Background: As the aging population increases, the rates of degenerative diseases associated with advanced age, such as Alzheimer’s disease and dementia, also rise. Thus, the caregiver population grows in response, increasing the rates of caregiver burden. Caregivers of older adults are usually family members, and providing care to older adults with Alzheimer’s disease and dementia can be very physically and emotionally depleting for the caregivers, leading to negative consequences on the physical and mental health of the caregivers; subsequently leading to caregiver burden. Methods: This systematic literature review examined articles within the APA PsychInfo database related to informal caregivers of Alzheimer’s and dementia patients, caregiver burden, risk factors associated with caregiver burden such as gender, kinship, cohabitation, and marriage status, and coping strategies, interventions, and resources that aid in mitigation of caregiver burden for these types of caregivers. Findings: This search yielded 26 studies that were included based on having met the eligibility criteria. Findings suggest that there are several risk factors associated with increased rates of caregiver burden in this caregiver population. Results addressed the benefits of coping strategies, interventions, and accessible resources on informal caregivers’ QOL and impacts on caregiver burden. Implications regarding ideal and accessible coping strategies and appropriate interventions for informal caregivers of individuals diagnosed with Alzheimer’s disease and dementia was addressed.
Introduction: Dementia is a worldwide health concern with incident rates continuing to increase. While depression prevalence is high in people with dementia and psychological interventions such as cognitive behavioural therapy (CBT) are effective, access to psychological interventions remains limited. Reliance on traditional CBