on household structure, intensity of caregiving, presence of dementia symptoms and self-reported mental health were linked to mortality records over the following 33 months. Multi-level regression models were constructed to determine the risk of poor mental health and death in co-resident caregivers of individuals with dementia symptoms compared with co-resident non-caregivers, adjusting for the clustering of individuals within households.; Results: The cohort consisted of 10 982 co-residents (55.1% caregivers), with 12.1% of non-caregivers reporting poor mental health compared with 8.4% of intense caregivers (>20 h of care per week). During follow-up, the cohort experienced 560 deaths (245 to caregivers). Overall, caregiving co-residents were at no greater risk of poor mental health but had lower mortality risk than non-caregiving co-residents (adjusted odds ratio (ORadj) = 0.93, 95% confidence interval (CI) 0.79, 1.10 and ORadj = 0.67, 95% CI 0.56, 0.81, respectively); this lower mortality risk was also seen amongst the most intensive caregivers (ORadj = 0.65, 95% CI 0.53, 0.79).; Conclusion: Caregiving poses no additional risk to mental health over and above the risk associated with merely living with someone with dementia and is associated with a lower mortality risk compared with non-caregiving co-residents.

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Impact of informal caregiving on older adults' physical and mental health in low-income and middle-income countries: a cross-sectional, secondary analysis based on the WHO's Study on global AGEing and adult health (SAGE)

Objectives: A high proportion of care stemming from chronic disease or disability in low-income and middle-income countries is provided by informal caregivers. The goal of this study was to determine the level of burden experienced by these caregivers, explore associated factors and assess whether caregivers' and non-caregivers' health differed.; Design and Setting: This cross-sectional study was a secondary analysis of data on caregivers' burden, health and health risk factors in Ghana, India and the Russian Federation collected as part of the WHO's Study on global AGEing and adult health (SAGE) Wave 1.; Participants: Caregivers in Ghana (n=143), India (n=490) and Russia (n=270) completed the measures.; Outcome Measures: Factors associated (ie, demographics and caregiving profile variables) with burden were explored among caregivers. Then, quality of life (QOL), perceived stress, depression, self-rated health (SRH) and health risk factors were compared between caregivers and matched non-caregivers (1:2).; Results: The largest caregiving subgroups were spouses and adult children. Caregivers mostly cared for one person and provided financial, social/emotional and/or physical support, but received little support themselves. Burden level ranged from 17.37 to 20.03. Variables associated with burden were mostly country-specific; however, some commonality for wealth, type of care and caregiving duration was noted. Caregivers with a moderate or high level of burden reported lower QOL and higher perceived stress than those experiencing low burden. Caregivers reported lower QOL and SRH than non-caregivers.; Conclusion: Given the lack of support received and consequences of the burden endured by caregivers, policy and programme initiatives are needed to ensure that caregivers in low- and middle-income countries can fulfil their role without compromising their own health.

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Distinct impacts of high intensity caregiving on caregivers' mental health and continuation of caregiving

Although high-intensity caregiving has been found to be associated with a greater prevalence of mental health problems, little is known about the specifics of this relationship. This study clarified the burden of informal caregivers quantitatively and provided policy implications for long-term care policies in countries with aging populations. Using data collected from a nationwide five-wave panel survey in Japan, I examined two causal relationships: (1) high-intensity caregiving and mental health of informal caregivers, and (2) high-intensity caregiving and continuation of caregiving. Considering the heterogeneity in high-intensity caregiving among informal caregivers, control function model which allows for heterogeneous treatment effects was used.This study uncovered three major findings. First, hours of caregiving was found to influence the continuation of high-intensity caregiving among non-working informal caregivers and irregular employees. Specifically, caregivers who experienced high-intensity caregiving (20-40 h) tended to continue with it to a greater degree than did caregivers who experienced ultra-high-intensity caregiving (40 h or more). Second, high-intensity caregiving was associated with worse mental health among non-working caregivers, but did not have any effect on the mental health of irregular employees. The control function model revealed that caregivers engaging in high-intensity caregiving who were moderately mentally healthy in the past tended to have serious mental illness currently. Third, non-working caregivers did not tend to continue high-intensity caregiving for more than three years, regardless of co-residential caregiving. This is because current high-intensity caregiving was not associated with the continuation of caregiving when I included high-intensity caregiving provided during the previous period in the regression. Overall, I noted distinct impacts of high-intensity caregiving on the mental health of informal caregivers and that such caregiving is persistent among non-working caregivers who experienced it for at least a year. Supporting non-working intensive caregivers as a public health issue should be considered a priority.

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Association of informal caregiving with body mass index and frequency of sporting activities: evidence of a population-based study in Germany

Background: While most studies focused solely on the comparison between informal caregivers and non-caregivers, little is known about the relation between caregiving time or caregiving activities and lifestyle factors. Thus, the aim of this study was to examine whether informal caregiving time and type of caregiving activities are associated with body mass index (BMI) and the frequency of sporting activities among informal caregivers.; Methods: Cross-sectional data were gathered from the German Ageing Survey, a nationally representative study among community-dwelling individuals aged ≥40 that includes a total of n = 1380 people who provide informal care services. Self-reported BMI and self-reported frequency of sporting activities (daily; several times a week; once a week; 1-3 times a month; less often; never) were used as dependent variables. The average time of providing informal care per week as well as four different caregiving activities (help around the house; looking after someone; performing nursing care services; help in another way) were included as independent variables. Multiple ordinal and linear regressions were used to estimate the association between caregiving factors and the frequency of sporting activities and BMI, respectively.; Results: Among the 1380 informal caregivers, 65% provided help around the house, 83% looked after people, 28% provided nursing care services, and 68% provided any other help. Bivariate analyses showed that sporting activities and BMI differed by status of providing nursing care services, whereas the other three types of informal caregiving were not associated with BMI nor frequency of sporting activities except for the latter and provision of help around the house. Multiple regressions showed that BMI increased with caregiving time and performing nursing care services, whereas it was not associated with the other three caregiving activities. Likewise, the frequency of sporting activities decreased only with caregiving time and performing nursing care services.; Conclusions: The present study revealed that caregiving time and performing nursing care services are associated with a higher BMI and a decreased frequency of sporting activities. As both, a higher BMI and fewer sporting activities are in turn related to various adverse health outcomes, this knowledge should be taken into account when planning informal caregiving.;

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Caregiver-Reported Health Outcomes: Effects of Providing Reflexology for Symptom Management to Women With Advanced Breast Cancer

Purpose/objectives: To determine the effects of delivering a reflexology intervention on health outcomes of informal caregivers, and to explore whether intervention effects are moderated by caregiver characteristics. ; Design: Two-group, randomized clinical trial.; Setting: Eight oncology clinics in urban and rural regions of Michigan and Illinois.; Sample: 180 informal caregivers of patients with advanced breast cancer.; Methods: Caregivers were randomized to provide reflexology to individuals with cancer during a four-week period or to attention control. Data collection occurred at baseline and at weeks 5 and 11. Linear mixed-effects modeling was used to test intervention effects among all participants and the effects of the number of sessions delivered in the reflexology group.; Main Research Variables: Caregiver characteristics; psychological, physical, and social outcomes.; Findings: Caregiver fatigue in the reflexology group was reduced compared to controls at weeks 5 (p = 0.02) and 11 (p = 0.05). No differences were found for anxiety, depression, pain, physical function, sleep disturbance, satisfaction with participation in social roles, and pain interference between caregivers who delivered reflexology and those who did not.; Conclusions: Informal caregivers who provided reflexology to individuals with cancer did not have negative psychological, physical, or social outcomes. Fatigue levels were lower among caregivers who provided reflexology. ; Implications For Nursing: Clinicians need to be aware that providing supportive care interventions, such as reflexology, to reduce symptom burden does not increase negative outcomes on informal caregivers who provide this care, and it may even lead to reduced fatigue.

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Will you still need me, will you still feed me when I'm 64? The health impact of caregiving to one's spouse

Informal care may substitute for formal long-term care that is often publicly funded or subsidized. The costs of informal caregiving are borne by the caregiver and may consist of worse health outcomes and, if the caregiver has not retired, worse labor market outcomes. We estimate the impact of providing informal care to one's partner on the caregiver's health using data from the Survey of Health, Ageing, and Retirement in Europe. We use statistical matching to deal with selection bias and endogeneity. We find that in the short run caregiving has a substantial effect on the health of caregivers and, for female caregivers, on their health care use. These effects should be taken into account when comparing the costs and benefits of formal and informal care provision. The health effects may, however, be short-lived, as we do not find any evidence that they persist after 4 or 7 years.;

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Social and health-related factors associated with refraining from seeking dental care: A cross-sectional population study

Background: Social inequities are considered to affect healthcare utilization, whereas less is known about the factors associated with refraining from seeking dental care. This study aimed to investigate whether people with no social support, long-term illness, caregiver burden and low socioeconomic status (SES) refrained from seeking dental care in higher proportion than the general Swedish population.; Methods: This study used cross-sectional questionnaire data from repeated nationwide health surveys during 2004-2013 of a total of 90 845 people. The questionnaire included questions on demographic characteristics, social support, long-term illness, caregiving burden, SES and dental care-seeking behaviour. Descriptive statistics, chi-square tests, correlation analyses and logistic regressions were used to investigate associations between independent variables and dental care-seeking behaviour.; Results: In the total sample, 15.1% of respondents reported refraining from seeking dental care. Having no emotional social support or having no instrumental social support was separately associated with reporting refraining from seeking dental care in adjusted multivariate models (odds ratio [OR] 1.26, 95% confidence interval [CI] 1.18-1.34 and OR: 1.89, 95% CI: 1.67-2.13, respectively). Having a long-term illness was associated with refraining from seeking dental care in adjusted models (adjusted OR: 1.43, 95% CI: 1.35-1.51). Furthermore, being an informal caregiver was associated with refraining from seeking dental care (adjusted OR: 1.15, 95% CI: 1.07-1.23). Low SES was associated with higher refraining from seeking dental care; the strongest association was with having financial problems (adjusted OR: 3.57, 95% CI: 3.19-4.00). Interaction effects were found between education level and SES, and between social support and long-term illness, and the outcome.; Conclusions: The findings in this study imply that having no social support, having long-term illness, being informal caregiver or having financial problems are factors associated with reporting refraining from seeking dental care, on a population basis.

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Effect of multicomponent interventions on competence of family caregivers of people with dementia: A systematic review

Aims and objectives: This review aims to summarise and evaluate multicomponent interventions focused on improving the competence of family members of people with dementia (PwD) who undertake the caregiving tasks. Background: Caregiver competence is essential for family members of PwD acting as caregivers. Competence affects the physical and mental health of both PwD and caregivers. Many kinds of multicomponent interventions are used to improve caregiver competence. Design: A systematic review. Methods: A literature search from six databases was conducted. Articles published until January 2017 were screened. Intervention studies that measured caregiver competence of family members of PwD as an outcome were included. The Oxford Center Evidence‐based Medicine criteria and the Cochrane Handbook for Systematic Reviews of Interventions were used for quality assessment. Results: Fifteen studies were included, and number of participants was 1096. The characteristics of the included studies and key findings were analysed. Multicomponent interventions may improve the family caregivers’ competence. Caregivers in the intervention group were confident and skilful in managing their role. Conclusion: The intervention design, treatment content and length and intensity of the intervention varied in the included studies. Given that heterogeneity was high, combining these results via narrative synthesis is more appropriate than a meta‐analysis. The current study provides recommendations regarding the formulation and implementation of interventions based on relevant literature. In view of existing research, researchers should conduct an in‐depth study in this area and provide evidence‐based interventions to support family members caring for PwD. Relevance to clinical practice: The competence of family caregivers is essential for the life quality of PwD. To promote the health of the family caregiver and PwD, multicomponent interventions may be appropriate for nurses to practice.

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The Tele.TAnDem Intervention: Telephone-based CBT for Family Caregivers of People With Dementia

Background and Objectives: This study evaluated the effectiveness of a telephone-based cognitive-behavioral therapy for family caregivers of people with dementia in existing health care provision structures. Research Design and Methods: Two hundred seventy-three family caregivers of people with dementia were randomly assigned to receive the intervention or usual care. Usual care included unrestricted access to community resources. Intervention group participants received twelve 50-min sessions of individual cognitive-behavioral therapy by trained psychotherapists within 6 months. Symptoms of depression, emotional well-being, physical health symptoms, burden of care, coping with the care situation and challenging behavior were assessed after the intervention ended and at a 6-month follow-up. Intention-to-treat analyses using latent change models were applied. Results: Intention-to-treat analyses showed improved emotional well-being (γ = 9.59, p = .001), fewer symptoms of depression (γ = -0.23, p = .043), fewer physical health symptoms (γ = -0.25, p = .019), improved coping with the care situation (γ = 0.25, p = .005) and the behavior of the care recipient (γ = 0.23, p = .034) compared with usual care. Effects for coping (γ = 0.28, p = .006 and γ = 0.39, p < .001, respectively) and emotional well-being (γ = 7.61, p = .007) were also found at follow-up. Discussion and Implications: The CBT-based telephone intervention increased mental and physical health as well as coping abilities of family caregivers of people with dementia. The intervention can be delivered by qualified CBT therapists after an 8-h training session in existing health care provision structures.

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Musculoskeletal Symptoms among Family Caregivers of Community-Dwelling Stroke Survivors in Nigeria

Introduction: Caring for stroke survivors may be burdensome with adverse consequences on caregivers' physical health. This study examined the prevalence of musculoskeletal symptoms and associated factors among family caregivers of stroke survivors in Nigeria. Methods: A hospital-based cross-sectional study involving 90 stroke caregiver and stroke survivor dyads was conducted. Data on the participants' demographics and post-stroke duration were obtained. Seven-day prevalence of musculoskeletal symptoms among the caregivers and level of stroke survivors' disability were respectively assessed using the Nordic Musculoskeletal Questionnaire and Modified Rankin Scale. Prevalence of musculoskeletal symptoms was presented as percentages while participants' characteristics associated with prevalence of musculoskeletal symptoms were examined using inferential statistics. Results: Mean (SD) age of caregivers and stroke survivors was 33.2 (10.7) years and 58.9 (9.7) years respectively. Majority of the caregivers were females (61.1%), and children of the stroke survivors (58.9%). Prevalence of musculoskeletal symptoms was 82.2%. The low back was the most affected body region (72.2%) followed by the upper back (40%) while musculoskeletal symptoms in the wrist was least prevalent (3.3%). Female caregivers, caregivers of female stroke survivors and spousal caregivers had significantly higher prevalence of musculoskeletal symptoms compared to other categories of caregivers. Only 5 (5.6%) caregivers had however received any training on safe care giving methods while only 21 (28.4%) caregivers with musculoskeletal symptoms had received treatment. Conclusion: With the high prevalence of musculoskeletal symptoms among family caregivers of stroke survivors, effective preventive strategies including training and education as well as timely access to treatment would be required. 

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The vulnerability of family caregivers in relation to vulnerability as understood by nurses

In Finland, the care of older persons is shifting from institutional care to family care. Research shows that family caregivers experience their situation much in the same way as professional nurses. The nurses' experiences have been studied in terms of vulnerability, and the same perspective could deepen our understanding of family caregivers' experiences. The aim of this study was to gain knowledge of the vulnerability of older caregivers taking care of an ageing family member. The research questions were as follows: How do family caregivers experience vulnerability? How do their experiences relate to vulnerability as understood by nurses? The study was done as a secondary analysis of focus group interviews on the experiences and daily life of older family caregivers. Four caregivers had taken part in monthly interviews during a period of 10 months. The interviews were analysed by deductive and inductive content analysis. The results showed that the caregivers saw caregiving as part of being human. They experienced a variety of feelings and moral agony and were harmed physically, mentally and socially. They showed courage, protected themselves and recognised that being a caregiver also was a source of maturing and developing. These results corresponded with the nurses' understanding of vulnerability. Shame, the experience of duty as a burden, worry and loneliness were themes that were found only among the family caregivers. The use of a matrix may have restricted the analysis, but using it in an unconstrained way allowed for new themes to be created. The results indicate a common humanness and vulnerability in professional and family caregiving. They also show that family caregivers need more support both from society and professionals. [ABSTRACT FROM AUTHOR]

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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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Attentional avoidant biases as mediators in the association between experiential avoidance and blood pressure in dementia family caregivers

Objectives: Experiential avoidance in caregiving (EAC) has been found to be related with dementia family caregivers' distress and blood pressure (BP). The association between EAC and avoidant attentional biases to emotional stimuli in dementia caregivers, and the potential mediating role of these attentional biases in the association between EAC and increased BP are explored. Method: Seventy nine dementia family caregivers performed a dot-probe task with emotional pictures (distressing and positive) varying in content (general vs. caregiving-related (CR)) and time of exposure (100 vs. 500 ms). They also completed measures of EAC, anxiety, depression, alexithymia and rumination, and their BP was measured. Results: EAC was associated with avoidant attentional biases to CR emotional pictures and negative pictures in general at 100 ms. Experiential Avoidance in Caregiving Questionnaire (EACQ) 'avoidant behaviors' and EACQ 'intolerance of negativity' factors were associated with diastolic and systolic BP, respectively, with attentional avoidance of CR emotional pictures (distressing and positive, respectively) mediating this association. Conclusion: Attentional avoidance of CR emotional stimuli may be the link between EAC and increased BP, as it prevents emotional processing and facilitates the maintenance of physiological activation. EAC may pose a risk for cardiovascular disease in dementia caregivers. 

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Randomized, controlled trial of a brief family‐centred care programme for hospitalized patients with bipolar disorder and their family caregivers

Family interventions have been emphasized in the treatment of bipolar disorder (BPD) due to the bidirectional and entangled relationships between patients and the family system, and have benefits for patients’ symptoms and health; however, the effects of family interventions on family function and caregivers’ health‐related outcomes have not been well investigated. This randomized, controlled trial with 47 hospitalized patients with BPD/family caregiver dyads at a medical centre in northern Taiwan compared the effects of a brief family‐centred care (BFCC) programme with treatment as usual (TAU). All of the family caregivers in two groups were invited to attend a routine 60‐min family discussion group about violence and suicide prevention. The TAU group without specific family interview for patient and family caregiver dyad. In the BFCC group, four 90‐min BFCC programme sessions were additionally provided twice a week for each hospitalized family dyad. We hypothesized that, first, family caregivers in the BFCC group could increase their family function, and second, improve perceived health status and reduce caregiver's burdens compared to the TAU. The results showed that family caregivers in the BFCC group significant interaction effects in overall family function (P = 0.03) and subscale conflict (P = 0.04), communication (P = 0.01), and problem‐solving (P = 0.04), but there were no significant interaction effects on the caregivers’ perceived health status and caregivers’ burdens. Our findings support both the feasibility of using the BFCC programme for inpatients and its specific benefits for family function. An intensive family intervention during hospitalization has been suggested in psychiatric practice to support patients with BPD and family caregivers. 

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Caregiving at the End of Life: The Challenges for Family Caregivers

In recent years, end-of-life care has been receiving attention in the lay and professional press. Integral to the concerns for patient-centered supportive care is the need to focus on the family caregiver, as they are directly involved in the patient's care. This article describes relevant challenges for the family caregiver, including information about types of care, scheduling and logistics, patient physical care, including symptom management, caregiver emotional and physical health, advance directives, coordination of care, and communication. It concludes by imagining a better system of end-of-life care for patients and caregivers. 

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Engagement in health-promoting behaviors and patient-caregiver interdependence in dyads facing advanced cancer: an exploratory study

Diet and exercise are important for the wellbeing of people with cancer and their family caregivers. Unfortunately, little is known about their behaviors over time or factors that may influence their engagement in these behaviors. This exploratory study examined the influence of chronic conditions, symptom distress, and perceived social support on exercise and diet behaviors of patients with advanced cancer and their caregivers using the actor-partner interdependence mediation model (APIMeM) and interdependence theory as guiding frameworks. This secondary analysis uses self-report data from a large RCT (N = 484 patient-caregiver dyads) at three time points: baseline data was collected within three months of the diagnosis, at 3 months post-baseline, and 6 months post-baseline. A number of actor effects were observed: patient and caregiver prior exercise and diet were significant predictors of their own future exercise and diet behaviors; more patient-reported social support was associated with less patient exercise; more patient symptom distress was associated with poorer patient diet; and, more caregiver-reported social support was associated with more caregiver exercise and better caregiver diet. Partner effects were also observed: more patient exercise was positively associated with more caregiver exercise; more patient comorbidities were associated with better caregiver diet; more caregiver-reported social support was associated with better patient diet; and, more patient-reported social support was associated with better caregiver diet. Despite the challenges of advanced cancer and caregiving, past exercise and diet behavior remained a significant predictor of future behavior. Other health problems and perceptions of social support within the dyad may exert a positive or negative influence on patient/caregiver diet and exercise. 

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Profile and burden of care among caregivers of Ultra-Orthodox Frail Elders

Objective: A paucity of research exists on burden of care (BoC) and factors associated with it among minority groups, such as Ultra-Orthodox Jews. The aims of this study were (1) to portray the profile of Ultra-Orthodox Jewish (UOJ) caregivers and their BoC;(2) to explore relations between care recipients' characteristics, care situations, characteristics of caregivers, and BoC. Methods: A total of 107 UOJ (66 women, 41 men) family caregivers were interviewed face to face in their homes, using valid and reliable measures. Results: Participants reported moderate BoC and high level of social support. Caregiver's self-rated health, caregiver's anxiety, and social support emerged as significant predictors of caregiver burden. Conclusions: Our findings might help social workers and other health professionals to better understand the unique characteristics of the UOJ community and to target caregivers with higher anxiety, lesser social support, and poorer self-rated health in order to reduce their caregiving burden. 

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Discussion Paper 9: Family caring and minority populations

The aim of this series is to introduce a topic for thought and debate within the Family Caring sector. In particular, the series focuses on emerging, under-discussed, and perhaps difficult issues, as a way to stimulate debate.

Much of the supports and research undertaken with and about family carers presupposes that family carers in Ireland are white, heterosexual and Catholic. Statistically, that group is indeed the largest cohort of family carers. However, latest figures from Census 2016 illustrates the breadth of diversity within family carers in Ireland. Whilst many of the challenges faced by family carers from minority populations (such as those from ethnic minorities, religious minorities and those from the LGBT community) will be similar to those faced by the general population, each has particular issues acting as further complicating factors – such as racism, homophobia, or perhaps a lack of adequate access to information. Even when the problems faced are the same, the preferred solutions for these groups may not be.

This latest paper in the Care Alliance Discussion Paper series explores these issues and suggests some policy and support changes which may be useful to consider. 

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Strain on unpaid carers putting adult social care at increased risk of collapse

The strain on millions of unpaid carers is harming their health, jeopardising the care of loved ones they care for, and putting the adult social care system at an increased risk of collapse, council and care leaders are warning.

Contains link to case studies.

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Resilience in Caregivers of Partners With Young Onset Dementia: A Concept Analysis

Introduction: Over 200,000 Americans diagnosed with young onset dementia (YOD), dementia diagnosed prior to age 65, are cared for by family members. This can be costly to caregivers' physical and psychological health. Some adapt well to the caregiver role and are said to be resilient. Aim/Question: This paper builds on current understanding of the concept of resilience and applies this to caregivers of partners diagnosed with YOD. Method: Concept analysis. Results: Resilient caregivers exhibit attributes including determination, flexibility, positive thinking, self-efficacy, resourcefulness, social support and spirituality. Discussion: YOD affects caregiver's health. Much research has been done on interventions for dementia caregivers. These interventions do not necessarily meet the needs of YOD caregivers as they do not account for dynamics in the family. By recognizing what is resiliency in YOD caregivers, interventions can be developed that focus on characteristics that build these attributes. Implications for Practice: Understanding the concept of resilience related to caregiving for a partner diagnosed with YOD allows for future development, measurement, and evaluation of nursing interventions. Nursing staff are in a strategic position to provide effective interventions to enhance resilience among caregivers of YOD. 

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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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When Caregiving Ends: The Experiences of Former Family Caregivers of People With Dementia

Purpose of the Study: Numerous adverse physiological and psychological effects of family caregiving are documented in the literature. However, there is little knowledge about family caregivers after caregiving ends. The purpose of this study is to examine the health of former family caregivers and describe their experiences following the death of a care recipient with dementia. Methods: Eight former family caregivers were recruited using convenience sampling. Each caregiver participated in one semi-structured interview ranging from 45 minutes to 3 hours in length. The interviews were audio recorded and transcribed for qualitative content analysis. Results: Three overarching themes emerged from the data: (a) sleep disturbances, (b) changes in health status, and (c) learning to live again. Despite relief from caregiving duties, sleep disturbances in former family caregivers persisted for as long as 10 years post-caregiving. Caregivers reported changes in health such as acute health crises, ongoing illness, or a cascade of nonacute illnesses. Caregivers illustrated post-caregiving as a process of learning to live again, characterized by initial uncertainty about how to proceed in life and a reluctance to relinquish caregiving after years of identifying with the caregiver role. Implications: The results of this study suggest that there may be long-term effects of caregiving on health that persist well beyond the first year post-caregiving. Former caregivers would benefit from further research on the physical and psychological health of former caregivers after the first year of post-caregiving, the role of triggering events during post-caregiving, and interventions to meet the needs of former caregivers. 

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Informal Caregiver Stress

Research shows the stressful demands of caregiving to older family members can have negative effects on physical health. The effects on physical health may include: immune system functioning, heart rate reactivity, raised blood pressure levels, and increased risk of mortality among older spousal caregivers. Gender differences in caregivers' outcomes exist because, compared with male caregivers, female caregivers face higher levels of caregiving stressors, have fewer social resources, and report lower levels of psychological and physical health. Gender and education effects on health show that female caregivers experience more stress and have poorer health than male caregivers. African-Americans, unlike White caregivers, are more likely to provide care in collectivist versus individualistic caregiving systems. In the same notion, African-American caregivers are less likely to utilize formal support systems and African-Americans expressed stronger cultural reasons for providing care. 

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The experience of psychological distress in family caregivers of people with dementia: A cross‐sectional study

Purpose: To evaluate the degree of psychological distress in family caregivers of people with dementia. Design and Methods: A nonprobabilistic sample of 54 dyads (people with dementia and family caregivers) was recruited. A sociodemographic questionnaire, the Brief Symptom Inventory (BSI), and the Barthel Index were used for data collection. Findings: About half of the caregivers had significant levels of psychological distress. Caregivers showed high scores in some BSI dimensions: somatization, obsessive–compulsion, interpersonal sensitivity, anxiety, and paranoid ideation. Practice Implications: Alleviating the caregivers’ distress is likely to have positive effects on the overall health and capacity to care. Frameworks for providing palliative care to people with advanced dementia and support the caregivers would enhance the quality of care provided and may reduce the distress on the caregiver. 

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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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Creating an upward spiral: A qualitative study of caregivers' experience of participating in a structured physical activity programme

Family caregivers' physical and emotional well-being may be negatively impacted while in the caregiver role. Interventions to support caregiver health have largely focused on psychological support, with only a few studies to date evaluating the role of exercise. Of the exercise studies conducted, there has been one qualitative study examining caregivers' perspectives on the value and impact of this type of intervention. This qualitative study was part of a larger mixed methods investigation including a randomised controlled trial investigating the effects of a 24-week exercise programme for cancer caregivers conducted in western Canada. We aimed to explore cancer family caregivers' experience of participating in a structured exercise programme. We conducted face-to-face interviews with 20 of the participants from the exercise intervention and analysed transcribed data using Thorne's interpretive description as a guiding framework. Two main patterns characterised the experiences of the caregivers. The metaphor of a downward spiral represented the experience of being in the caregiver role, while the metaphor of an upward spiral represented the experience of participating in the exercise programme. Our findings highlight that caregivers valued the exercise programme, experienced positivity through exercise and the group-based format, and noticed improvements to their physical and emotional well-being.; © 2017 John Wiley & Sons Ltd.

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What seems to matter in public policy and the health of informal caregivers? A cross-sectional study in 12 European countries

In Europe, informal caregiving is frequent and is expected to grow. Caregiving has an impact on caregivers' health, but its effect may vary according to the policies of support that are available to caregivers. The aim of this study was to assess the association between the policies of support to caregivers available in 12 European countries and the health of caregivers, considering separately the policies based on financial help and those based on training and other non- financial services. We used data from 13,507 caregivers from 12 European countries from the fifth wave of the Survey of Health, Ageing and Retirement in Europe (SHARE) to build a path model. Poor health among caregivers was associated with living in a family-based care country (β = 0.50; 95% CI = 0.42-0.59), and with an increased extent of caregiving (β = 0.18; 95% CI = 0.15-0.22). Non-financial support measures seem to have a larger protective impact (β = -0.33; 95% CI = -0.38 - -0.28) on the health of caregivers than do financial support measures (β = 0.03; 95% CI = 0.01-0.04), regardless of the gender of the caregiver. According to our results, the currently available policies of support associated with better health among caregivers are those that: 1) provide them with some free time, 2) help them to deal emotionally with caregiving, and 3) give them skills to both improve the care situation and to deal with it better.;

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State of Caring 2018

A total of 7,397 carers and former carers responded to Carers UK’s annual State of Caring survey between March and May 2018. 

Only responses from the 6,828 people currently providing care who completed the survey are included in this report as it is designed to provide a snapshot of caring in 2018. However, Carers UK will be using the responses of former carers in other pieces of work throughout the year. 

Compared to the carer population as a whole, respondents to this survey were more likely to be female and caring for a high number of hours every week. 

Of respondents to the State of Caring Survey 2018 who are currently caring:

  • 75% live in England, 8% live in Northern Ireland, 9% live in Scotland, and 8% live in Wales.
  • 78% identify as female and 20% identify as male.
  • 24% consider themselves to have a disability.
  • 1% are aged 0-24, 4% are aged 25-34, 12% are aged 35-44, 30% are aged 45-54, 33% are aged 55-64, 15% are aged 65-74 and 5% are aged 75 and over. As fewer 1% of carers currently providing care who are under 18 took part in the survey, we have not explored results specifically for this group in the report. 
  • 3% are lesbian, gay or bisexual.
  • 12% also have childcare responsibilities for a non-disabled child under 18.
  • 38% are in paid work (49% full-time and 51% part-time).
  • 33% have been caring 15 years or more, 15% for between 10-14 years, 24% for 5-9 years, 25% for 1-4 years and just 3% have been caring for less than one year. 
  • 47% care for 90 or more hours every week, while 16% care for 50-89 hours, 24% for 20-49 hours and 5% care for 1-19 hours a week.
  • Most (75%) care for one person, 19% care for two people, 4% for three people and 2% care for four or more people.
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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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Carer Characteristics and Health, Wellbeing and Employment Outcomes of Older Australian Baby Boomers

Supporting caregivers and enabling continued workforce participation are central strategies in Australia's response to an ageing population, however these strategies have potential disadvantages for carers, particularly women, including reduced workforce participation and retirement income, and poorer health status. This paper explores the nexus between paid work and caregiving for Australia's baby boomer cohort as this group faces unprecedented pressures to manage paid work alongside caring longer and more intensively for family members, including grandchildren. A sample of 1261 men and women aged 60 to 64 completed the 2011-12 Life Histories and Health survey, a sub-study of the New South Wales 45 and Up Study. The survey collected data on sociodemographic, psychosocial, life history and health-related variables including caregiving and employment status. Around a third (32.5%) of the sample (52.2% female) were involved in some type of caregiving at the time. Compared to non-carers, carers reported lower workforce participation (45.8% versus 54.7% for non-carers) as well as poorer health, more mobility difficulties, lower quality of life and lower self-rated SES. Carers who also cared for grandchildren were more likely to be in part-time or no paid work compared to other carers. Working carers tended to be more highly educated, have fewer mobility difficulties, better self-rated health and higher SES than non-working carers. Male carers were more likely than female carers to be in full-time or no paid work. Results indicate that reduced workforce participation and health status of caregivers varies by gender and type of caregiving. Policy reforms are recommended to mitigate these adverse consequences on those providing care, their families, employers and the community.

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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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The experiences of caregivers of patients with delirium, and their role in its management in palliative care settings: an integrative literature review

Objectives: To explore the experiences of caregivers of terminally ill patients with delirium, to determine the potential role of caregivers in the management of delirium at the end of life, to identify the support required to improve caregiver experience and to help the caregiver support the patient. Methods: Four electronic databases were searched-PsychInfo, Medline, Cinahl and Scopus from January 2000 to July 2015 using the terms 'delirium', 'terminal restlessness' or 'agitated restlessness' combined with 'carer' or 'caregiver' or 'family' or 'families'. Thirty-three papers met the inclusion criteria and remained in the final review. Results: Papers focused on (i) caregiver experience-distress, deteriorating relationships, balancing the need to relieve suffering with desire to communicate and helplessness versus control; (ii) the caregiver role-detection and prevention of delirium, symptom monitoring and acting as a patient advocate; and (iii) caregiver support-information needs, advice on how to respond to the patient, interventions to improve caregiver outcomes and interventions delivered by caregivers to improve patient outcomes. Conclusion: High levels of distress are experienced by caregivers of patients with delirium. Distress is heightened because of the potential irreversibility of delirium in palliative care settings and uncertainty around whether the caregiver-patient relationship can be re-established before death. Caregivers can contribute to the management of patient delirium. Additional intervention studies with informational, emotional and behavioural components are required to improve support for caregivers and to help the caregiver support the patient. Reducing caregiver distress should be a goal of any future intervention.

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Formal and informal long-term care and the role of family carers: Czech Republic

The article discusses developments in long-term care and the availability of support for informal carers in the Czech Republic. Population forecast suggests that the process of demographic ageing in the Czech Republic will accelerate with the ageing of the baby boom cohorts of the 1940s and 1950s. Health and social policy has to address challenges of availability and quality of long-term care, and to develop support services to meet the needs of an ever growing number of older people and their families. The article analyses the long-term care system and the situation of family carers, and explores the challenges to be faced on the way to a more comprehensive long-term care system. 

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Joint declaration on post-diagnostic dementia care and support

A shared approach to improving the care and support for people with dementia, their families and carers receive following a diagnosis. The declaration sets out: a shared commitment to joint action across government, health, social care, the third sector and all other relevant partners; the ambition to deliver better quality post-diagnostic care; and the need to deliver integrated and effective services that meet the needs of people with dementia and their families and carers.

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Costs and consequences for the carers of people with dementia in Ireland

This study examines the economic and psychological costs of care for family carers of people with dementia in Ireland. The analysis is based on an opportunistic survey of 98 carers of people with dementia. The article presents new findings on Irish carers' own perceptions of optimal care provision and the value of the care provided in monetary terms. Family carers in the survey provide an average of just under 12 hours of specified care each day to people with dementia. Many carers refer to the constant nature of care, with very high figures recorded for surveillance and supervision of the person with dementia. Irish caregivers spend considerably longer than they would wish caring for their relatives with dementia, allowing their mental health to suffer in the process. Carers would also like to be paid for the work that they do. Current arrangements for monetary compensation are, however, selective and therefore inadequate to meet the needs of most carers.

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Developing supportive care for family members of people with lung cancer: a feasibility study

Purpose: Families provide crucial support, yet their own needs often go unrecognised and, as a consequence, remain unmet. The purpose of this study was to evaluate a newly developed supportive intervention for family members of patients with lung cancer.

Materials and methods: A consecutive convenience sample of 25 family members of people with lung cancer received an individualised supportive intervention from a support nurse over a period of 12 weeks. This involved in-depth assessment followed up with a tailored plan of ongoing support to address informational, emotional, social and practical needs. A concurrent mixed method design explored perceptions and outcomes of those receiving the intervention and assess its appropriateness, acceptability and feasibility. Data were collected through a semi structured telephone interview with family members, and support nurses maintained a contact log. A questionnaire addressed emotional well-being [general health questionnaire (GHQ-12)], quality of life [quality of life family version (Family QoL)] and needs for care [family inventory of needs (FIN)]—at baseline and week 12.

Results: Family members perceived they had derived benefit from the intervention. Certain elements clearly emerged as important for participants, including being listened to by someone who could facilitate emotional expression, being provided with individually tailored information and receiving practical help and advice. Outcomes mapped to five main areas: information needs, communication between family members, emotional well-being, being supported and facilitating family member’s role. There was a trend for more needs to be met and quality of life and emotional well-being to improve at week 12.

Conclusion: This study has demonstrated that a supportive intervention for family members of patients with lung cancer can be delivered to good effect by experienced cancer nurses. The active components of the intervention have been distinguished and provide the basis for development of a larger sufficiently powered trial.

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Carer preferences in economic evaluation and healthcare decision making

The preferences of informal carers are important to capture for healthcare decision making. This paper discusses how these preferences relate to the economic evaluation of health and care interventions. Three main issues are highlighted. First, there is a need to consider carer impact routinely in economic evaluations. Second, more debate is required around the ethical issues stemming from the inclusion of interdependent preferences in healthcare decision making. Third, there are a number of situations where carer and patient preferences may conflict and practical ways of representing and handling these conflicts would be useful.

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The medicines management needs of carers during an episode of mental health crisis

The article reviews the report "National Mental Health Development Unit 2010" highlighting the importance of involving carers particularly in crisis resolution and home treatment teams (CRHT), in managing medicines during a mental health crisis. The authors note the report's recommendation of developing training packages to help carers understand issues and enhance their understanding of mental health conditions and treatment options. They also recommend investigating the needs of young carers.

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Towards a culturally acceptable end-of-life survey questionnaire: a Bengali translation of VOICES

Aim To assess the cultural acceptability and appropriateness of an English end-of-life survey questionnaire translated into Bengali for use in east London.

Study design Group discussions with informal carers (n=3 groups) and professionals (n=1 group).

Sample and setting Informal carers within a Bengali-speaking community (n=26) in east London participated in three groups discussions led by three community workers trained in interviewing procedures. These data were followed up with one group discussion with bilingual health and social care professionals (n=6).

Analysis Data subject to content analysis.

Results Participants were supportive of the development of the translated questionnaire. However, attention should be paid to vocabulary, shared meanings, cultural equivalence and the ways people conceptualize health and illness, and death and dying.

Conclusions These findings, together with participants’ views on the administration of the questionnaire, will prompt revisions to the research approach when targeting ethnic and cultural groups in the future.

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Re-visioning social work education: an independent review

Norman Lamb, Minister of State for Care and Support at the Department of Health invited the Chair of Skills for Care to undertake this Independent Review, in the context of the changes to social work practice brought about by the Social Work Task Force and Social Work Reform Board, and their own recommendations for social work education. The review is based on evidence invited from as wide a field as possible, from the UK and internationally, of all those who have a stake in the education of social workers, including service users and carers, employers, educationalists, social work practitioners, students and others. Professor David Croisdale-Appleby considers whether social work education is ideally structured to best serve the changing nature of the profession. 

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The Triangle of Care: carers included

Purpose – The purpose of this paper is to describe the Triangle of Care, a project designed to provide a guide to professionals on how to better include and support carers in mental health services.

Design/methodology/approach – The paper presents a case study of the Triangle of Care.

Findings – The Triangle of Care provides an opportunity for services to address their obligations to carers and service users alike whilst improving their own skills and knowledge.

Originality/value – The paper offers insights into the project and provides a link for further information.

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Measures used to assess burden among caregivers of stroke patients: a review

Objective: To describe measures used to evaluate the burden of caregiving experienced by caregivers of stroke patients and their clinimetric properties. Design: A review of the literature was conducted to examine burden scales with regard to concept, feasibility, internal consistency, validity, reliability and responsiveness. Results: The literature search resulted in 45 measures of caregiver outcomes, including 16 different measures of caregiver burden. About half of the scales were used only once and were not further described. Nearly all instruments measure the various dimensions of burden (competency, negative feelings, social relations, participation problems, physical and mental health and economic aspects), but not in the same proportions. Most measures showed good internal consistency, and validity was demonstrated for all measures except one. However, not much is known about the reliability and responsiveness of these measures. Conclusions: No measure has proven superiority above others. Future research should focus on comparisons between existing instruments and on their reliability and responsiveness.

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All Work and no Play? Understanding the Needs of Children with Caring Responsibilities

This article draws on research with children who provide care for parents with serious mental health problems and signals ongoing research that uses photographic participation methods with these groups of vulnerable children. The intention of this article is to highlight the need to move away from popular and simplistic representations of children with caring responsibilities (young carers) as victims of their parents’ illnesses, as ‘little angels’ whose caring work is condoned through rewards or as (exploited) informal domestic workers whose childhoods are inevitably compromised by the caring activity they undertake. Recommendations are made for generating deeper understanding about the lives and needs of children who are affected by parental impairment that is congruent with the thrust of current UK policy, Every Child Matters and the 2004 Children Act. 

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The use of social healthcare resources and informal care characteristics care of immobilised homecare patients

Objective: To describe the use of social healthcare resources by immobilised patients and informal care characteristics and the level/degree of satisfaction with home care services.

Method: Descriptive observational study carried out in primary care. The target group were 369 randomly selected immobilised home care patients in the area of Albacete, Spain. The variables included were: socio-demographic data of the patient and carer; the use of social healthcare resources; perceived social support (DUKE-UNK questionnaire); family function (APGAR questionnaire); nursing care and home care services satisfaction (SATISFAD 10 questionnaire).

Results: 66.9% of immobilised homecare patients have high dependency and 18.6% have bedsores. The majority of informal carers are women (83.1%) with an average of 57.7 years of age (DE 15.1). The average intensity of care is 15.7 hours per day (DE 8.5) and the average length of care is 5 years. The average number of visits from nurses per month is 2.1 (DE 2.1), although this measurement is higher in patients with bedsores or multiple diseases. The most widely used social health care resources are telephone care (34.2%) and home care (20.3%), for which 65.6% of immobilised homecare patients receive dependency benefits. Overall satisfaction with home care is of a high degree.

Conclusion: Musculoskeletal disorders is the main reason for immobilisation in home care patients. Most informal carers are older women. The length and intensity of care is high and the main support comes from healthcare professionals. Patients make limited use of social healthcare resources.

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Who cares and how much: exploring the determinants of co-residential informal care

The importance of informal care provided inside the household (co-residential care) is widely acknowledged in policy circles. However, the factors that determine the likelihood and scale of provision are not fully understood. A two-part model (2PM) is used to investigate both participation and levels of provision. Random effects dynamic panel specifications are employed. Results show that co-residential informal care competes with other time demanding activities, such as childcare and employment. Wealthier individuals are less likely to be caregivers, whereas wealthier households have a higher tendency towards caregiving. Evidence of both substitution and complementarity is found between formal and informal care. Informal care and health status are significantly related, with carers more likely to report worse General Health Questionnaire scores than non-carers. Finally, significant dynamic effects are observed with the continuance of the provision of informal care being more likely than the initiation of such activity, while heavy commitment in the past increases the hours provided in the current period.

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Children and adolescents as caregivers: who they are and what they do. An international literature review (1990-2006)

With a growing body of research on the situation of adult family caregivers in Germany, hardly anything is known about the situation of children who are involved into the care of their relatives. This literature study is part of a research project that intends to close this gap. Primarily, English literature of the last 15 years was analysed to gain insight into specific characteristics of young carers and their families. There is no standard definition of young carers. The prevalence of young carers has been underestimated for a long time; for Great Britain it is 1.5% of all children under the age of 18. Children provide caregiving tasks at any age, and the amount of their help grows with their age. The majority of young carers live in single-parent families, and the single parents are mostly mothers. More than half of the family members in need of care suffer from chronic illnesses that affect the body. There is a wide range of caregiving tasks described in the literature; young carers do the same as adult informal carers. However no uniform categorical system could be found, which makes comparisons between studies almost impossible. This might be due to a lack of a theoretical framework in most of the studies. Since it can be assumed, that children in Germany may become young carers as well, their situation needs to be studied under the specific circumstances of the German health care system.

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How to ensure your service is responsive to the needs of carers: a guide and action planning tool for managers and staff working in the health service in Newcastle

This guide and action planning tool aims to assist staff working in the health service to implement carer related elements in various government guidance. This includes 'Caring for carers', 'National framework for mental health', 'National framework for older people', NHS plan 2001 and 'Valuing people'.

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"I wanted to learn how to heal my heart": family carer experiences of receiving an emotional support service in the Well Ways programme

Family carers of people with mental illness provide an immense contribution to society in caring for mental health consumers. However, carers can experience substantial burdens and poor health outcomes themselves. Recognition of their needs for education and support has led to the development of a range of family education programmes. Throughout Australia, the Mental Illness Fellowship Australia offers the Well Ways programme, a group-based, family-to-family, education programme that provides information and aims to increase carers' capacity to care effectively for themselves, their families, and the mental health consumers. This paper describes a qualitative evaluation of an emotional support service piloted in a Well Ways programme in rural Queensland, Australia. The pilot service comprised individual emotional support offered to family carers attending the weekly Well Ways group education programme. Six of eight family carers who received the emotional support engaged in semistructured interviews exploring their experience of receiving the support. Three themes emerged from their experience: dealing with difficult times, connecting through shared experience, and exploring different options. Family carers found the emotional support beneficial, and reported that it enhanced their capacity to manage their own well-being, as well as their caregiving roles.

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General practitioners, primary care and support for carers in England: can training make a difference?

As a part of the national carers' strategy, the Department of Health commissioned six pilot workshops spread across England for General Practitioners (GPs) and other primary healthcare workers. The six workshops were held during September and October 2009, arranged by the Royal College of General Practitioners and planned in consultation with the Princess Royal Trust for Carers. The workshops were delivered by one of two GPs and by a carer. The Department of Health commissioned an evaluation of the workshop programme. This paper reports on the attitudes towards and knowledge of carers by GPs and other primary care workers, such as community matrons, practice nurses, healthcare assistants, practice managers and receptionists. It also tracks changes over time from the questionnaire responses pre- and post-workshop and 3 months later in the GPs' and other primary care workers' response to carers. Prior to the workshops, GPs and other primary care workers saw primary care as having a significant role in directly assisting carers, especially with emotional support and in signposting to other services. However, there was a lack of knowledge about issues facing carers, limited confidence in assisting carers and few services within the primary care teams directly focussed on carers. The workshops were regarded positively by those who attended, and the evaluation found that there was a positive impact with GPs and other primary care workers reporting specific actions they had taken post-workshop to assist carers, greater confidence and awareness in working with carers, and increased knowledge about carers. The paper concludes by recommending how the pilot programme might be rolled out more widely.

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Informal care: the views of people receiving care

Informal care is perceived to be the best option for people who require assistance to look after themselves. National and international studies of informal care have focused on the carer, not on the care provided, or the needs and experiences of the care recipients. In the present study, 55 people receiving informal care (21 males and 24 females, mean age = 67.6) were surveyed to determine the type of assistance that they receive, perceptions of the quality of their care, feelings about being looked after by a carer and their perceptions of the services which would be useful. A random sample of 531 households were selected as part of a larger study into informal care in the west of Ireland. A total of 98 carers were identified and 55 of the people they looked after were well enough to participate in the study. Over two-thirds of carers assisted with household chores (e.g. cleaning, preparing meals and shopping). Other activities which carers assisted with included keeping the person safe from household accidents (62%), personal care (42%), and dressing and undressing (31%). Whilst most were very satisfied with the quality of care, a minority reported dissatisfaction, and stated that their carer showed signs of anger and frustration. Common concerns related to the health of the carer, their safety when the carer is not available and the cost of being cared for. Financial support for the person receiving care and the carer were the main priorities for these individuals. The present study points to a need for greater involvement of care recipients in planning services relating to informal care, and support and access to health professionals for people receiving care. People receiving care are also concerned about the level of financial support for themselves and their carers.

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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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Carers' experiences of assertive outreach services: an exploratory study

Background: Recent government policy has highlighted the needs of family and friends who provide support to mental health service users. Carers of assertive outreach (AO) service users may be particularly in need of support. However, little is known about their experiences and how services can support them. Aim: To explore the experiences of carers of individuals receiving an AO service. Method: Ten participants were interviewed using a semi-structured interview schedule. Interviews were transcribed and analysed using interpretative phenomenological analysis. Results: Participants were positive about the service they and their relatives received from AO teams. They described the service as flexible and responsive to their needs and they had developed close collaborative relationships with AO workers. AO workers were considered by carers to be an extension of their family system. AO interventions helped their relatives to regain independence and enabled participants to feel less burdened by their caring role, thereby improving the carer's quality of life. Conclusions: The unique way in which AO teams engage and work alongside service users and their families is greatly valued by carers.

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Training nurses to support carers of relatives with schizophrenia

Carers have an enormous amount of responsibility for the welfare and management of people with a mental illness in Britain, and many require help if they are to continue caring. Mental health nurses may be in a key position to offer support, but they are often unclear of what is required and how it should be delivered. Existing UK nurse-led psychosocial interventions for families often focus on the needs of the patient rather than the carer. This article describes a needs-led support service that has been designed for carers whose relatives are diagnosed with schizophrenia. It recognizes the importance of a collaborative partnership between carers and nurses. In 2000, 10 mental health nurses were trained to deliver this support to carers. An evaluation is currently underway. This article outlines the principles of the training programme and how it might enable nurses to meet the carers' needs.

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Predictors and consequences of perceived lack of choice in becoming an informal caregiver

Objectives: Using data from a national sample of informal caregivers to older adults, we identify predictors of lack of choice and the consequences of lack of choice in taking on the caregiving role.

Methods: A national telephone survey with 1397 caregivers was carried out to assess whether respondents had a choice in taking on the caregiving role, their demographic characteristics, the nature and duration of their caregiving experience, and its impact on their physical and psychological well-being. We compare caregivers who felt they had no choice in taking on the caregiving role to those who did.

Results: In total, 44% of caregivers reported a lack of choice in taking on the caregiving role. Highly educated, older caregivers caring for a younger care recipient with emotional or behavioral problems were most likely to report that they had no choice in taking on the caregiving role. Lack of choice is associated with higher levels of emotional stress, physical strain, and negative health impacts, after controlling for multiple confounds including level of care provided, relationship type, primary health condition of the care recipient, and demographic characteristics.

Conclusion: Lack of choice is an independent risk factor for the negative effects of caregiving, and clinicians should be vigilant to lack of choice as a marker of caregiver distress.

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The future's bright, but only if we get it right now

The author, from the organisation Rethink, gives his personal views on the current state of the mental health services; what users and carers would like their experience of mental health services to be; and the key areas to tackle in order to improve services.

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A summary of changes to direct payments

In November 2009 important changes to the Direct Payments scheme were introduced. New regulations extend the scheme to people who lack the capacity to consent, and to people with mental health problems who are subject to mental health and certain criminal justice legislation. Guidance for councils on direct payments has been updated to reflect these changes. This leaflet sets out these changes and explains where to find more information.

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The experience of caring for older people with dementia in a rural area: using services

Reports on findings from the carer component of the Gwynedd Dementia Study. It is based on carer interviews, using quantitative and qualitative data. It describes the carers, their perceptions of their dependents' problems, the common challenges they face, their experiences of formal and informal support and, with reference to the literature, identifies implications for policy and practice. Levels of formal service inputs were low, but most of the carers appeared to receive the services they needed. Problems are primarily associated with crisis support and long-term care is accepted reluctantly. Suggests that community care dementia specialists could play a supporting role for carers.

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Carers at the centre

Most health and social services professionals understand that carers play an important part in the care management of a person with an illness or disability, but there needs to be a greater recognition of the personal needs of carers. Roberta Ford gives a personal insight into the work of carers’ support centres.

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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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The keys to life: improving quality of life for people with learning disabilities

The same as you?’ (2000) was the original 10-year programme designed to meet the needs of people with learning disabilities in Scotland. It was highly successful in shifting the balance of care to support more people to live in the community. This new 10-year strategy sets out a vision for improved partnership working to deliver better outcomes for people with learning disabilities, and their families and carers. It has more than 50 recommendations, most of which are aimed at health. The strategy also covers commissioning of public services; independent living; shifting the culture and keeping safe; breaking stereotypes; the needs of people with profound and multiple disabilities; criminal justice; and complex care. It includes good practice examples and case studies. Appendices include a glossary and weblinks to key organisations.

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Money going in, but will care come out?

Safeguards needed if informal carers are to be given cash payments to buy care packages. [(BNI unique abstract)]

Personal social services survey of adult carers in England, 2014-15

The Personal Social Services Survey of Adult Carers in England is a biennial survey that took place for the second time in 2014-15. The survey covers informal, unpaid carers aged 18 or over, caring for a person aged 18 or over, where the carer has been assessed or reviewed, either separately or jointly with the cared-for person, by social services during the 12 months prior to the sample being identified. Carers were sent questionnaires, issued by Councils with Adult Social Services Responsibilities (CASSRs), in the period October to November 2014, to seek their opinions on a number of topics that are considered to be indicative of a balanced life alongside their caring role. Further information about the survey, including the methodology, can be found in the 'Methodology and Further Information' document in the Resources section of this page.

National-level information is provided in this report. Annex files containing further national-level data, and data for all CASSRs in England, and the data used to produce this report (as a CSV file) are available in the Resources section below.

A weighting methodology has been introduced for the 2014-15 survey. Although the impact of this change is small, in order to be able to make direct comparisons over time, the results from the 2012-13 survey have been recalculated using this new methodology, and any comparisons made to 2012-13 data in this report refer to these re-calculated figures. Consequently, 2012-13 figures presented in this report may not be an exact match to those in the original, experimental statistics release for 2012-13. The full set of recalculated results for 2012-13 are available in an annex table. The time series annex presents 2012-13 results calculated using the new weighting methodology. Further details about the new weighting methodology and other changes to the survey as compared to 2012-13 are available in the methodological change notice for this report, which is available via the Related Links section of this page.

Findings from the survey are used to populate a number of measures in the Adult Social Care Outcomes Framework (ASCOF); these outcome scores will be published as part of the full suite of ASCOF outcomes on 6 October.

CASSRs reported that 286,910 carers were assessed or reviewed in the 12 months prior to the 2014-15 survey. 57,380 out of a sample of 131,105 carers responded to the survey, which is a response rate of 44 per cent (down two percentage points from 2012-13).

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The cost of unpaid caring

Caring takes time and, as we know, time costs. With an ageing population that is living longer, there is less time and less money to be allocated to older people. This article looks at the role and contribution of informal carers to the social care system, and says that more should be done to recognise their skills and knowledge, and better support should be given to help prevent their ill-health, thus helping to reduce the rising cost of formal care to local social services. 

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The long-term consequences of partnership dissolution for support in later life in the United Kingdom

There has long been an interest in the United Kingdom about whether and how changes in family life affect support for older people, but nevertheless the consequences of partnership dissolution for late-life support have been little researched. Using data from the British Household Panel Study (1991–2003), this study investigated the longitudinal association between partnership dissolution and two types of support for 1,966 people aged 70 or more years: (i) informal support from children in the form of contacts and help (e.g. household assistance including care), and (ii) formal support from community care services (i.e. health visitor or district nurse, home-help and meals-on-wheels). The paper also examines the level of reported support among: (i) all parents aged 70 or more years and (ii) 1,453 unpartnered parents in the same age group (i.e. those lacking the most important source of support in later life: a spouse). We found diversity in the experience of partnership dissolution in the past lives of people aged 70 or more years. Patterns of support varied by the respondent's age, whether partnered, the timing and type of partnership dissolution, and by gender, having a daughter and health status. Overall, however, partnership dissolution did not show the expected detrimental relationship with later-life support. Health needs and increasing age were strongly associated with increases in contact and informal and formal help, regardless of family history.

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Community provision for informal live-in carers of stroke patients

Stroke is common and disabling. Most stroke patients are cared for at home by informal carers. This study of informal carers of stroke patients measured service provision and satisfaction with different aspects of community care received by these carers. Dissatisfaction was expressed with training and information provision for carers, communication between carers and community services, speed of response and coordination of community services, and perceived support. Problems of information provision were most marked for those patients with most disability and/or older carers.

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The impact of location on satisfaction with dementia services amongst people with dementia and their informal carers: a comparative evaluation of a community-based and a clinic-based memory service

Background: The development of effective medication for the treatment of Alzheimer's disease led to an expansion in the use of memory clinics ther clinic-based services for the delivery and monitoring of the drugs. In contrast, there is an increased emphasis on providing home and community based service delivery for a range of illnesses including dementia.

Methods: This paper reports the findings of an evaluation study comparing a clinic-based and a community service. A convenience sample of 10 service users and carer dyads took part in in-depth qualitative interviews. Service users were diagnosed with mild to moderate dementia of Alzheimer's type. Interviews were recorded, transcribed and subsequently analyzed using template analysis.

Results: Service users and carers were satisfied with both services, with determinants of satisfaction differing between the two services. Issues relating to the location and spatial design of services, comfort, familiarity, communication with staff, and ease of use are highlighted as important determinants of satisfaction amongst service users and their carers.

Conclusion: This study has implications for person-centred care practices in service delivery and for the future design of mental health services for people with dementia.

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New deal for carers: Employment Task Force report

The vast majority of working age carers are in paid work or would like to work, either now or at some point in the future. There are 4.3 million working age carers in Great Britain. Two-thirds already combine paid work and care. Over half (55%) of those who are not working say they want to do so (CES Study1). But while carers would like the opportunity to continue in paid work, caring obligations can often make this impossible.

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Carer experiences of life after stroke – a qualitative analysis

Aims and objectives. Carers' experiences of caring for a stroke survivor were explored, including reactions and changes in their lives.

Method. A phenomenological approach was taken to the collection and analysis of data. Semi-structured interviews lasting an average of 43 min were carried out with nine informal carers in their own homes. All were married to someone who had survived a stroke.

Results. An overarching theme emerged, entitled: ‘lives turned upside-down’. It took time for participants to understand the long-term impacts of stroke. Carers experienced increased caring and domestic workloads alongside reduced participation and altered expectations of life. They found emotional and cognitive changes in their partners particularly distressing, and would have valued more information and help with adjusting to the increased emotional, physical and cognitive workload of caring.

Conclusions. It is important to support carers of people who have survived a stroke in adjusting to their changed lifestyles. This may affect their quality of life as well as sustainability of caring, and requires further research.

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Global action against dementia: G8 Dementia Summit communique

The G8 Health Ministers met at the G8 Dementia Summit in London on 11 December 2013 to discuss how to shape an effective international response to dementia. They note the socio-economic impact of dementia globally, and that costs are expected to increase significantly if therapies to prevent dementia and improve care and treatment are not developed and implemented. This communique concerns issues relating to research and innovation; leadership, cross-sector partnerships and knowledge translation; supporting people affected by dementia and their carers; and reducing stigma and fear. The communique is signed by the G8 Health and Science Ministers (from the UK, Canada, France, Germany, Italy, Japan, Russia and the United States). They conclude that they will continue their efforts to work together in line with the commitments in the Declaration and Communiqué, but recognise that dementia is an issue which affects people in countries throughout the world. Consequently, they encourage  all countries and multilateral organisations to come together and take action to reduce the risk to health and to economic development which dementia currently presents. 

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Carers in the region: a profile of the North West

The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the North West region. In 2001 there were 722,122 carers in the North West region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the North West region.

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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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Contracting one's family members: the Dutch care allowance

This chapter focuses on systems of payment for social care in the Netherlands where an elaborate system was developed in the 1990s of 'personal budgets', supplied directly to care users and heavily regulated, which enabled them to pay relatives, friends and neighbours for appropriate help. Despite the efficiency and popularity of the PGB (Dutch Care Allowance or personal budget) the Dutch government is committed to reducing the scope and costs of the scheme. The chapter reviews the PGB in 2004, the impact of the subsequent changes and the PGB's uncertain future. Statistics supply background to the demographic context in the Netherlands with formal services assisting approximately half the heavily impaired population aged 55 or over and many fewer with less serious disabilities. The chapter moves on to policy on income, health, care and well being for older people and traces the origins of the PGB. The 2001 'Shifting Boundaries' study interviewed 15 budget holders and 14 helpers. Carers' situations and wages [...]

Outcomes for users and carers in the context of health and social care partnership working : from research to practice

There is currently much policy emphasis on both partnership working between health and social services in the UK and on the outcomes delivered by services. This article provides an account of two consecutive projects centred on these two themes. The first project, at the University of Glasgow, sought to address the lack of evidence about the outcomes delivered to service users by partnerships. Following from this project, the Joint Improvement Team of the Scottish Government commissioned the researchers to develop a toolkit to involve users and unpaid carers in performance management in community care in Scotland. The remit of this second project expanded during 2007 as it became linked with the development of the emerging National Outcomes Framework for community care in Scotland. This article outlines the outcomes‐based piloting work currently under way in Scotland.

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Young carers say: 'read all about us!'

Tara Purdy never dreamed she would one day see her articles in print. But she was one of the lucky ones whose article was chosen to appear in the pages of an annual glossy magazine.

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Promoting participation of people with dementia in research

Dementia is a neurodegenerative disorder that can have a severe effect on the quality of life of individuals with the condition, and can place considerable strain on informal carers and healthcare systems. Research is required to identify ways to prevent or delay the onset of dementia. The government is committed to dementia research, yet funding for dementia research is eclipsed by funding for research into other conditions. Moreover, dementia research can only progress if individuals with the condition participate in research studies. This article discusses barriers associated with research into dementia and describes a UK government initiative, Join Dementia Research, which supports research participation for people with dementia.

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Carers in the region: a profile of the West Midlands

The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the West Midlands region. In 2001 there were 556,689 carers in the West Midlands region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the West Midlands region.

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Talking about care: two sides to the story

Despite its familiarity, the realities of care are both complex and contested. This book offers a unique approach to scrutinising the co-existence of both care and abuse in relationships. It demonstrates ways of increasing critical reflexivity when working with people involved in difficult care relationships. The book emphasises that when talking about care, we need to care about talk. Discourse analysis is introduced as a method of investigating relationships, policy and literature in informal care. Analytic tools are considered alongside case studies to illustrate how both carer and caree construct their relationship and account for difficulties with each other. The book addresses key questions, including: What can we learn by muddying the false polarities between `care/abuse' and `carer/caree'? How do carers and carees use life histories to explain troubled relationships? What can discourse analysis add to how we make sense of individual carer/caree accounts? How can health and social care practitioners [...]

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The impact of the quality of relationship on the experiences and wellbeing of caregivers of people with dementia: A systematic review

Background: Relatively little attention has been given to the effects of caregiving context on the experience of family members providing care for a person with dementia. This review aims to examine the impact of caregiving on the quality of the relationship between caregiver and care-recipient and the impact of the quality of the relationship between the caregiver and care-recipient on the caregiver's and care-recipient's wellbeing.

Methods: This was a systematic review. Fifteen quantitative studies were identified that examined the quality of the relationship between caregivers and care-recipients who had dementia, meeting the criterion of using a measure of relationship quality beyond a single item.

Results: The findings show that caregiving can have an impact on the quality of the relationship between caregiver and care-recipient. In addition, pre-caregiving and current relationship quality appear to have an impact on caregiver's wellbeing. The care-recipient's needs for help with activities of daily living and level of behavioural problems were found to influence the caregiver's perceptions of relationship quality.

Conclusions: Future research should examine both current and pre-caregiving relationship quality. A better understanding of the role of relationship quality in determining the outcomes of caregiving will aid the development of more effective interventions for caregivers.

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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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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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Palliative care: fourth report of session 2003-04; volume 1; report together with formal minutes

Currently, around 56% of people die in hospital, 20% at home, 20% in nursing or residential homes and 4% in hospices. Yet surveys suggest that the majority of people would prefer to be supported to die in their own homes. We note the recent economic analysis which Marie Curie has produced of the potential cost benefits arising from a shift towards more patients dying at home and recommend that the Department assesses this carefully. We welcome the fact that the Government is considering legislation to grant extra rights to carers and recommend that it provides for a period of paid leave for them. We recommend that the Department reviews the place of domestic support within the spectrum of social care services and ensures that people’s needs for domestic help are adequately met. We were concerned to note the variation in the criteria for continuing healthcare between Strategic Health Authorities and recommend that national criteria for continuing care should be developed. Many of our witnesses drew our attention to disputes between health services and those providing personal social care for the terminally ill. Unseemly arguments about who should pay for different elements of a care package are especially abhorrent in palliative care, and we call for an integrated structure in the delivery of care. We also seek the inclusion of hospices or specialist care units in the ambit of the Community Care (Delayed Discharges etc.) Act to ensure that higher priority is not attached to other patients in dealing with delayed discharges. 

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Health care experiences of people with dementia and their caregivers: a meta-ethnographic analysis of qualitative studies

BACKGROUND: Understanding the health care experience of people with dementia and their caregivers is becoming increasingly important given the growing number of affected individuals. We conducted a systematic review of qualitative studies that examined aspects of the health care experience of people with dementia and their caregivers to better understand ways to improve care for this population.

METHODS: We searched the electronic databases MEDLINE, Embase, PsychINFO and CINAHL to identify relevant articles. We extracted key study characteristics and methods from the included studies. We also extracted direct quotes from the primary studies, along with the interpretations provided by authors of the studies. We used meta-ethnography to synthesize the extracted information into an overall framework. We evaluated the quality of the primary studies using the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist.

RESULTS: In total, 46 studies met our inclusion criteria; these involved 1866 people with dementia and their caregivers. We identified 5 major themes: seeking a diagnosis; accessing supports and services; addressing information needs; disease management; and communication and attitudes of health care providers. We conceptualized the health care experience as progressing through phases of seeking understanding and information, identifying the problem, role transitions following diagnosis and living with change.

INTERPRETATION: The health care experience of people with dementia and their caregivers is a complex and dynamic process, which could be improved for many people. Understanding these experiences provides insight into potential gaps in existing health services. Modifying existing services or implementing new models of care to address these gaps may lead to improved outcomes for people with dementia and their caregivers.

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Carers strategy assessed two years on

Much of the 150million earmarked by the government to help carers never reached them. Where PCTs did pass on funds it has made a crucial difference. The author reports. [Journal abstract]

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‘It’s all changed:’ carers’ experiences of caring for adults who have Down’s syndrome and dementia

A qualitative interview study was undertaken to determine the information and support needs of carers of adults who have Down's syndrome and dementia. The data were analysed thematically. Carers' information and support needs were seen to change at pre-diagnosis, diagnosis and post-diagnosis. Helping carers to manage the changing nature of the adult with dementia is seen to be an essential part of the health professional's role.

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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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Testing Twigg and Atkin's typology of caring: a study of primary care professionals' perceptions of dementia care using a modified focus group method

The present article explores professional attitudes to family members supporting an older person newly diagnosed with dementia. It draws on professional perspectives derived from a series of 24 multidisciplinary workshops held in the UK, analysed using a typology developed by Twigg in 1989. The primary care workers' understanding of carers' needs and circumstances fitted best with Twigg's models of carers as resources and co-workers, but showed limited awareness of carers' responses and attitudes to caring. It is argued that professional assumptions about family members' roles when dementia is recently recognised among older people expand definitions of carers, but still confirm their instrumental role. 

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Health-Promoting Self-Care in Family Caregivers

Caregiving for family members with cognitive impairment is stressful and time consuming. Because of the attention needed to manage the memory and behavior problems of the care receiver, family caregivers have little time to attend to their own health needs. Most research related to the health of family caregivers has been conducted within a stress-illness framework. Fewer researchers have studied caregiver health from a health-promotion paradigm. The purpose of this study was to compare health-promoting self-care behavior in family caregivers with demographically matched noncaregivers and to investigate the mediational effect of health-promoting self-care behavior on the relationship between stress and well-being. Findings revealed that family caregivers scored significantly lower on all measures of health promotion, with the exception of Nutrition and Number of Medications, and significantly higher on Barriers to Health-Promoting Actions. Health-promoting self-care behavior acted as a mediator to reduce the effect of caregiver stress on general well-being.

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End-of-life issues in acute stroke care: a qualitative study of the experiences and preferences of patients and families

The aims of this qualitative study were to identify patients’ and family members’ experiences of acute stroke and their preferences for end-of-life care. Twenty-eight purposely sampled patients with an acute stroke who had high (n = 13) and low (n = 15) disability were selected from 191 sequential cases admitted to two general hospitals in north-east England. In addition, 25 family members of other stroke patients were recruited. Views about current stroke services and preferences for end-of-life care were elicited in semi-structured interviews. Communication between patients and family members and healthcare professionals was consistently highlighted as central to a positive experience of stroke care. Honesty and clarity of information was required, even where prognoses were bleak or uncertain. Patients and family members appeared to attach as much importance to the style of communication as to the substance of the transfer of information. Where decisions had been made to shift the focus of care from active to more passive support, families, and where possible patients, still wished to be included in ongoing dialogue with professionals. Where patients were thought to be dying, family members were keen to ensure that the death was peaceful and dignified. Families reported few opportunities for engagement in any form of choice over place or style of end-of-life care. No family member reported being offered the possibility of the patient dying at home. Uncertainty about prognosis is inevitable in clinical practice, and this can be difficult for patients and families. Our findings demonstrate the importance of improving communication between patient, family and health professionals for seriously ill patients with stroke in UK hospitals.

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Informal caring in England and Wales - Stability and transition between 2001 and 2011

Informal caring is of significant and increasing importance in the context of an ageing population, growing pressures on public finances, and increasing life expectancy at older ages. A growing body of research has examined the characteristics associated with informal care provision, as well as the impact of caring for the carer's physical and mental health, and their economic activity. However, only a relatively small body of literature has focused on the study of ‘repeat’ or continuous caring over time, and the factors associated with such trajectories. In 2001, for the first time, the United Kingdom census asked about provision of informal care, enabling identification of the prevalence of informal caregiving at a national level. This paper follows up informal carers from the 2001 Census in order to examine their characteristics and circumstances 10 years later using a nationally representative 1% sample of linked census data for England and Wales, the Office for National Statistics Longitudinal Study. The analysis classifies the range of possible combinations of caring and non-caring roles between 2001 and 2011, focusing on the characteristics of those who were providing care at one, or both, time points. Among other results, the analysis identified that, among those who were carers in 2001, caring again in, or continuing to care until, 2011 was associated with being female, aged between 45 and 54 years in 2011, looking after the home, and providing care for 50 hours or more per week in 2001. Such results contribute to our understanding of a particular group of informal carers and provide a more nuanced picture of informal care provision at different stages of the life course.

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Family caregiving and congestive heart failure. Review and analysis

BACKGROUND: There is increasing evidence that discharge planning and post-discharge support for CHF patients can contribute greatly to the medical management of heart failure (CHF) in the community and that the quality of the CHF patient's close personal relationships can influence outcome in CHF. However, there has been little research on the impact of CHF on the family or the role of the family in the management of the condition. In this paper, we provide a review and analysis of studies that have explicitly investigated these issues in the informal carers of CHF patients.

RESULTS OF THE REVIEW: Sixteen papers were identified that examined the role and/or impact of informal caregiving for CHF patients. Our main findings were: demands specific to CHF caregiving were identified, e.g., monitoring complex medical and self-care regimen, disturbed sleep and frequent hospitalisation of patients. Relatively high levels of emotional distress were identified in CHF caregivers. Few studies explicitly investigated the role of informal carers in the management of CHF. Studies were limited in number, scope and quality.

CONCLUSION: Caring for a family member with CHF can affect the well-being of those responsible for care, which may have consequences for the CHF patient's health. Further studies are needed to clarify these issues and to examine the role of informal caregivers in the management of CHF in the community.

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Informal carers and the primary care team

The number of carers in the community is rising, and the importance of general practice in providing supportfor them has been highlighted. Caring for a disabled friend or relative has been shown to be harmful to the health of the caregiver and changes in social and family structure have led carers to become isolated and more reliant on the formal support services. However, many carersfeel that GPs do not understand their needs, and in turn many GPs and nursesfeel that they lack the relevant resources and training to take a more proactive role. The shift from hospital to community-based care and the blurring of social roles of responsibility puts additional pressure on the carers and community services. However general practice is in the best position to help and there are many things that can be done by primary care teams, such as providing information about available support, benefits and local services, which would be appreciated by informal carers.

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Combating stigma

Contributors to this DVD talk from personal experience about the social impacts of living with a mental illness, including stigma and discrimination. Content includes the experiences of two carers and two people who have had experience of mental health problems. In addition, Professor Graham Thornicroft talks about the recent research evidence in nine key areas. Additional clips of other people's experiences also add to the evidence in these nine areas.

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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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It's time to give young carers what they've been asking for

The number of young carers in the UK is increasing. The official figure is 175,000 but this is likely to be a massive underestimate.

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It's a different thing

Often the needs of carers of people with dual diagnosis are ignored when they too may be doubly isolated and unsupported. Reports on a pilot two-day training workshop for carers in Camden and Islington Mental Health and Social Care NHS Trust, based on training provided for the trust's community and inpatient mental health staff. Discusses what both staff and carers found useful about the workshops.

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Enhancing the experience of carers in the chemotherapy outpatient setting: an exploratory randomised controlled trial to test impact, acceptability and feasibility of a complex intervention co-designed by carers and staff

Purpose: Supporting someone through chemotherapy can be emotionally and physically demanding. However, research has yet to establish the type of support carers require or the best way to provide this. This study tested the feasibility and acceptability of a complex intervention for carers that was co-designed by staff and carers of patients starting chemotherapy.

Methods: Forty-seven carers were recruited, randomised between the intervention (n = 24) and control (n = 23) groups. A questionnaire was completed pre- and post-intervention measuring knowledge of chemotherapy and its side effects, experience of care, satisfaction with outpatient services, coping and emotional wellbeing. The intervention process was evaluated by carers and healthcare professionals (HCPs) in focus groups.

Results: Recruitment to the study was unproblematic and attrition from it was low, suggesting the intervention and study processes were acceptable to patients and carers. Carers in receipt of the ‘Take Care’ intervention reported statistically significantly better understanding of symptoms and side effects and their information needs being more frequently met than carers in the control. Confidence in coping improved between baseline and follow-up for the intervention group and declined for the control although differences were insufficient to achieve statistical significance. There was no significant difference between the two groups’ emotional wellbeing. HCP and carer focus groups confirmed the feasibility and acceptability of the intervention.

Conclusions: The ‘Take Care’ intervention proved acceptable to carers and HCPs and demonstrates considerable promise and utility in practice. Study findings support the conduct of a fully powered RCT to determine the intervention’s effectiveness and cost-effectiveness.

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An assessment of the relationship between informal caring and quality of life in older community-dwelling adults - more positives than negatives?

The main objective of the study was to apply the recently developed Index of Capability (ICECAP-O) instrument to measure and value the quality of life of a representative sample of the older South Australian population (aged ≥ 65 years) according to carer status. A Health Omnibus survey including the ICECAP-O instrument, carer status (informal carer vs. non-carer) and several socio-demographic questions was administered in 2009 as a face-to-face interview to 789 individuals aged 65 years or older in their own homes. A total of 671 individuals (85%) characterised themselves as a non-carer and 115 individuals (15%) characterised themselves as an informal carer. In general, carers exhibited relatively high quality of life as measured by the ICECAP-O, with carers having comparable mean ICECAP-O scores to non-carers in the general population [carers: mean (SD) 0.848 (0.123), non-carers: mean (SD) 0.838 (0.147)]. The results of the multivariate regression model for the total sample indicated statistically significant variations in overall ICECAP-O scores according to age (with younger participants tending to have slightly higher scores on average), country of birth (with those participants who were born in Australia having higher scores on average than those who were born elsewhere) and household income (with participants with higher income levels having higher scores on average). The results of the multivariate regression model differentiated by carer status also indicated some important differences. Specifically, average ICECAP-O scores were noticeably lower for carers who are separated or divorced and for carers who lived alone and these differences were statistically significant. The study findings provide support for the existence of process utility in informal care-giving. The provision of informal care may be associated with a positive impact upon quality of life for many caregivers, which may mediate the negative aspects arising from the burden associated with informal care-giving.

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Resource pack designed for young carers

Barnardo’s, the children’s charity, has produced a revised version of its resource pack, Keeping the Family in Mind, after the first 500 packs sold out.

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Palliative and end of life care toolkit

This toolkit provides links to a range of resources to support GP practices and health professionals in ensuring patients nearing the end of life, and those close to them, receive the highest quality of care and support. It includes tools, guidance, current best practice policy, and legislation for healthcare professionals. It also provides links to training resources to help with continuing professional development and audit tools to evaluate practice. A section providing information for patients, informal carers, and those close to someone nearing the end of life is also included. Developed in partnership with Marie Curie and the Clinical Innovation and Research Centre, the toolkit will be updated on a regular basis.

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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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Carer knowledge and perception of healthy lifestyles for adults with intellectual disabilities

Carers can have a significant impact supporting people with intellectual disabilities to make healthy lifestyle choices. This study examines carers' training needs on diet and physical activity. A cross-sectional survey was undertaken of the knowledge and perceptions of carers supporting adults with intellectual disabilities. An interviewer administered questionnaire was used to examine carer knowledge of public health recommendations on diet and physical activity; perceptions of the benefits of healthy diets and physical activity levels; and the carer views on the barriers to change experienced by individuals with intellectual disabilities. Sixty-three carers took part in the study. They generally had a low level of knowledge around public health recommendations on diet and physical activity. Greater importance was attributed to the health benefits of diet than physical activity. Carers rated intrapersonal barriers to change within the person with intellectual disabilities as more important, than interpersonal or external barriers to change, with significant differences in perceived barriers relevant to diet and physical activity. Carers supporting adults with intellectual disabilities have significant training needs relevant to promoting healthy lifestyles. This highlights the opportunity to promote health improvement via the development, and provision, of effective training initiatives.

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Time costs associated with informal care for colorectal cancer: an investigation of the impact of alternative valuation methods

Background: A societal perspective in economic evaluation necessitates that all resources associated with a disease or intervention should be valued; however, informal care time costs are rarely considered.

Objective: We estimated time allocated to care by informal carers of colorectal cancer survivors; and investigated the impact of applying alternative valuation methods to this time.

Methods: Colorectal cancer cases (ICD10 C18-C20) diagnosed 6–30 months previously and identified from the National Cancer Registry Ireland were invited to provide details of informal carers. Carers completed a postal questionnaire. Time estimates per week associated with hospital-related and domestic-related care activities were collected for two phases: diagnosis and initial treatment (initial 3 months) and ongoing care (previous 30 days). Seven valuation scenarios, based on variants of the opportunity cost approach (OCA), and the proxy good approach (PGA), were considered. The base-case was OCA with all carer time valued at the average national wage.

Results: We received 154 completed questionnaires (response rate = 68 %). Average weekly time allocated to caring was 42.5 h in the diagnosis and initial treatment phase and 16.9 h in the ongoing care phase. Under the base-case, average weekly time costs were €295 (95 % CI 255–344) for hospital-related activities and €630 (95 % CI 543–739) for domestic-related activities in the diagnosis and initial treatment phase and €359 (95 % CI 293–434) in the ongoing care phase. PGA estimates were 23 % below the base-case. Only one alternative scenario (occupation and gender-specific wages for carers in paid work and replacement wages for non-working carers) surpassed base-case costs, and the difference was modest.

Conclusions: Overall, significant time is associated with informal caring in colorectal cancer. Different time valuation methods can produce quite different cost estimates. A standardised methodology for estimating informal care costs would facilitate better integration of these into economic evaluations.

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People with learning disabilities, carers and care workers awareness of health risks and implications for primary care

Background. People with learning disabilities have become increasingly exposed to health risk with the move to community living. Yet, health promotion is poorly developed with a heavy reliance on primary care.

Objectives. To elicit the perceptions of people with learning disabilities, carers and care workers regarding risk factors associated with cardiac disease.

Methods. A qualitative approach was adopted incorporating semi-structured interviews based on vignettes. Twenty people with mild learning disabilities, 10 carers and 10 care workers were recruited. Data were analysed using Miles and Huberman's five-fold process.

Results. In total, 29 women and 11 men were interviewed. A range of health risks was identified with different patterns across groups. There were common concerns around diet. Approximately 50% of participants also had worries regarding ‘excessive computer usage’, often related to physical inactivity, and a similar proportion identified social isolation as a risk. The importance of safeguarding personal autonomy was stressed in all three groups.

Conclusion. We demonstrated the feasibility of engaging with people with mild learning disabilities regarding health improvement. Participants recognized not only risks but also the subtle interplay of different factors, reflecting a grasp of the complexity of health promotion. Approaches within primary care to health improvement need to acknowledge this level of awareness.

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Health inequalities and informal care: end of project report

This report describes research that set out to measure, monitor and evaluate health inequalities associated with the provision of unpaid care. It outlines the scope and design of the project and presents the key findings. The adverse health effects of caring are primarily psychological and often manifest themselves as symptoms of anxiety, depression and social dysfunction. Caringrelated inequalities in psychological well-being are quantifiable and significant; they are most pronounced at key turning points in the caring trajectory and in the more demanding care situations. Caregiving is associated with an increased risk of both onset and recurrent distress, and legacies of poor health persist beyond the end of caregiving. An increased risk of mental and psychological distress attributable to caring activities affects a substantial minority of carers who provide long hours of care over extended spells. Carers who provide at least 20 hours care per week are often at greatest risk of poor health and adverse health changes because of their caring responsibilities. Overall, women face greater risk of psychological distress because of their caring responsibilities than men in comparable care situations. Caring for a spouse or partner is particularly associated with additional health problems beyond those that might be attributable to other determinants of health. Caring-related inequalities in psychological distress did not diminish during the 1990s indicating that the evidence for addressing carers’ health needs is as compelling as it ever was. Taken together, the findings begin to validate caregiving as an underlying social determinant in the creation of health inequalities, and help to identify the circumstances in which caregiving might be an important variable in epidemiological analysis. A final section considers implications for policy and practice towards carers and concludes by suggesting that caregiving should be recognised by policy makers, service planners and practitioners as a public health issue and become part of the health inequalities agenda. 

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Together for mental health: annual report 2013-14

"Together for mental health" is our ambitious strategy aiming to improve the mental health of the people of Wales and setting out our vision for 21st century mental health services. It is our first mental health strategy to cover all ages and centres on the 6 high level outcomes set out below:

a. The mental health and well-being of the whole population is improved.

b. The impact of mental health problems and/or mental illness on individuals of all ages, their families and carers, communities and the economy more widely, is better recognised and reduced.

c. Inequalities, stigma and discrimination suffered by people experiencing mental health problems and mental illness are reduced.

d. Individuals have a better experience of the support and treatment they receive and have an increased feeling of input and control over related decisions.

e. Access to, and the quality of preventative measures, early intervention and treatment services are improved and more people recover as a result.

f. The values, attitudes and skills of those treating or supporting individuals of all ages with mental health problems or mental illness are improved. 

This is the second annual report on the implementation of the Welsh Government mental health strategy. 

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A bulletin on the personal well-being of people who need care and support and carers who need support, 2014-15

This bulletin provides a picture of the wellbeing of people who received care and support, and carers who received support in the last 12 months, and where possible, provides a comparison to the rest of the respondents in the survey (those that had not received any care and support services). Due to the small number of respondents receiving help from care and support services, results are published at a Wales level only. 

Summarises findings from the 2014-15 National Survey for Wales and responses to questions designed to measure the personal well-being of people who need care and support and carers who need support. Respondents were shown a list of services offered by care and support services in Wales and were asked whether they had received any help from these services in the last 12 months. 9 per cent of all respondents had received care and support for themselves) or had received help to care for or arrange care for another person.

Original document (pdf) on Welsh Government website.

Social care: third report of session 2009-10: volume 2: oral and written evidence

The social care system is widely seen as failing and it has long been clear that fundamental and lasting reform is necessary.  Reform is made all the more urgent as an ageing population will mean rising demand for care and support. Projected changes in demographics, availability of support from carers, unit costs of care and other factors indicate that social care in its current form will struggle to meet people's needs. Longer life need not mean more time spent in ill health. Improving public health and developing interventions for long-term conditions could pay major dividends. The old-age "support ratio" (the relative numbers of working-age and older people) is not the most important factor in the likely future affordability of social care. Our society must not underestimate its ability to become more productive and wealthier, nor the contribution that older people will make to that. In this report the Health Committee looks at: the present social care system; meeting future demand and costs; shortcomings of the present social care system;  Plans for reform; Achieving lasting reform; and  The way forward.

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Predictors of entering 24-h care for people with Alzheimer's disease: results from the LASER-AD study

OBJECTIVES: Many studies have investigated predictors of people with dementia entering 24-h care but this is the first to consider a comprehensive range of carer and care recipient (CR) characteristics derived from a systematic review, in a longitudinal cohort study followed up for several years.

METHODS: We interviewed 224 people with Alzheimer's disease (AD) and their carers, recruited to be representative in terms of their severity, sex and living situation as part of the LASER-AD study; and determined whether they entered 24-h care in the subsequent 4.5 years. We tested a comprehensive range of characteristics derived from a systematic review, and used Cox proportional hazard regression to determine whether they independently predicted entering 24-h care.

RESULTS: The main independent predictors of shorter time to enter 24-h care were the patient being: more cognitively or functionally impaired (hazard ratio (HR) = 1.09; 95% CI = 1.06-1.12) and (HR = 1.04 95% CI = 1.03-1.05), having a paid versus a family carer (HR = 2.22; 95% CI = 1.39-3.57), the carer being less educated (HR = 1.43; 95% CI = 1.12-1.83) and spending less hours caring (HR = 1.01; 95% CI = 1.00-1.01).

CONCLUSION: As having a family carer who spent more time caring (taking into account illness severity) delayed entry to 24-h care, future research should investigate how to enable carers to provide this. Other interventions to improve patients' impairment may not only have benefits for patients' health but also allow them to remain longer at home. This financial benefit could more than offset the treatment cost. Copyright 2009 John Wiley & Sons, Ltd.

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Working but not employed: Mothers of adults with intellectual disability as hidden workers

Background Earlier research shows that nonemployed mothers of children with intellectual disability (ID) have lower wellbeing than employed mothers. This study explored why and to what extent these mothers did not participate in the labour market.

Method An in-depth interview was employed, and 18 working-age and nonemployed mothers in Taiwan who had an adult child with ID were interviewed in their homes between July 2009 and May 2010.

Results The mothers left the labour market at different stages of the family life cycle due to a lack of formal/informal support for the care needs of their young children, and the continuing intensive care needs of their child with ID. Mothers were officially nonemployed; however, to meet their family's financial needs, they were hidden workers in practice.

Conclusions Policies are required that support these hidden female workers, who are also lifelong carers, by offering financial support and affordable social services.

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Who's there and who cares: age as an indicator of social support networks for caregivers among people living with motor neurone disease

This paper explores the social support networks available to the informal carers of people living with motor neurone disease (MND). An ethnographic case study was undertaken using ecomapping, observation and conversational interviews to collect data from 18 primary carers of people living with MND. Interviews took place in participants’ homes in metropolitan, regional and rural locations. Participants discussed the content of their support network and drew lines between individuals to indicate the type and strength of relationship. Changes to the network were depicted on ecomaps during subsequent interviews. While health policy-makers assume that healthy social capital exists in Australian communities and that social cohesion will ensure active and available support networks in times of illness or disability, data from this exploratory study indicated that this was not consistently the case. Support networks varied in size and composition; however, age was identified as a discriminator of the availability and consistency of support. People in older age groups identified more diverse but consistent support systems while people in younger age groups reported more fluctuations in the strength of relationships and declines in support as caregiving became more demanding. Individual assessment of support networks at regular intervals in the caregiving trajectory is vital for all carers. However carers in younger age groups may need specific support to manage the psychological crises that occur and more access to paid care. Older carers may need consistent support to handle more of the instrumental aspects of care and assistance to mobilise their support networks. Community workers should be alert to the possible need for crisis intervention when tensions in relationships threaten carers’ ability to provide effective care.

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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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Prepared to care? Exploring the impact of caring on people's lives

The Carers Week partnership wanted to find out from the UK’s carers how prepared as a society we are and what could make a difference to carers’ lives and the people they care for. Prepared to Care? explored the impact that caring has on people’s lives. In particular it focused on carers’ relationships, career, finances and health and well-being. The following are the findings of the survey of over 2,100 carers and their experiences. It concludes with recommendations from carers. 

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Worries and problems of young carers: issues for mental health

This paper reports on a research study which explored the worries and problems of young carers in Edinburgh. Sixty-one young carers took part in the study, conducted between April and June 2002. Findings indicate that young carers identify significant worries and problems in relation to their well-being, and that these come over and above any 'normal' adolescent difficulties. It is suggested that these findings may have important implications for young carers' mental health, now and in the future, and contain important lessons for child and family social work in general.

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Evaluation of a problem-solving (PS) techniques-based intervention for informal carers of patients with dementia receiving in-home care

The value of care provided by informal carers in Canada is estimated at $26 billion annually (Hollander et al., 2009). However, carers’ needs are often overlooked, limiting their capacity to provide care. Problem-solving therapy (PST), a structured approach to problem solving (PS) and a core principle of the Reitman Centre CARERS Program, has been shown to alleviate emotional distress and improve carers’ competence (Chiu et al., 2013). This study evaluated the effectiveness of problem-solving techniques-based intervention based on adapted PST methods, in enhancing carers’ physical and emotional capacity to care for relatives with dementia living in the community.

56 carers were equally allocated to a problem-solving techniques-based intervention group or a control arm. Carers in the intervention group received three 1 hr visits by a care coordinator (CC) who had been given advanced training in PS techniques-based intervention. Coping, mastery, competence, burden, and perceived stress of the carers were evaluated at baseline and post-intervention using standardized assessment tools. An intention-to-treat analysis utilizing repeated measures ANOVA was performed on the data.

Post-intervention measures completion rate was 82% and 92% for the intervention and control groups, respectively. Carers in the intervention group showed significantly improved task-oriented coping, mastery, and competence and significantly reduced emotion-oriented coping, burden and stress (p < 0.01–0.001). Control carers showed no change.

PS techniques, when learned and delivered by CCs as a tool to coach carers in their day-to-day caregiving, improves carers’ caregiving competence, coping, burden, and perceived stress. This may reduce dependence on primary, psychiatric, and institutional care. Results provide evidence that establishing effective partnerships between inter-professional clinicians in academic clinical health science centers, and community agencies can extend the reach of the expertise of specialized health care institutions.

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Case-finding of dementia in general practice and effects of subsequent collaborative care; design of a cluster RCT

Background: In the primary care setting, dementia is often diagnosed relatively late in the disease process. Case finding and proactive collaborative care may have beneficial effects on both patient and informal caregiver by clarifying the cause of cognitive decline and changed behaviour and by enabling support, care planning and access to services. We aim to improve the recognition and diagnosis of individuals with dementia in general practice. In addition to this diagnostic aim, the effects of case finding and subsequent care on the mental health of individuals with dementia and the mental health of their informal carers are explored.

Methods and design: Design: cluster randomised controlled trial with process evaluation.

Participants: 162 individuals ≥ 65 years, in 15 primary care practices, in whom GPs suspect cognitive impairment, but without a dementia diagnosis.

Intervention; case finding and collaborative care: 2 trained practice nurses (PNs) invite all patients with suspected cognitive impairment for a brief functional and cognitive screening. If the cognitive tests are supportive of cognitive impairment, individuals are referred to their GP for further evaluation. If dementia is diagnosed, a comprehensive geriatric assessment takes place to identify other relevant geriatric problems that need to be addressed. Furthermore, the team of GP and PN provide information and support.

Control: GPs provide care and diagnosis as usual.

Main study parameters: after 12 months both groups are compared on: 1) incident dementia (and MCI) diagnoses and 2) patient and caregiver quality of life (QoL-AD; EQ5D) and mental health (MH5; GHQ 12) and caregiver competence to care (SSCQ). The process evaluation concerns facilitating and impeding factors to the implementation of this intervention. These factors are assessed on the care provider level, the care recipient level and on the organisational level.

Discussion: This study will provide insight into the diagnostic yield and the clinical effects of case finding and collaborative care for individuals with suspected cognitive impairment, compared to usual care. A process evaluation will give insight into the feasibility of this intervention. The first results are expected in the course of 2013.

Trial registration: NTR3389

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Association between cultural factors and the caregiving burden for Chinese spousal caregivers of frail elderly in Hong Kong

Objectives: The aim of this study was to explore the relationship between cultural factors and the caregiving burden of Chinese spousal caregivers who provided care to their frail partners.

Method: A sample consisting of 102 Chinese caregivers for frail elderly spouses was recruited from home care services across various districts in Hong Kong. Structured interviews were conducted with the participants in their homes, measuring demographics, the functional status of the spouse, the degree of assistance required in daily care, perceived health, the caregiver's orientation to traditional Chinese family values, social support, coping, and caregiver burden.

Results: Findings of regression analysis indicated that gender, activities of daily living (ADL) status, orientation to traditional Chinese family values, passive coping, and marital satisfaction associated with caregiver burden. Being female, having lower functioning in ADL or a strong orientation toward traditional Chinese family values, employing the strategies of passive coping more frequent, or experiencing a low degree of marital satisfaction were associated with high levels of caregiver burden.

Conclusion: These findings provided a basis for developing appropriate interventions to minimize the caregiver burden of spousal family caregivers.

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Well-being among employed and non-employed caregiving women in Taiwan

This study addressed various groups of non-employed/employed and non-caring/caring women in Taiwan. Data from the 2006 National Taiwanese Women Survey (at age 16–64, n= 6,017) were analysed to determine whether there are differences in terms of well-being, as measured by self-rated health and family life satisfaction, between women who work and/or care and between different carer groups. Other factors associated with well-being of carers of young children (n= 1,697) were also analysed. The results showed that non-employed carers of disabled adults stood out as the most disadvantaged group. However, the importance of work has been replaced by support among carers of young children. This study suggests that unpaid carers, particularly carers of disabled adults who are non-employed, ought to be supported by policies. To improve carers' well-being, care–work reconciliation among working-age women needs to be included in the future care scheme in Taiwan.

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User profiling for coordinated and integrated care

Integrated care has been increasingly advocated as an approach to promote better coordination of services and quality of care at different levels. In this study, views were elicited from different users of the healthcare system (patients, informal carers and healthcare professionals) in four European countries. The views pertained to current states of care and the role that remote patient monitoring and telehealth in general can play to facilitate effective implementation of integrated care. Overall, services were perceived to be fragmented at different levels ranging from personal to system fragmentation. Approaches such as telehealth, remote patient monitoring and having specialised urgent clinics in primary care were positively perceived by users as possible solutions for tackling fragmented care and for promoting better integration of services.

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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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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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Half a million voices: improving support for BAME carers

There are 500,000 Black Asian Minority Ethnic (BAME) carers in England. This report shows that BAME carers provide more care than average. They face additional difficulties as they care, struggling with language barriers, accessing culturally appropriate services and with stereotyping around caring. This puts them at greater risk of ill health, poverty, loss of employment and social exclusion. The report analyses existing provisions and sets clear recommendations for local authorities, health and well being boards, primary care trusts and GP consortia to improve services.

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Carers' quality of life and experiences of adult social care support in England

Informal carers make a vital contribution to the well-being of the people they care for or look after. Against the policy background in England, the purpose of this study was to explore the views of carers who are in contact with adult social care support services. A qualitative study with 31 carers, who were recruited via local authorities and carers' organisations, was conducted between April and July 2012 to collect data on carers' experiences and perceptions of their quality of life (QoL) with and without adult social care and support for themselves or the person they look after. Through framework analysis, three key themes were identified: (i) definitions of social care services ‘for’ the carer or ‘for’ care recipient and social care outcomes; (ii) carers' access to social care services; and (iii) the meaning and value of informal care. We find that carers' QoL is affected by social care support directed at carers and support directed at those they care for, as well as access to services, the experience of stigma in communities, and in how individual needs and preferences are considered when making decisions about care. While there is much to welcome in the direction of policy in England, this study has shown that there are some gaps in thinking around these areas that will need to be addressed if the lives of carers are to be improved.

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Participation: (re)interpretation of a core value in the Czech social care of the frail elderly

A variety of non-fiscal input could be brought into discussion regarding the redesign and/or reform of the social care system for the frail elderly in the Czech Republic. It should be based on a deeper understanding of different stakeholders' interpretations of "Participation" one of the core values of the European social model. The study was based on secondary data collected through semi-structured interviews with "informal carers" (family members, non-professionals), secondary data collected through international focus-groups; participants were recruited from master-degree students of "social and health care management" using qualitative content analysis and data collected through document content analysis. With an aging European population, the intergenerational participation appears disputable (not axiomatic) with two generations of frail seniors in one family. Redesigned and/or new kinds of "prevention" services should be in place, possibly refocusing its effort to different target groups to support the perspective of “qualified customer behaviour”. It offers possible direction of further research.

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Meditation-based interventions for family caregivers of people with dementia: a review of the empirical literature

Objectives: Providing care for a family member with dementia is associated with increased risk of adverse mental health sequelae. Recently, interventions utilising meditation-based techniques have been developed with the aim of reducing psychological distress among dementia caregivers. The present review aimed to critically evaluate the extant empirical literature in order to determine: (1) whether meditation-based interventions can reduce depression among dementia caregivers and (2) whether meditation-based interventions can reduce subjective burden among dementia caregivers.

Method: After adhering to inclusion and exclusion criteria, a total of eight studies were included in the present review. Methodological quality was assessed using one of two scales dependent on study design.

Results: The results provide tentative evidence that meditation-based interventions do indeed improve levels of depression and burden in family dementia caregivers.

Conclusions: The review highlighted the strengths and weakness of the studies’ methodological designs. Whilst this novel review offers evidence in support of meditation-based interventions to improve the psychological distress of family dementia caregivers, future research should direct efforts to conduct larger scale, more rigorous studies. Clinical implications of the findings are also discussed.

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Prioritising need in the context of Putting people first: a whole system approach to eligibility for social care: guidance on eligibility criteria for adult social care, England 2010

The aim of this revised guidance is to assist councils with adult social services responsibilities to determine eligibility for adult social care, in a way that is fair, transparent and consistent, accounting for the needs of their local community as a whole as well as individuals’ need for support. It replaces Fair Access to Care Services: guidance on eligibility criteria for adult social care which was issued in 2003, and has been written in the light of recommendations made in the Commission for Social Care Inspection’s review Cutting the Cake Fairly. This revised guidance aims to set social care eligibility criteria within the context of both the new direction of policy established by Putting People First, and more generally within a broader theme of public service reform. Priorities for this reform include greater choice and control, better access to public services and information, empowerment of people using services and their carers at local level and the definition of user satisfaction as a key measure of success.

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Home support workers perceptions of family members of their older clients : a qualitative study

Background: Health care discourse is replete with references to building partnerships between formal and informal care systems of support, particularly in community and home based health care. Little work has been done to examine the relationship between home health care workers and family caregivers of older clients. The purpose of this study is to examine home support workers’ (HSWs) perceptions of their interactions with their clients’ family members. The goal of this research is to improve client care and better connect formal and informal care systems.

Methods: A qualitative study, using in-depth interviews was conducted with 118 home support workers in British Columbia, Canada. Framework analysis was used and a number of strategies were employed to ensure rigor including: memo writing and analysis meetings. Interviews were transcribed verbatim and sent to a professional transcription agency. Nvivo 10 software was used to manage the data.

Results: Interactions between HSWs and family members are characterized in terms both of complementary labour (family members providing informational and instrumental support to HSWs), and disrupted labour (family members creating emotion work and additional instrumental work for HSWs). Two factors, the care plan and empathic awareness, further impact the relationship between HSWs and family caregivers.

Conclusions: HSWs and family members work to support one another instrumentally and emotionally through interdependent interactions and empathic awareness. Organizational Care Plans that are too rigid or limited in their scope are key factors constraining interactions.

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Short report. Palliative care in heart failure - a neglected area in specialist training?

Heart failure has a comparable prognosis to many cancers and accounts for approximately 4% of deaths in the UK. Despite its poor prognosis, few patients have access to specialist palliative care services. The National Institute for Health and Clinical Excellence (NICE) acknowledges that the palliative care needs of patients with heart failure and their informal carers are not currently being met. Its recently published guidance recommends the development of an effective multidisciplinary service model for such patients.

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Services to support carers of people with mental health problems : consultation report for the National Co-ordinating Centre for NHS Service Delivery and Organisation R & D (NCCSDO)

The aim of this report is to provide a scoping review of evaluation studies of interventions and serv ices to support carers of people with m ental health problem s, to discuss issues relating to the effectiveness and cost - effectiveness of interventions, and to provide insights into areas where there are gaps in knowledge. The report is accom panied by a second report, the Consultation Report, that docum ents a consultation exercise held with key stakeholders, including ‘key informant’ carers. A third report, the Overview Report, draws together the em erging them es and issues, and advises on what further researc h and development work should be funded in this area. 

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An exploration of help-seeking behaviour in older people with unmet needs

Background. Despite decades of research showing high rates of unmet need in older people, there currently is little understanding of why these needs remain unmet. This study was performed as part of a larger feasibility study of a multidisciplinary needs assessment tool in primary care.

Objective. The aim of the present study was to explore patients' and carers' help-seeking behaviour and perceived barriers to meeting unmet needs.

Method. Four general practices were selected purposively in inner city and suburban London. A random sample of 1 in 20 people aged 75 years and over registered with each practice was selected for a multidisciplinary needs assessment using the ‘Camberwell Assessment of Need for the Elderly’ (CANE) schedule and unmet needs identified by patients and their informal carers. For each unmet need, a further semi-structured interview was used to explore the help-seeking behaviour and perceived barriers to meeting their needs. Responses were recorded verbatim contemporaneously and a thematic analysis performed on perceived barriers following completion of all interviews.

Results. A total of 55/84 (65.5%) of patients and 15/17 (88%) of carers completed the initial needs assessment. For 104 unmet needs identified by 31 patients and 11 carers, a further interview was completed on the barriers to meeting that need. Help had been sought for only 25/104 (24%) of unmet needs and it had been offered in only 19/104 (18%). In those not seeking help, withdrawal, resignation and low expectations were dominant themes. In those that had sought help, there were issues of perceived failure of service delivery and rationing, with themes of resignation and withdrawal again emerging in those declining help offered.

Conclusion. The majority of older people and their carers do not appear to seek help for their unmet needs for a range of complex reasons, often involving issues of withdrawal, resignation and low expectations. This complexity has implications for the commissioning of services for older people.

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Care Act 2014: chapter 23

The Care Act aims to make the care and support system clearer and fairer for those who need it. It includes provision for a national minimum eligibility threshold, gives carers a legal right to assessment, and reforms the way that care is paid for. The Act also makes provision about care standards, establishes and make provision about Health Education England, to establish and makes provision about the Health Research Authority. The Act was passed on 14 May 2014 and comes into force in April 2015.

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Caring for adults with intellectual disabilities: perceived challenges for nurses in accident and emergency units

AIM: This paper reports a study exploring the experiences of nurses in accident and emergency units caring for people with intellectual disabilities.

BACKGROUND: People with intellectual disabilities are increasingly in contact with healthcare professionals in accident and emergency units. Often this contact occurs within the accident and emergency service, an area in which staff care for a diverse range of people. The experiences of people with intellectual disabilities within acute general hospitals in the United Kingdom and internationally has largely been reported as quite negative. Conversely, little is known about the experiences of nurses working in acute general hospitals, nor the exact nature of any challenges they encounter, in providing care to people with intellectual disabilities. This lack of understanding weakens opportunities for nurses to reduce barriers to providing an equitable service for people with intellectual disabilities.

METHOD: Five focus groups were conducted with 27 accident and emergency nurses from five hospitals in Northern Ireland in the spring of 2004. The data were then coded and recurring themes identified.

FINDINGS: This paper focuses on two themes: lack of knowledge of the nature of intellectual disability and dependence on carers. Whilst these themes have been acknowledged in the existing literature, they have received limited attention and exploration. The experience of fear and vulnerability was considered by participants to be a consequence of their lack of knowledge. The experience of these emotions is viewed as a key factor in nurses' over-dependence on patients' informal carers.

CONCLUSION: Increased awareness is needed among professionals in accident and emergency units of the abilities and needs of people with intellectual disabilities.

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Experiences with using information and communication technology to build a multi-municipal support network for informal carers

This multi-municipal intervention study explored whether informal carers of frail older people and disabled children living at home made use of information and communication technology (ICT) to gain knowledge about caring and to form informal support networks, thereby improving their health. Seventy-nine informal carers accessed web-based information about caring and an e-based discussion forum via their personal computers. They were able to maintain contact with each other using a web camera and via normal group meetings. After the first 12 months, 17 informal carers participated in focus group interviews and completed a short questionnaire. Four staff members were also interviewed. Participant carers who had prior experiences with a similar ICT-based support network reported greater satisfaction and more extensive use of the network than did participants with no such prior experience. It seems that infrequent usage of the service may be explained by too few other carers to identify with and inappropriate recruitment procedures. Nevertheless, carers of disabled children reported that the intervention had resulted in improved services across the participant municipalities. To achieve optimal effects of an ICT-based support network due attention must be given to recruitment processes and social environment building for which care practitioners require training and support.

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How involuntary commitment impacts on the burden of care of the family

Little research has examined how, or if, involuntary commitment has impacted on the burden experienced by the family. This paper reports a qualitative study which explored how involuntary commitment under the Mental Health Act (MHA) 2000 in Queensland, Australia impacted on families of people with mental illness. Family members of a person with a mental illness, under involuntary commitment at the time or in the previous 12 months, participated in focus groups. Thematic analysis was used to determine the themes. It was apparent from the views of the family that the use of the involuntary commitment was influenced greatly by the pressures experienced by the mental health services (MHS). The MHA did little to assist the family in gaining access to MHS. It was not until after the family made repeated attempts that they were taken seriously. Often the family had few options other than to use deceit and threats to obtain the necessary treatment required. In view of this, the inherit nature of what involuntary commitment implies for persons under it, such as refusing treatment and management difficulties, indicates the family with such an individual experience more hardship in trying to obtain assistance for that person. Thus, the MHA in Queensland has not met its goals of increasing access to MHS. Family members perceive that they were not being listened to and their concerns were not acted upon. The current culture of the MHS appears to serve, to a large degree, to estrange the family from the consumer making relationships difficult and time-consuming to repair. The mental health profession is urged to consider the culture within their workplace and move towards constructive involvement of the family.

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Do they care too much to work? The influence of caregiving intensity on the labour force participation of unpaid caregivers in Canada

The recent growth of the home care sector combined with societal and demographic changes have given rise to concerns about the adequacy of the supply of family and friend caregivers Potential caregivers face competing time pressures that pull them in the direction of the labour market on one hand and towards unpaid caregiving duties on the other This paper examines the influence of unpaid caregiving on the labour supply of a cohort of working-aged caregivers in Canada with particular emphasis on caregiving intensity Results suggest that caregivers are heterogeneous in both their caregiving inputs and associated labour market responses thereby underscoring the importance of controlling for caregiving intensity when measuring labour supply The negative Influence of primary caregiving on labour supply appears to be at the level of labour force participation rather than on hours of work or wages (C) 2010 Elsevier B V All rights reserved

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Good practice carers and young carers stories: caring together and getting it right for young carers: the carers and young carers strategy for Scotland 2010-2015

This compendium of good practice and carers and young carers stories accompanies Caring Together and Getting it Right for Young Carers. Earlier in the year the Scottish Government invited local authorities, Health Boards, the Third Sector and other organisations in Scotland to submit examples of good practice about support for carers and young carers. They also invited personal ‘stories’ from carers and young carers. Many examples and stories were received and these form the subject of this compendium produced by the Scottish Government and the Convention of Scottish Local Authorities (COSLA). The compendium contains 45 examples of good practice and 24 carers’ and young carers’ stories. Available online only.

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National user and carer outcomes and local improvement targets for the joint future agenda

The Health and Community Care Ministerial Steering Group (MSG) of Scotland is leading the drive to “re-invigorate the Joint Future Agenda”, in order to improve outcomes for individuals and their carers. As part of this drive, it has decided that local partnerships should be asked to agree local improvement targets which could demonstrate improved outcomes, as a result of better joint working. It is likely that these local improvement targets will build on existing local performance frameworks which partnerships are already developing, eg. on delayed discharges, quicker assessments, and easier access to services. The MSG proposes that local improvement targets would be reported to the Joint Future Implementation and Advisory Group. It would have the responsibility for scrutinising them and then taking appropriate action, for example, to support local partnerships.

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Committed to carers: supporting carers of people at the end of life

Marie Curie campaigns to ensure that more people are able to be cared for and die at home. Previous research has shown that 63% of people would choose to die at home if they were terminally ill, however the reality in the UK is that just 21% of people die at home, while the majority (53%) die in hospital. This report describes the direct experiences of carers looking after someone at the end of life. It is based on interviews with 40 carers who were currently caring for a sick friend or relative or had been bereaved. The research was designed to explore how people experience caring for someone with a terminal illness in the context of their family, work and social lives. Some of the patients used hospice or hospital in-patient care, others remained at home. The separate chapters consider: the impact of caring for someone at the end of life; access to information and support; the place of care and place of death; and bereavement. It concludes with recommendations designed to ensure that more carers of someone at the end of life receive the support they need to keep caring.

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Searching for LGBT carers: mapping a research agenda in social work and social care

Tentative efforts have been made in UK government policy and through pockets of social work and social care research to recognise how sexuality and gender identity shape the experiences of lesbian, gay, bisexual and transgender (LGBT) individuals providing care to others. In this article, we map the literature base of existing research in the field of LGBT care provision and outline themes of LGBT caring developed from a recent eight-month scoping exercise. Themes were generated from a scoping exercise conducted in England and Wales in which we gathered stakeholders' perspectives, including carers and carer organisations, about future research and problems for LGBT carers through focus groups and semi-structured interviews. We discuss three thematic areas developed from qualitative data: (i) the absent presence of LGBT carers in data collection and monitoring; (ii) the heterosexist responses and heteronormative assumptions encountered by LGBT carers from health and social care professionals, and (iii) efforts to disentangle the needs of transgender people providing care from LGB carers' experiences. To conclude, we identify lessons learnt for future social work research and directions for developing a wider research agenda.

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User acceptance of a multi-media software application to increase preparedness for caring problems

This paper presents verification data for a multimedia software application intended to enhance carers' ability to respond to everyday difficulties and emergency situations. The program provides educational information about first aid, how to deal with everyday problems and a number of emergency situations such as bleeding, falling and choking. An evaluation plan was developed, including instruments for measuring and assessing usability. These included a questionnaire, scenarios and a pro-forma for user trials; a questionnaire for evaluation of the program; log diaries, field notes and technical diaries. User trials were carried out with both healthcare professionals and family carers. Casual users were encouraged to test the programs at the professional sites. Users' views on usability were utilized for the development of further prototype of the software application. 

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Are caregiving responsibilities associated with non-attendance at breast screening?

Background: Previous research showed that deprived individuals are less likely to attend breast screening and those providing intense amounts of informal care tend to be more deprived than non-caregivers. The aim of this study was to examine the relationship between informal caregiving and uptake of breast screening and to determine if socio-economic gradients in screening attendance were explained by caregiving responsibilities.

Methods: A database of breast screening histories was linked to the Northern Ireland Longitudinal Study, which links information from census, vital events and health registration datasets. The cohort included women aged 47 - 64 at the time of the census eligible for breast screening in a three-year follow-up period. Cohort attributes were recorded at the Census. Multivariate logistic regression was used to examine the relationship between informal caregiving and uptake of screening using STATA version 10.

Results: 37,211 women were invited for breast screening of whom 27,909 (75%) attended; 23.9% of the cohort were caregivers. Caregivers providing <20 hours of care/week were more affluent, while those providing >50 hours/week were more deprived than non-caregivers. Deprived women were significantly less likely to attend breast screening; however, this was not explained by caregiving responsibilities as caregivers were as likely as non-caregivers to attend (Odds Ratio 0.97; 95% confidence intervals 0.88, 1.06).

Conclusions: While those providing the most significant amounts of care tended to be more deprived, caregiving responsibilities themselves did not explain the known socio-economic gradients in breast screening attendance. More work is required to identify why more deprived women are less likely to attend breast screening.

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Gender differences in intergenerational care in European welfare states

Elderly people with functional limitations are predominantly cared for by family members. Women – spouses and daughters – provide most of this care work. In principle, gender inequality in intergenerational care may have three causes: first, daughters and sons have different resources to provide care; second, daughters and sons respond differently to the same resources; third, welfare state programmes and cultural norms affect daughters and sons differently. In this paper, we address the empirical question whether these three assumed causes are in fact responsible for gender differences in intergenerational care. The empirical analyses, based on the Survey of Health, Ageing and Retirement in Europe (SHARE), reveal that parents in need are in fact more likely to receive care from daughters than from sons. Daughters are more responsive to the needs of their parents than sons and respond differently to the same resources. Gender inequality is highest in countries with a high level of intergenerational care, high public spending on old-age cash-benefits, a low provision of professional care services, high family obligation norms and a high level of gendered division of labour. Welfare state programmes reduce or increase gender inequality in intergenerational care by reducing or increasing the engagement of daughters in intergenerational care. In general, care-giving by sons is hardly influenced by social care policies.

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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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Housing and support options for people with learning disabilities: draft

The guide is to help Partnership Boards write plans on ‘housing and support’. Partnership Boards have to write these plans by winter 2002/3. This guide has ideas to help them do this well. The ‘housing and support plans’ will give people with learning disabilities more choice about: where they live.who they live with.and who gives them support. Some of the different types of housing and support the guide talks about are: supported living, living in small ordinary houses, village communities,and living with family and relatives.

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Disclosing a diagnosis of dementia: a systematic review

BACKGROUND: The issue of diagnostic disclosure in dementia has been debated extensively in professional journals, but empirical data concerning disclosure in dementia has not previously been systematically reviewed.

OBJECTIVE: To review empirical data regarding diagnostic disclosure in dementia.

METHODS: Five electronic databases were searched up to September 2003 (Medline, Embase, Cinahl, Sociological Abstracts, Web of Science). Additional references were identified through hand searches of selected journals and bibliographies of relevant articles and books. The title and abstract of each identified paper were reviewed independently by two reviewers against pre-determined inclusion criteria: original data about disclosure were presented and the paper was in English. Any disagreements were resolved by discussion until consensus was reached. Data were extracted independently by two reviewers using a structured abstraction form. Data quality were not formally assessed although each study was critically reviewed in terms of methodology, sampling criteria, response rates and appropriateness of analysis.

RESULTS: Fifty-nine papers met the inclusion criteria for detailed review. Many of the studies had methodological shortcomings. The studies reported wide variability in all areas of beliefs and attitudes to diagnostic disclosure and reported practice. Studies of the impact of disclosure indicate both negative and positive consequences of diagnostic disclosure for people with dementia and their carers.

CONCLUSIONS: Existing evidence regarding diagnostic disclosure in dementia is both inconsistent and limited with the perspectives of people with dementia being largely neglected. This state of knowledge seems at variance with current guidance about disclosure. Copyright 2004 John Wiley & Sons, Ltd.

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Staying put: keeping the family home for adults with a learning disability

Valuing People reminds us that 60 percent of adults with learning disabilities are still living at home being supported by relatives. The author investigates how older carers could best use the family home in planning for the future and reviews the different arrangements families can put in place to ensure a son of daughter can continue to live at home.

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Caring for the carers : the characteristics of district nursing support for family carers

This paper presents findings from an ethnographic study that examined how qualified district nurses’ conceptualized their role in relation to family carers and how they performed this aspect of their role.

A participant observational study involving fieldwork and in-depth interviews with six district nursing teams was undertaken over a 12-month period. Interview transcripts and fieldnotes were analysed by drawing upon the principles of dimensional analysis.

District nurses acted on the assumption that family carers would, by choice or default, provide care. Family carer support was conceptualized as a means of promoting self-care and the patient’s independence from nursing services. The rationale for providing family carer support was based largely on service capacity rather than on carer needs and preferences. Six characteristics of district nursing support for carers were identified: enabling, supporting, mediating, care substitution, crisis prevention and crisis intervention. Family carers were not recipients of district nursing support in their own right but were dependent upon the cared-for person receiving nursing care. This in turn was conditional upon others (general practitioners and hospitals) making appropriate patient referrals. Family carer support was also conditional upon effective communication and family carer receptiveness.

As the scope of home-based nursing continues to increase, district nurses need to take a more active stance in providing family carer support and adopt a family rather than patient-focused approach in order that family carers might be supported more effectively.

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Considerations in developing and delivering a non-pharmacological intervention for symptom management in lung cancer: the views of health care professionals

Background: A respiratory distress symptom cluster has recently been identified in lung cancer associated with breathlessness, cough and fatigue, and the study reported here is part of a wider body of work being undertaken to develop a novel non-pharmacological intervention (NPI) for the management of this symptom cluster. The current paper reports the views of health care professionals (HCPs) involved with cancer care regarding the most appropriate ways of developing and delivering such a novel intervention.

Methods: Five focus groups, supplemented with additional telephone interviews, were conducted with a range of both community- and acute-based HCPs involved in symptom management for lung cancer patients. Participants included oncologists, palliative care consultants, specialist nurses, occupational therapists and physiotherapists. The focus groups were transcribed verbatim and analysed using NVIVO to support a framework analysis approach.

Results: The current delivery of NPIs was found to be ad hoc and varied between sites both in terms of what was delivered and by which health care professionals. The provision of NPIs within acute medical settings faced common problems concerning staffing time and space, and there was a recognition that the preference of most patients to make as few hospital visits as possible also complicated NPI teaching. Moreover, there may only be a small window of opportunity in which to effectively teach lung cancer patients a novel NPI as the period between diagnosis and the onset of severe symptoms is often short.

Discussion: The participants agreed that the novel symptom management NPI should be individually personalised to the needs of each patient and be available for patients when they become receptive to it. Moreover, they agreed that the intervention would be most effective if delivered to patients individually rather than in groups, outside acute medical settings where possible and closer to patient’s homes, should be delivered by an HCP rather than a trained volunteer or lay person and should involve informal carers wherever practicable.

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We're all in it together: supporting young carers and their families in Australia

Although recent initiatives in Australia have attempted to respond to the needs of children and young people with care responsibilities, many continue to be unable to access responsive supports. A qualitative, exploratory study was conducted to identify the current needs and barriers to services for young carers and their families in Canberra, Australia. This paper focuses on a range of family, service and systems level issues that impede young carers' access to services. The findings are based on semistructured, face-to-face interviews conducted with 50 children and young people with care responsibilities. Purposive and snowballing sampling were used to recruit the sample. Peer researchers were involved in the development of the research parameters and conducted and analysed interviews. Young carers in this sample reported high levels of need but low levels of support provided formally and informally by their extended families and the service sector. Major barriers to support included reluctance within families to seek assistance for fear of child removal, negative intervention and increased scrutiny; the families' lack of awareness of available services; a lack of flexibility and responsiveness to the holistic needs of families; and a lack of service collaboration. The importance of recognising the specific needs of each member within the family unit was particularly highlighted as was the need for responsive and co-ordinated service supports.

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A practical guide for disabled people or carers: where to find information, services and equipment

Guide giving information about services for disabled people available from government departments and agencies, the NHS, local government, and voluntary organisations. Covers every need, including housing, money, opportunities for holidays and leisure, and many more. Includes phone numbers, publications and a list of organisations.

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The effect of caregiving on women in families with Duchenne/Becker muscular dystrophy

Duchenne/Becker muscular dystrophy (DBMD) is a disorder of progressive muscle weakness that causes an increasing need for assistance with activities of daily living. Our objective was to assess the psychosocial health and contributing factors among female caregivers in families with DBMD. We conducted a survey of adult women among families with DBMD in the United States (US) from June 2006 through January 2007, collecting data related to the care recipient, perception of caregiving demands, personal factors, and socio-ecologic factors. Life satisfaction, stress, and distress were assessed as outcomes. Existing validated instruments were used when available. We received responses from 1238 women who were caring for someone with DBMD, 24.2% of whom were caring for two or more people with DBMD. Caregivers were more likely to be married/cohabitating than women in the general US population, and a high level of resiliency was reported by 89.3% of caregivers. However, the rate of serious psychological distress was significantly higher among caregivers than among the general population. Likewise, 46.4% reported a high level of stress, and only 61.7% reported that they were satisfied with their life. A high level of caregiving demands based on the Zarit Burden Interview (ZBI) was reported by 50.4% of caregivers. The post-ambulatory phase of DBMD was associated with decreased social support and increased ZBI scores. In multivariate logistic regression modelling, life satisfaction was dependent on high social support, high resiliency, high income, and form of DBMD. Distress and high stress were predicted by low resiliency, low social support, and low income. Employment outside of the home was also a predictor of high stress. Interventions focused on resiliency and social support are likely to improve the quality of life of DBMD caregivers, and perhaps caregivers of children with other disabilities or special health care needs as well.

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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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An investigation of family carers' needs following stroke survivors' discharge from acute hospital care in Australia

Purpose. To expand understanding of informal stroke care-giving, validated tools previously used in Hong Kong and in the UK were used with Australian stroke carers to assess their stroke-related knowledge, perceived needs, satisfaction with services received and sense of burden after stroke patients' discharge home from acute hospital care.

Methods. Record audit and telephone interviews with two cohorts of 32 carers recruited in Sydney and Brisbane 1 and 3 months post-hospital discharge, using validated scales and open questions in May–July 2006.

Results. Female carers, those with prior care-giving responsibility, and those interviewed at three compared to one month post-discharge reported greatest needs and burden from the care-giving role; needs alone significantly predicted burden. Getting information and being prepared for life after discharge were central concerns. Some felt this was accomplished, but inadequate information giving and communication mismatches were apparent.

Conclusions. Service providers need to develop partnership working with stroke families and provide a network of services and inputs that cut across conventional boundaries between health and social care, public, private and voluntary organisations, with care plans that deliver what they delineate. Stroke care-givers have common issues across countries and healthcare systems; collaborative research-based service development is advocated.

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Respite care as a community care service: factors associated with the effects on family carers of adults with intellectual disability in Taiwan

Background This study examines the effects and associated factors of respite care, which was legislated as a community service for adults with an intellectual disability (ID) in Taiwan in 1997.

Method A total of 116 family carers who live with an adult with ID and have utilised the respite care program were surveyed using standardised measures.

Results The results suggest that the most notable effects of respite care include improvement in the carers' social support and life satisfaction, and relief of psychological stress and overall burden of care. The factors associated with these effects include the way the participants have used the respite care and the users' individual characteristics.

Conclusions How families used the respite care, whether the carers practised a religion, and where the families resided, were the most significant factors in determining the effectiveness of the respite. Suggestions are made for making access to information about the program more widely available, and for extending the availability and duration of the service.

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Facilitating change and adaptation : The experiences of current and bereaved carers of patients with severe chronic obstructive pulmonary disease

Background: Patients with severe chronic obstructive pulmonary disease (COPD) experience substantial symptom burden, psychological and social morbidity. The experience of this illness has an impact beyond the patient.

Objective: This study seeks to understand the experiences and needs of family carers of people with severe COPD.

Design: Semistructured interviews were held with current and bereaved carers of people with severe COPD. Several areas of content were targeted in the interviews, including the experience of caring for someone with COPD, views of treatment and prognosis, information and communication needs, and the understanding of palliative care. Data were analyzed thematically.

Results: The carers' and bereaved carers' experiences and needs around COPD are best understood as a dynamic of change, recognition, and adaptation. Carers faced many changes as the patients' general condition deteriorated. These were changes in the nature of caring tasks, in their relationships, and their own expectations. Carers usually recognized change had happened and sought to adapt through new approaches, new equipment, a new stance of thinking, and in most cases, continued caring. Within this theme of change, recognition, and adaptation were a series of subthemes: (1) the impact of caring, (2) recognizing the role of the carer, and (3) the needs of the carer including their needs from palliative care services.

Conclusion: The impact of caring borne by family carers is substantial and life changing. Health professionals may assist carers in their role through acknowledgement, facilitating recognition of the changes that have occurred (and their implications), and enabling creative adaptive responses for carers. Such assistance is likely to enhance the ability of carers to continue in this demanding role.

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Formal and informal care for people with dementia: factors associated with service receipt

Details of service receipt by 132 people diagnosed with dementia and their carers were collected in South London (boroughs of Lewisham, Camberwell, Southwark and Croydon), a geographical area served by several health and social care providers. The data collected included the Caregiver Activity Survey, which details the informal care given. This paper reports the formal and informal services received by the people with dementia at entry to the study. The amount of time spent on specific caring tasks by all informal carers of people with dementia averaged seven hours per week, but was significantly higher for co-resident carers, even when controlling for the level of dependency of the person cared-for. The odds ratios of receipt of formal services are given, according to where people were living: in the community or residential care, with co-resident carers or alone.

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'Listen to what I'm saying': person centred care and the single assessment process

Person centred care means listening to people to find out what is most important to them and without making assumptions. Care is holistic, and centres on the whole person: who they are, their life before, and how they currently feel. The emphasis is on what the person can, rather than cannot do. This video shows health and social care professionals working directly with individuals and their carers. There are no actors, and no prepared scripts. The film shows what a difference a person centred approach makes to individuals with many/complex needs. It links the Single Assessment Process (SAP), as the person centred health and social care framework, with other Department of Health policies e.g. long term conditions with its emphasis on case management. It outlines key principles of person centred care that are evolving, including holistic assessment, personalised care plans, sharing information, continuity and coordination, and self care/self management. A feature of the film is to hear the views of the individuals and carers themselves in 3 Case Studies with a Social Worker, Community Matron and a Community Mental Health Nurse. 

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The £20 billion question: an inquiry into improving lives through cost-effective dementia services

The facts about the growing number of people with dementia in the UK and the associated costs are firmly established. It is well known that dementia is a significant and growing driver of demand for health and social care. The cost of dementia in the UK in 2010 was estimated to be £20 billion and this is expected to grow to over £27 billion by 2018. It is also clear that health and social care budgets are under extreme pressure and there is an urgent need to improve the cost-effectiveness of services. Given the high financial costs of dementia and the human cost of failing to provide good quality support, commissioners and planners will miss a vital opportunity if they do not treat dementia as a priority area for improving cost-effectiveness. The APPG believes there is ample opportunity for using resources more effectively while at the same time improving outcomes for people with dementia. The evidence in this report demonstrates that many areas have been able to not only achieve better outcomes for people with dementia but also to achieve greater value for money in dementia care, by making changes to service provision or adopting new ways of working. Many of the examples focus on earlier intervention to prevent crises or delay the need for more intensive types of support. Witnesses were also clear that integrated models of care are necessary. Professionals from across health and social care need to work closely and co-ordinate services to improve the efficiency and quality of dementia services. These findings should be incorporated within the current health and social care reforms, for example, by ensuring resources are focused on prevention and that commissioning is informed by a wide range of views. The APPG on Dementia considers that there is considerable potential to increase the cost-effectiveness of dementia services, while at the same time improving outcomes for people with dementia. We urge health and social care planners and providers to consider what they can do differently to achieve these ends. Given the considerable burden of dementia, improving the cost-effectiveness of dementia care could make a significant impact on the overall health and social care budget.

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Adults with Incapacity (Scotland) Act 2000: code of practice for continuing and welfare attorneys

The Adults with Incapacity (Scotland) Act 2000 was introduced to protect individuals with incapacity and to support their families and carers in managing and safeguarding the individuals’ welfare and finances. The Executive commissioned a two-year project to monitor how the Act was working. The results were positive, but showed that some changes could be made to streamline procedures and enable more adults and their carers to benefit from the Act. This revised edition of the code of practice for continuing and welfare attorneys takes account of changes to the Act that were introduced in part 2 of the Adult Support and Protection (Scotland) Act 2007. This code is for anyone appointed as an attorney under the Act, that is, as continuing and/or welfare power of attorney. The code applies equally to a lay person and to a professional continuing attorney such as a solicitor or accountant. It contains the following sections: about the act; creating a power of attorney; exercising powers of attorney (continuing and welfare); Specific guidance on exercising welfare powers of attorney;Stopping being an attorney; and Pre-act attorneys and attorneys under the law of another country.

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Caregiver roles in families affected by Huntington's disease: a qualitative interview study

Aim: The objective of this study was to explore family caregivers' experiences with the impact of Huntington's disease (HD) on the family structure and roles in the family.

Methodology: We interviewed 15 family caregivers in families affected by HD, based on a semi-structured interview guide. The participants were recruited through hospital departments and a lay organisation for HD in Norway. Data from the interviews were analysed with systematic text condensation.

Results: Huntington's disease could have a substantial impact on the family system, the shape of roles among family members and the hierarchical order between spouses, partners, and parents and children. The relationship between spouses and partners changed during the course of the disease. A reciprocal relationship was difficult to maintain, as the role as carer overshadowed other roles. Children of an affected parent could compensate for impairments by taking on adult responsibilities, and in some families, a child had the role as main caregiver. The increasing need for care could cause conflicts between the role as family member and family caregiver. The burden of care within the family could fragment and isolate the family.

Conclusions: Huntington's disease has a major impact on family systems. Caregiver roles are shaped by impairments in the affected family member and corresponding dynamic adoption and change in roles within the family. Making assessments of the family structure and roles, professionals may understand more about how to care for and support individuals in their role as family members and caregivers in different stages of the disease and family life cycle.

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Hidden caring, hidden carers? Exploring the experience of carers for people with long-term conditions

Informal carers make a significant contribution to illness management in communities, but many struggle to access support and remain ‘hidden carers’. We aimed to explore how carers of people with common long‐term conditions (LTCs, such as coronary heart disease or kidney disease) conceptualised their caring, and whether they struggled to identify themselves with the term ‘carer’ or access for support. We conducted semi‐structured interviews with 19 informal carers of people with LTCs recruited from local support groups. Topic guides were designed to encourage participants to provide their retrospective accounts of identifying as a carer or struggling to do so. Data were analysed using the constant comparative method. The study was designed collaboratively with a patient and public involvement (PPI) partner, and we consulted with a PPI steering group of people with lived experience of caring during the study. Results showed how participants drew on comparisons with those caring for more dependent relatives in explaining their reluctance to define themselves as a carer, and resisted adopting the label due to concerns that it would threaten the identity of the cared‐for person. The data were interpreted in terms of types of ‘work’ undertaken to manage LTCs, and revealed that carers of patients with LTCs appear to primarily engage in biographical and emotional support, which may be more difficult to conceptualise as legitimate caring ‘work’. Participants indicated that health professionals may be in a unique position to validate their role as carers and encourage support seeking. The study suggests how the greater focus on self‐management of LTCs in the community must be complemented by recognition of this group as potentially ‘hidden carers’, who support the patient to minimise the impact the illness has on their lives and consequently may minimise their own caring role, with negative implications for support seeking.

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Caring for older people in the 21st century: 'notes from a small island'

Drawing on carer narratives from research undertaken in New Zealand, this paper considers the interrelationship between place and the care-giving experience. In doing so, it considers: first, how informal carers of older people experience the transition in the place of care from the home to care homes; second, how they negotiate new identities for themselves as carers in these new care settings; and third, carers' views on how we might develop more inclusive models of care in care home settings. While much current work on care-giving in the home highlights the blurring of the boundaries between formal and informal care-giving, this paper suggests that the blurring of the boundaries of care may also be manifest in an increased penetration of informal care-giving within the semi-public space of the residential care home. 

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'The Tender Trap': Gender, Part-Time Nursing and the Effects of 'Family-Friendly' Policies on Career Advancement

With the Government promoting flexible and ‘family-friendly’ policies within the NHS, an increase in the number of part-time nurses is imminent, particularly in view of current pro-active recruitment drives in this area. Research, however, indicates that it is mainly female employees who continue to utilise such policies with few male nurses employed on a part-time or flexible basis. Working part-time and taking career breaks, usually because of caring commitments, results in female nurses falling behind male colleagues in terms of career development and promotion prospects, with managers selecting males over females (particularly those who work part-time) regarding functional role allocation in the hospital setting. Based on a recent study of full-time and part-time nurses and their managers in three Outer London NHS Trusts, this paper argues that so-called ‘family-friendly’ policies must target both sexes and that the underlying attitudes of men to childcare and the domestic division of labour must change before the sexes can compete on equal terms in the workplace. Until this happens men will continue to advance the development of their nursing careers more rapidly than women. Already, in a female-dominated area of employment, male nurses form a disproportionate percentage of those in higher grades and management posts.

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The recognition of and response to dementia in the community: lessons for professional development

Adult learning approaches require professionals to identify their learning needs. Learning about dementia syndromes is a complex task because of the insidious onset and variable course of the disease processes, the inexorability of cognitive and functional loss, and the emotional impact of neurodegenerative disorders on those experiencing them and on their family and professional carers. This report describes the ways in which learning tasks were understood and articulated by 774 community-based professionals from different disciplines, working in nominal groups in 24 settings across the United Kingdom, and explores how these groups set about identifying their learning needs. These groups focused on being insufficiently skilled to carry out educational functions, on solving problems of limited resources and inflexible systems, and on carers rather than on people with dementia. The groups’ solution hinged on multidisciplinary learning being the best route to achieving system change, but such an approach to learning was dealt with uncritically. Three themes received scant attention: the impact of practitioners’ own emotional responses to dementia on their clinical or practical skills; the educational potential of voluntary organizations; and the value of learning from the person with dementia, as much as from their carers. Professional development should therefore widen the debate about recognition of dementia to improvement of timely responses. It should concentrate on developing capacities not only around diagnosis, but also around communication and support.

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Social care: fourteenth report of session 2010-12: volume 1: report, together with formal minutes

The report and formal minutes of the Health Committee inquiry into the issues facing the future of social care. The report also makes recommendations to Government in advance of its White Paper on social care and update on funding. It discusses how a fully integrated system could be achieved with more efficient use of resources and the improved outcomes that it could deliver. The main sections of the report cover: The fragmentation of services and commissioning; Integrating around older people; Funding and staffing in an integrated system; The Dilnot Commission; The needs of carers; and A new offer for older people. The content focuses on people aged 65 and older, but many of the recommendations are equally relevant to services for younger people who have a disability, and other people who have long-term conditions. Volume II contains oral and written evidence; Volume III contains additional written evidence.

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Trends in health outcomes for family caregivers of hip-fractured elders during the first 12 months after discharge

Aim.  This article reports on trends in health outcomes for family caregivers of hip-fractured patients and the effects of social support on these outcomes.

Background.  Little is known about the impact of caregiving on the health outcomes of family caregivers of patients with hip fracture.

Method.  For this prospective, correlational study, data were collected from 135 family caregivers of hip-fractured elders (2001–2005). Data on health-related quality of life and social support were collected from family caregivers at 1, 3, 6 and 12 months after discharge of the older hip-fractured patient.

Findings.  During the 12 months after the patients’ discharge, family caregivers’ scores improved significantly in role performance-related scales, including bodily pain, social function, role limitations due to emotional problems and role limitations due to physical problems. However, caregivers’ scores for general health and mental health were significantly lower at 12 months [59·91 (sd = 24·54) and 65·91 (sd = 14·36) respectively] than at 1 month after discharge [64·35 (sd = 23·29) and 67·94 (sd = 18·47) respectively]. The trends for most subscale scores for health-related quality of life were positively related to perceived availability of social support.

Conclusions.  Caring for a hip-fractured older family member over a sustained period may enhance family caregivers’ role performance, but have a negative impact on their perceived general health and mental health. These results suggest that home care nurses should develop interventions early after discharge to assess and improve family caregivers’ health perception, mental health and social support.

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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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Refreshed autistic spectrum disorder strategic action plan

This new Strategic Action Plan has been developed in response to what people with autism, their families and carers have said is important to them. We have also worked with a wide range of stakeholders to identify some key priority themes and actions that will make a real difference to the lives of children and adults with autism. The Plan sets out what we have done, what we were told and what we will do. It has three key priority areas:  Awareness raising, information and training;  Assessment and diagnosis; and  Meeting support needs. 

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Coping with newly diagnosed upper gastrointestinal cancer: a longitudinal qualitative study of family caregivers' role perception and supportive care needs

Background: Family caregivers of patients with poor prognosis upper gastrointestinal (GI) cancers are at high risk of experiencing psychological distress and carer burden. The early postoperative period is a time of high patient care needs and transition of care, with carers new to the caring role. This study aimed to explore the experiences of family caregivers of people diagnosed with upper GI cancer after surgical intervention to (1) identify their unmet supportive care needs and (2) investigate how family caregivers perceive their role during this time.

Methods: Family caregivers of newly diagnosed postsurgical upper GI cancer patients were recruited. Semi-structured telephone interviews were conducted at 3 weeks and 3 months post-surgery. Analysis involved a constant comparative approach. Sampling was discontinued when information redundancy was achieved. Fifteen family caregivers participated in the first interview and eight agreed to a second interview.

Results: Family caregivers reported significant information and support needs. Family caregiver distress was exacerbated by a lack of patient care knowledge. Access to support was limited by caregivers’ lack of understanding of the health system. Family caregivers view their role as part of their family responsibility.

Conclusions: This study provides new insight into the supportive care needs of family caregivers of upper GI cancer patients and the impact of unmet need on the emotional well-being of family caregivers. These results will inform future supportive care service development and intervention research aimed at reducing unmet supportive care needs and psychological distress of family caregivers of patients with poor prognosis upper GI cancer

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Joint declaration on post-diagnostic dementia care and support

A shared approach to improving the care and support for people with dementia, their families and carers receive following a diagnosis. The declaration sets out: a shared commitment to joint action across government, health, social care, the third sector and all other relevant partners; the ambition to deliver better quality post-diagnostic care; and the need to deliver integrated and effective services that meet the needs of people with dementia and their families and carers.

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Listening to and learning from the family carer's story: an innovative approach in interprofessional education

Meeting family carers who recount their experiences of being on the receiving end of health and social care provides a 'real life' context in which undergraduate students from different professions can explore together and learn about interprofessional care and teamwork. This paper draws on data from a three-month in-depth evaluation of palliative care workshops in which medical, nursing, social work and rehabilitation therapy students interview family carers who are caring for someone with a terminal illness or who have recently been bereaved. The evaluation showed that students responded positively to 'real world' learning and coped well when carers were upset or recounted distressing incidents. Meeting the carer had a profound impact on the students- to the extent that some said they were 'changed' by the experience and felt it would significantly influence their professional behaviour. Hearing the carer's story also allowed them to pinpoint new and significant insights into their own profession and into healthcare provision generally. Family carers' views of their experience of the workshops were also sought and they too reported benefits from meeting the students. They found the experience cathartic and therapeutic and were both surprised and impressed by the maturity of the students who were able to respond to their distress. The paper also discusses the practicalities involved in recruiting the carers, issues of preparation and debriefing and lessons which will be useful to others who may wish to involve family carers in education.

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Development of an instrument to measure self-efficacy in caregivers of people with advanced cancer

OBJECTIVE: Informal caregivers of people with advanced cancer experience many negative impacts as a result of their role. There is a lack of suitable measures specifically designed to assess their experience. This study aimed to develop a new measure to assess self-efficacy in caregivers of people with advanced cancer.

METHODS: The development and testing of the new measure consisted of four separate, sequential phases: generation of issues, development of issues into items, pilot testing and field testing. In the generation of issues, 17 caregivers were interviewed to generate data. These data were analysed to generate codes, which were then systematically developed into items to construct the instrument. The instrument was pilot tested with 14 health professionals and five caregivers. It was then administered to a large sample for field testing to establish the psychometric properties, with established measures including the Brief Cope and the Family Appraisals for Caregiving Questionnaire for Palliative Care.

RESULTS: Ninety-four caregivers completed the questionnaire booklet to establish the factor structure, reliability and validity. The factor analysis resulted in a 21-item, four-factor instrument, with the subscales being termed Resilience, Self-Maintenance, Emotional Connectivity and Instrumental Caregiving. The test-retest reliability and internal consistency were both excellent, ranging from 0.73 to 0.85 and 0.81 to 0.94, respectively. Six convergent and divergent hypotheses were made, and five were supported.

CONCLUSIONS: This study has developed a new instrument to assess self-efficacy in caregivers of people with advanced cancer. The result is a four-factor, 21-item instrument with demonstrated reliability and validity. Copyright © 2012 John Wiley & Sons, Ltd.

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Caring for carers

Department of Health strategy for supporting informal carers 'Carers at the Heart of 21st Century Families and Communities' (2008), which addresses government short-term commitments and a 10-year plan. The key principles are summarised and reactions from carers and organisations are reviewed. A case study of a community learning disability nurse supporting a mother and her learning disabled son is included. [(BNI unique abstract)] 

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Carers at the heart of 21st-century families and communities

This strategy sets the government agenda for supporting carers over the next 10 years ranging across the span of government’s responsibilities. Short-term changes are to be implemented over the next three years, and longer-term priorities are identified for the next 10 years. The strategy addresses breaks, personalisation of services, income, information and advice, the workplace, training for the workforce, access to employment, emotional support, the health of carers and the specific needs of young carers. . The strategy is based on the views and concerns of carers themselves, drawn from consultation across the country.

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Caring and Retirement: Crossroads and Consequences

As older workers move closer to retirement, they are more likely to take on caring roles. This may affect their health, retirement plans, and income security. Retired men and women experience the caring role differently, with men less likely to be adversely affected and more likely to accept services and to derive satisfaction from caring. Carers make an important contribution to the lives of the people they care for and to the community. Caring is a productive role that can be sustained into older age, as long as the carer's health and well-being are maintained. More research is needed on the relationship between retirement and caring, to explore the extent of caring and its impact on retirement plans, income, and the physical and mental health of retired carers. This information could then be built into retirement planning to better prepare older workers for this important role. Caring roles and retirement intersect in several ways. About 6 million Americans, 2.6 million Australians, and 6 million people in the United Kingdom are informal carers. People (especially men) are more likely to take on caring roles as they get older and leave the paid workforce. The need to care for a spouse or older relative can be an unanticipated outcome or a precipitator of retirement. Retirement may coincide with illness or disability of a parent or spouse, or may be forced by the demands of caring. Caring may bring about major changes to retirement plans. The financial impact of having been a carer during one's working life may also be felt most keenly on retirement, through the lack of opportunities for savings and retirement fund co-contributions.

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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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Worry and time: the unseen costs of informal care

Objectives: The objective of this study is to examine the experiences of informal carers in terms of how their time spent caring is related to worry. Is worry about a care recipient a care practice, and if so, to what extent it can be understood temporally? Methods: Classical phenomenology underpinned this study. Three qualitative studies of people living with chronic illness in Australia were conducted between 2009 and 2013. Semi-structured interviews were conducted. Interviews were audio recorded and transcribed verbatim. Phenomenological thematic analysis of the data was undertaken. Results: Twenty-five informal carers participated. The findings pivot around three interconnected themes: time, worry and cost. Worry was identified as a temporally bound unseen cost to carers that informs carer identity irrespective of culture, ethnicity, or social status. Discussion: Worry is a practice that most carers report engaging in and it is one that comes with a temporal cost—it keeps people busy looking after the needs of others during the day and it keeps some people awake when they would rather be sleeping. Worry takes time and effort, it informs people’s construction of their own sense of self, motivates acts of care, and informs carers’ imaginings of what their future and that of their loved one(s) may entail.

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Why do patients with stroke not receive the recommended amount of active therapy (ReAcT)? Study protocol for a multisite case study investigation

Introduction Increased frequency and intensity of inpatient therapy contributes to improved outcomes for stroke survivors. Differences exist in the amount of therapy provided internationally. In England, Wales and Northern Ireland it is recommended that a minimum of 45 min of each active therapy should be provided at least 5 days a week provided the therapy is appropriate and that the patient can tolerate this. Sentinel Stroke National Audit Programme (2014) data demonstrate this standard is not being achieved for most patients. No research been undertaken to explore how therapists in England manage their practice to meet time-specific therapy recommendations. The ReAcT study aims to develop an in-depth understanding of stroke therapy provision, including how the guideline of 45 min a day of each relevant therapy, is interpreted and implemented by therapists, and how it is experienced by stroke-survivors and their families.

Methods and analysis A multisite ethnographic case study design in a minimum of six stroke units will include modified process mapping, observations of service organisation, therapy delivery and documentary analysis. Semistructured interviews with therapists and service managers (n=90), and with patients and informal carers (n=60 pairs) will be conducted. Data will be analysed using the Framework approach.

Ethics and dissemination The study received a favourable ethical opinion via the National Research Ethics Service (reference number: 14/NW/0266). Participants will provide written informed consent or, where stroke-survivors lack capacity, a consultee declaration will be sought. ReAcT is designed to generate insights into the organisational, professional, social, practical and patient-related factors acting as facilitators or barriers to providing the recommended amount of therapy. Provisional recommendations will be debated in consensus meetings with stakeholders who have not participated in ReAcT case studies or interviews. Final recommendations will be disseminated to therapists, service managers, clinical guideline developers and policymakers and stroke-survivors and informal carers.

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Can Fire and Rescue Services and the National Health Service work together to improve the safety and wellbeing of vulnerable older people? Design of a proof of concept study

Background: Older adults are at increased risk both of falling and of experiencing accidental domestic fire. In addition to advanced age, these adverse events share the risk factors of balance or mobility problems, cognitive impairment and socioeconomic deprivation. For both events, the consequences include significant injury and death, and considerable socioeconomic costs for the individual and informal carers, as well as for emergency services, health and social care agencies. Secondary prevention services for older people who have fallen or who are identifiable as being at high risk of falling include NHS Falls clinics, where a multidisciplinary team offers an individualised multifactorial targeted intervention including strength and balance exercise programmes, medication changes and home hazard modification. A similar preventative approach is employed by most Fire and Rescue Services who conduct Home Fire Safety Visits to assess and, if necessary, remedy domestic fire risk, fit free smoke alarms with instruction for use and maintenance, and plan an escape route. We propose that the similarity of population at risk, location, specific risk factors and the commonality of preventative approaches employed could offer net gains in terms of feasibility, effectiveness and acceptability if activities within these two preventative approaches were to be combined.

Methods/Design: This prospective proof of concept study, currently being conducted in two London boroughs, (Southwark and Lambeth) aims to reduce the incidence of both fires and falls in community-dwelling older adults. It comprises two concurrent 12-month interventions: the integration of 1) fall risk assessments into the Brigade's Home Fire Safety Visit and 2) fire risk assessments into Falls services by inviting older clinic attendees to book a Visit. Our primary objective is to examine the feasibility and effectiveness of these interventions. Furthermore, we are evaluating their acceptability and value to key stakeholders and services users.

Discussion: If our approach proves feasible and the risk assessment is both effective and acceptable, we envisage advocating a partnership model of working more broadly to fire and rescue services and health services in Britain, such that effective integration of preventative services for older people becomes routine for an ageing population.

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Understanding stroke survivors' and informal carers' experiences of and need for primary care and community health services--a systematic review of the qualitative literature: protocol

Introduction Despite the rising prevalence of stroke, no comprehensive model of postacute stroke care exists. Research on stroke has focused on acute care and early supported discharge, with less attention dedicated to longer term support in the community. Likewise, relatively little research has focused on long-term support for informal carers. This review aims to synthesise and appraise extant qualitative evidence on: (1) long-term healthcare needs of stroke survivors and informal carers, and (2) their experiences of primary care and community health services. The review will inform the development of a primary care model for stroke survivors and informal carers.

Methods and analysis We will systematically search 4 databases: MEDLINE, EMBASE, PsycINFO and CINAHL for published qualitative evidence on the needs and experiences of stroke survivors and informal carers of postacute care delivered by primary care and community health services. Additional searches of reference lists and citation indices will be conducted. The quality of articles will be assessed by 2 independent reviewers using a Critical Appraisal Skills Programme (CASP) checklist. Disagreements will be resolved through discussion or third party adjudication. Meta-ethnography will be used to synthesise the literature based on first-order, second-order and third-order constructs. We will construct a theoretical model of stroke survivors’ and informal carers’ experiences of primary care and community health services.

Ethics and dissemination The results of the systematic review will be disseminated via publication in a peer-reviewed journal and presented at a relevant conference. The study does not require ethical approval as no patient identifiable data will be used.

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Direct payments guidance: Community Care, Services for Carers and Children's Services (Direct Payments (Wales) Guidance 2011

Guidance to help local authority social services in making, managing and administering direct payments. The guidance applies to children's adults' services and services for carers. It explains how direct payments schemes should be developed locally, how issues of consent, capacity and ability to manage should be approached, and how direct payments should be used. It sets out specific delivery issues, including: choice and risk; health and safety; close relatives; direct payments recipients as employers; and Criminal Record Checks. It then explains where additional support is required and available, describes the monitoring and review process, and includes a section on troubleshooting . Further information and contacts are included in the annexes. The guidance replaces the Direct Payments Policy and Practice Guidance 2004.

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Macmillan Carers Schemes in England: results of a multicentre evaluation

Maintaining sick and elderly people at home, particularly as they approach the end of life, is a long-established challenge for health and social care services. Over the past 30 years palliative care providers have attempted a variety of innovations in this area. We report on a descriptive study of seven pilot Macmillan Carers Schemes in England. The schemes sought to provide practical and emotional help to cancer patients and families living in their own homes. Data are available on 624 referrals to the schemes over a 1-year period. Emphasizing comparisons between schemes, we report on reasons for and sources of referral, services offered, number and duration of visits and tasks undertaken. We consider the views of informal carers who made use of the service, the perceptions of Macmillan carers themselves, and we compare financial costs of schemes. It is concluded that the schemes have the potential for further development but face problems, which reflect on their borderline position between ‘health’ and ‘social care’. Current policy changes may be beneficial to the schemes in this respect.

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Non-malignant palliative care: striving for equity

The article explores the problems associated with the provision of palliative care to people with non-malignant disease. The major challenges to the provision of such care include difficulties around prognostication and a reluctance to discuss end-of-life issues. Information is also presented on symptoms management and the need to support informal carers.

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Local authorities' use of carers grant: a report prepared for the Department of Health

This is the report of a study undertaken by the University of Leeds and commissioned by the Department of Health that aimed to get a better understanding of how local authorities in England spent their Carers' Grant allocations between 2005 and 2007 and how it enabled them to improve support for carers in their area. First introduced in April 1999, the Carers' Grant is provided to all councils with responsibility for social services in recognition of the support carers need for breaks and other services. [DH website abstract]

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Standardization of the Maristán Scale of Informal Care in people with schizophrenia and other psychoses

OBJECTIVE: No instrument has been developed and validated across cultures to measure the degree of support provided by informal carers to people with schizophrenia. We aimed to develop such a measure.

METHOD: The Maristán Scale of Informal Care was developed directly from the views of patients with schizophrenia in six countries. Face-to-face interviews were carried out with participants and 103 were repeated after 30 days. Principal Axis Factoring followed by Promax rotation evaluated the structure of the scale. Horn's parallel combined with bootstrapping determined the number of factors. Cronbach's alpha estimated the scale's internal consistency and intra-class correlation its test-retest reliability.

RESULTS: A total of 164 interviews were undertaken, 103 with re-test. The Horn's Parallel Analysis and the analysis of the Promax rotation revealed one factor. Cronbach's alpha was 0.89. Intra-class correlation coefficient was 0.56 (95% CI 0.42-0.68) and this increased to 0.64 (95% CI 0.51-0.75) after removing two outlying values. Patients from Argentina recorded the lowest scores (poor informal support/care).

CONCLUSION: The Maristán Scale of Informal Care is a reliable instrument to assess the degree of support provided by informal carers to people with schizophrenia across cultures. A confirmatory factor analysis is needed to evaluate the stability of its factor structure. © 2013 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

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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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A potential model for the first all Wales mental health service user and carer-led research group

This paper will inform mental health service users and carers on how a University in Wales established a service user and carer-led research group. * The group's primary aim will be to undertake its own service user and carer-led research projects. * Mental health service users have undergone empowerment and research training at a University in Wales. This is an important initiative because it is the first service user and carer-led research group in Wales. * This paper is co-authored by a mental health service user and includes transcripts of service users' stories written in their words. Abstract Service user and carer involvement in research has been gaining momentum in recent years. However, this involvement to date has primarily been as research respondents or 'subjects' in research studies. A group of mental health service users at a University in Wales underwent empowerment and research training to enable them to become active participants in the research process; this training was a necessary step to equip mental health service users with the skills to become independent researchers and to carry out service user-led research. We included transcripts from mental health service users on their views of the empowerment and research training received. We are not reporting, in this paper, on the findings from a research study rather it aims to inform readers how a service user and carer-led research group has been established in Wales. The group has two purposes: (1) to train service users in research methodologies, and thus for them to gain essential research skills; and (2) to undertake their own service user and carer-led research projects thereby implementing the research skills they have acquired from the training. The latter is a primary aim of the group; a future paper will report on its development.

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The attitudes of carers and old age psychiatrists towards the treatment of potentially fatal events in end-stage dementia

BACKGROUND: Deciding how to treat patients with end-stage dementia developing potentially fatal events has long been contentious. Under expected new legislation the role of carers is likely to increase. Old age psychiatrists frequently have to decide between active or palliative approaches to such patients. Little is known concerning the comparative attitudes of carers and old age psychiatrists. This research examined how their attitudes differed.

METHODS: A Likert scale attitudinal questionnaire was designed following a literature review and was initially distributed to a pilot group of medical students to aid in establishing reliability and validity. Subsequently it was sent to all members of the local Alzheimer's Society Branch and all the old age psychiatrists in the health region. Its validity and reliability were investigated using factor analysis and test-retest reliability. Between group comparisons were then made using the students t-test and analysis of variance.

RESULTS: 148 carers and 34 clinicians responded. Factor analysis and test-retest analysis of students' responses validated six questions, which grouped into two factors, relating to active treatment and patient-centred ethics. Between group comparisons revealed significant differences between carers' and clinicians' attitudes in these areas. Clinicians favoured active treatment of potentially fatal events in end-stage dementia less than carers who more significantly valued patient-centred issues such as dying with dignity, the patient's best interests and the patient's wishes.

CONCLUSIONS: Old age psychiatrists and carers significantly differed in their attitudes towards treatment of potentially fatal events in end-stage dementia and this may impact on decision-making. Considerably more clinician/carer debate and dialogue seems needed.

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Best practice in fall prevention: roles of informal caregivers, health care providers and the community

Falls are an important public health problem for older adults, resulting in significant morbidity and mortality, as well as healthcare costs. Evidence supports the assessment of older adults' fall risks and implementation of interventions to reduce these risks. Older adults are the key stakeholder in preventing falls, but need the support of their informal caregivers, healthcare providers, and community groups. This article addresses the roles of these additional stakeholders in providing and supporting best practices in fall prevention. Together these stakeholders can assist older adults in self-management of fall prevention, based on the preferences of the individual, local resources, and available programmes and healthcare services.

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Dysphagia: the challenge of managing eating and drinking difficulties in children and adults who have learning disabilities

This review explores some of the key issues relevant to children and adults who have dysphagia, or eating, drinking and swallowing difficulties, and a learning disability. It explores the methods for attempting to identify this area of difficulty effectively, and reflects on some of the other issues that may affect management, such as carer support and training and use of appropriate communication strategies to support and enable participation from the client with learning disability.

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What do carers of people with psychosis need from mental health services? Exploring the views of carers, service users and professionals

The literature on carer burden, needs and interventions developed to address care needs of those caring for people with psychosis are reviewed. The findings of a study which explored the views and experiences of carers, service users and professionals with regard to what carers of people with psychosis need from mental health services are then reported.

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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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Training care givers of stroke patients : economic evaluation

Background Training care givers reduces their burden and improves psychosocial outcomes in care givers and patients at one year. However, the cost effectiveness of this approach has not been investigated. Objective To evaluate the cost effectiveness of caregiver training by examining health and social care costs, informal care costs, and quality adjusted life years in care givers. Design A single, blind, randomised controlled trial. Setting Stroke rehabilitation unit. Subjects 300 stroke patients and their care givers. Interventions Caregiver training in basic nursing and facilitation of personal care techniques compared with no caregiver training. Main outcome measures Health and social care costs, informal care costs, and quality adjusted life years in care givers over one year after stroke. Results Total health and social care costs over one year for patients whose care givers received training were significantly lower (mean difference -£4043 ($7249; €, 95% confidence interval -£6544 to -£1595). Inclusion of informal care costs, which were similar between the two groups, did not alter this conclusion. The cost difference was largely due to differences in length of hospital stay. The EQ-5D did not detect changes in quality adjusted life years in care givers. Conclusion Compared with no training, caregiver training during rehabilitation of patients reduced costs of care while improving overall quality of life in care givers at one year.

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Bridging troubled waters: family caregivers, transitions and long term care

Families are the bedrock of long-term care, but policymakers have traditionally considered them “informal” caregivers, as they are not part of the formal paid caregiving workforce. As chronic and long-term care systems have become more complex and as more demanding tasks have been shifted to families, this view is no longer sustainable. The care transition process offers a critical opportunity to treat family caregivers as important care partners. Enhancing their involvement, training, and support will contribute to reducing unnecessary rehospitalizations and improving patient outcomes. The contributions and experiences of family caregivers should be considered in gathering information to shape policies and practice; training health care professionals; developing programs; and reforming financing.

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Living well with dementia: A participation and engagement programme for people with dementia and their carers. Development and evaluation report.

This report outlines the developmental process and evaluation outcomes of a pilot Participation and Engagement programme for people with dementia and their carers, designed and delivered in the north east of England from June 2013 to December 2014. The programme was commissioned by the North East Dementia Alliance and developed through a collaboration with the North of England Mental Health Development Unit (NEMHDU) and leadership experts Karen Picking & Associates. 

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Social Services and Well-being (Wales) Act: assessing and meeting needs

Information leaflet which summarises key points relation to the assessment and meeting care and support needs by local authorities under the Social Services and Well-being (Wales) Act. The leaflet covers assessing an individua'l's needs when the individual is a child or a carer; whether it is possible for a person can refuse a needs assessment; what happens after an assessment; and what to do if an individual does not have 'eligible needs'.

The demographic characteristics and economic activity patterns of carers over 50: evidence from the English Longitudinal Study of Ageing

Studies on informal care provision have often focused on the provision of care for persons with a long term physical or mental ill-health or disability, or problems related to old age. However, the provision of care and support more broadly, for example in the form of childcare for grandchildren, can also impact on various aspects of a carer's life, such as their employment (if under the state retirement age), lifetime earnings and, by extension, pension income in later life. This article uses data from Wave 3 of the English Longitudinal Study of Ageing (ELSA) to explore the demographic characteristics, caring patterns, health status and economic activity patterns of carers aged over 50 in England. The results suggest that the nature of care provision differs across age groups, and that caring can be quite a different experience for older men and women. This article also sheds light on the characteristics of ‘round-the-clock’ carers, a relatively under-researched group which makes up just over one fifth of all carers aged 50 and over.

This article uses data from Wave 3 of the English Longitudinal Study of Ageing (ELSA) to explore the demographic characteristics, caring patterns, health status and economic activity patterns of carers aged over 50 in England.

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Burden and happiness in head and neck cancer carers: the role of supportive care needs

Purpose: Our study aimed to investigate the relationship between unmet supportive care needs and carer burden and happiness, in head and neck cancer (HNC).

Methods: Two hundred eighty-five HNC informal carers were sent a postal questionnaire between January and June 2014, which included the supportive care needs survey for partners and caregivers of cancer survivors (SCNS-P&C) and the CarerQol, which assesses burden and happiness. Multiple regression analysis was conducted to examine the association of (i) carer characteristics, (ii) carer situation, and (iii) unmet supportive care needs, with carer burden and happiness

Results: One hundred ninety-seven carers completed the questionnaire (response rate = 69 %), 180 of whom were included in the analysis. The majority were female (76 %), not in paid employment (68 %) and caring for their spouse (67 %). On average, carers reported relatively low levels of burden and relatively high levels of happiness. Carer factors explained 42 % of variance in levels of burden and 24 % of variance in levels of happiness. Healthcare service needs were associated with carer burden (β = .28, p = .04), while psychological needs (β = −.38, p = .028), health care service needs (β = −.30, p = .049), information needs (β = .29, p = .028), carer comorbidity (β = −.18, p = .030), and gender (β = −.16, p = .045) were associated with happiness.

Conclusions: Our results indicate that different aspects of carer characteristics and unmet needs are associated with carer burden and happiness. Efforts directed at reducing unmet healthcare service needs in particular are merited given their associations with both aspects of carer quality of life.

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The experiences of young carers: a meta-synthesis of qualitative findings

The aim of this meta-synthesis was to explore young carers' accounts of caring for a family member with an illness, difficulty or disability, and to promote a phenomenological understanding of their experiences. A meta-ethnographic method of meta-synthesis was adopted, utilising the process of reciprocal translation to synthesise 11 qualitative studies. The synthesis yielded four main concepts: (1) becoming a caring person; (2) the adult child - the marks of being different; (3) who is a carer? - others' expectations and stigmatisation; and (4) keeping caring as a secret - protecting the caring role and identity. The synthesis of translation generated the higher-order concept of 'integrating caring into an emerging identity'. This concept considers the experiences of young carers as a process of identity formation in the face of persistent stressful experiences from both within and outside the caring role. The clinical implications of these findings are discussed. 

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From values to action: the Chief Nursing Officer’s review of mental health nursing

This document sets out recommendations for guiding the development of mental health nursing, with the core aim of improving the outcomes and experience of care for service users and carers.

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Supporting mum

These photographs are just some of nearly 300 taken by young carers to describe their lives. Jo Aldridge and Darren Sharpe report.

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Family caregivers' views on coordination of care in Huntington's disease: a qualitative study

BACKGROUND: Collaboration between family caregivers and health professionals in specialised hospitals or community-based primary healthcare systems can be challenging. During the course of severe chronic disease, several health professionals might be involved at a given time, and the patient's illness may be unpredictable or not well understood by some of those involved in the treatment and care.

AIM: The aim of this study was to explore the experiences and expectations of family caregivers for persons with Huntington's disease concerning collaboration with healthcare professionals.

METHODS: To shed light on collaboration from the perspectives of family caregivers, we conducted an explorative, qualitative interview study with 15 adult participants experienced from caring for family members in all stages of Huntington's disease. Data were analysed with systematic text condensation, a cross-case method for thematic analysis of qualitative data.

RESULTS: We found that family caregivers approached health services hoping to understand the illness course and to share their concerns and stories with skilled and trustworthy professionals. Family caregivers felt their involvement in consultations and access to ongoing exchanges of knowledge were important factors in improved health services. They also felt that the clarity of roles and responsibilities was crucial to collaboration.

CONCLUSIONS: Family caregivers should be acknowledged for their competences and should be involved as contributors in partnerships with healthcare professionals. Our study suggests that building respectful partnerships with family caregivers and facilitating the mutual sharing of knowledge may improve the coordination of care. It is important to establish clarity of roles adjusted to caregivers' individual resources for managing responsibilities in the care process.

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Mental health academics in the university departments of rural health: Roles and contributions

The author comments on the limited access to Australian mental health care particularly in rural and remote settings. He cites an article by Alexander and Fraser which reports that poor access to specialists and mental health services in some rural settings prevents patients from being treated by their general practitioners. Due to this, the large burden of care falls to families and informal carers. Recommendations on how to improve access to mental health services are also discussed.

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Inter-relationships between the economic and emotional consequences of colorectal cancer for patients and their families: a qualitative study

Background: While the evidence-base concerning the economic impact of cancer for patients and their families/carers has grown in recent years, there is little known about how emotional responses to cancer influence this economic impact. We investigated the economic costs of cancer in the context of patients’ emotions and how these both shaped the patient and family burden.

Methods: Health professionals from six hospitals invited patients diagnosed with colorectal cancer (ICD10 C18-C20) within the previous year to take part in the study. Semi-structured face-to-face interviews were conducted with patients and, where available, a family member. Interviews covered medical and non-medical costs incurred as a result of cancer and the impact of these on the lives of the patient and their family. Interviews were audio-recorded. Recordings were transcribed verbatim and these data were analysed qualitatively using thematic content analysis.

Results: Twenty-two patients with colorectal cancer (17 colon and 5 rectal; 14 women and 8 men) were interviewed; 6 were accompanied by a family member. Important cancer-related financial outlays included: travel and parking associated with hospital appointments; costs of procedures; increased household bills; and new clothing. Cancer impacted on employed individuals’ ability to work and depressed their income. The opportunity cost of informal care for carers/family members, especially immediately post-diagnosis, was a strong theme. All patients spoke of the emotional burden of colorectal cancer and described how this burden could lead to further costs for themselves and their families by limiting work and hindering their ability to efficiently manage their expenses. Some patients also spoke of how economic and emotional burdens could interact with each other. Support from employers, family/carers and the state/health services and patients’ own attitudes influenced this inter-relationship.

Conclusions: The economic impact of colorectal cancer on patients and their families is complex. This study suggests that the economic costs and the emotional impact of cancer are often related and can exacerbate each other, but that various factors can meditate this inter-relationship.

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Caring for a person in advanced illness and suffering from breathlessness at home: threats and resources

Little is known about the factors that mediate the caregiving experience of informal carers at home, which could inform about ways of supporting them in their caregiving role. Our objective was to investigate the caring experience of carers for patients with an advanced progressive illness (chronic obstructive pulmonary disease [COPD], heart failure, cancer, or motor neuron diseases [MND]), who suffer from breathlessness.

A purposive sample of 15 carers was selected. They were recruited via the patients they cared for (who suffered from COPD, cancer, MND, or heart failure) from the hospital and the community. Data were collected through semistructured, in-depth interviews. All were tape-recorded and transcribed verbatim. The analysis used a Grounded Theory approach and NVivo software facilitated the management and analysis of the data.

Several key issues affected caring in a positive or a negative way. The threats to caring were uncertainty, carers' own health problems, an imploded world, negative reactions from outside, person loss, and acute exacerbations. Resources that carers drew on were acceptance, self-care, availability of support, feeling that caring is a shared responsibility with the patient, and “getting on with” caring in case of emergencies. Breathlessness was particularly challenging, and carers did not have any strategies to relieve the symptom. They were ill prepared for acute exacerbations.

Carers need to be included in opportunities for support provision in advanced illness. Negotiated involvement of a health professional could buffer the heavy responsibilities related to home care. They could provide problem-solving skills and build on the resources that carers draw on in response to what they experience as most threatening to their caring role.

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Needs and care of older people living at home in Iceland

Background: The Icelandic old-age care system is universal and the official goal is to support older people live independently for as long as possible. The aim of this study is to analyse living conditions and use of formal and informal care of older people in Iceland. Methods: The results are based on the new study ICEOLD, a telephone survey which included questions on social network, health, activities of daily living, and received support from the community and/or from relatives, neighbours, and friends. Results: Almost half of the sample (47%) receives some kind of care, with 27% of them receiving only informal care, which is understood to mean that informal care is of great importance and families are the main providers of help. For hypothetical future long-term care, older people wish to be cared for in their homes, but those already in need of assistance prefer to be cared for in institutions. Discussion: Caring relatives are the main providers of support to older people in their homes and it is important to provide them with suitable formal support when the care responsibility increases. Conclusions: As the care system in Iceland is now under reconstruction, the important contribution of informal carers must be recognised and taken into account when planning the care of older people.

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Out-of-hours palliative care: a qualitative study of cancer patients, carers and professionals

Background: New out-of-hours healthcare services in the UK are intended to offer simple, convenient access and effective triage. They may be unsatisfactory for patients with complex needs, where continuity of care is important.

Aim: To explore the experiences and perceptions of out-of-hours care of patients with advanced cancer, and with their informal and professional carers.

Design of study: Qualitative, community-based study using in-depth interviews, focus groups and telephone interviews.

Setting: Urban, semi-urban and rural communities in three areas of Scotland.

Method: Interviews with 36 patients with advanced cancer who had recently used out-of-hours services, and/or their carers, with eight focus groups with patients and carers and 50 telephone interviews with the patient's GP and other key professionals.

Results: Patients and carers had difficulty deciding whether to call out-of-hours services, due to anxiety about the legitimacy of need, reluctance to bother the doctor, and perceptions of triage as blocking access to care and out-of-hours care as impersonal. Positive experiences related to effective planning, particularly transfer of information, and empathic responses from staff. Professionals expressed concern about delivering good palliative care within the constraints of a generic acute service, and problems accessing other health and social care services.

Conclusions: Service configuration and access to care is based predominantly on acute illness situations and biomedical criteria. These do not take account of the complex needs associated with palliative and end-of-life care. Specific arrangements are needed to ensure that appropriately resourced and integrated out-of-hours care is made accessible to such patient groups.

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The national outcomes framework for people who need care and support and carers who need support, 2014-15: working document

The national outcomes framework for people who need care and support and carers who need support in Wales has been created to deliver on the actions set out in Sustainable Social Services for Wales: A Framework for Action, and the need to fulfil the duties set out in the Social Services and Well-being (Wales) Act. The framework is made up of a well-being statement and the outcome indicators to measure whether well-being is being achieved. The key objectives of the framework are: to describe the important well-being outcomes that people who need care and support and carers who need support should expect in order to lead fulfilled lives, giving people a greater voice and control over their lives and enable them to make informed decisions to ensure they achieve their personal well-being outcomes; to set national direction and promote the well-being of people who need care and their carers; to provide greater transparency on whether care and support services are improving well-being outcomes for people in Wales using consistent and comparable indicators. This will allow the sector to scrutinise its performance and will shine a spotlight on what needs to be done to improve people’s well-being rather than focussing on the processes involved in delivering social services.

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Putting people first: a shared vision and commitment to the transformation of adult social care

Across Government, the shared ambition is to put people first through a radical reform of public services, enabling people to live their own lives as they wish, confident that services are of high quality, are safe and promote their own individual needs for independence, well-being and dignity. This ministerial concordat establishes the collaboration between central and local government, the sector's professional leadership, providers and the regulator.  It sets out the shared aims and values which will guide the transformation of adult social care, and recognises that the sector will work across shared agendas with users and carers to transform people’s experience of local support and services.

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The carers strategy for Wales 2013

This strategy sets out the key actions the Welsh Government intends to take for the remainder of this Assembly Term, up to 2016. It provides a framework for agencies to work together to deliver services and support to carers. Five priority areas are explained: health and social care; identification, information and consultation; young carers and young adult carers; support and a life outside of the caring role; and carers and employment. The strategy contains 18 key actions, which will form the basis of a report to be published by the end of 2013.

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Consultation on direct payment regulations

Direct payments are crucial to achieving the Government's aim to increase independence, choice and control for service users and their carers through allowing them the opportunity to arrange their own personalised care. The Health and Social Care Act 2008 extends the availability of direct payments to those people who lack the capacity to consent to their receipt. In addition, the government is also reviewing the current exclusions to receiving direct payments for those people who are subject to various provisions of mental health legislation in light of the modernisation of mental health law brought about by the Mental Health Act 2007. The Government is now consulting on regulations relating to these two changes.

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Young and free

New measures to support young carers of people with mental problems could have wider implications, says Tim Turner.

Facts about Carers

Facts about carers 2015 is a Carers UK digest and analysis of all the major research and statistics about carers in the UK.

This briefing covers:

  • Who are carers?
  • How many people are carers?
  • Number of hours of care provided
  • Valuing carers
  • Carer demographics
  • What kind of care do carers provide?
  • Who do they care for?
  • The impact of caring
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Dementia services in remote and rural areas

The authors review current research on provision of services to older people and their carers in remote and rural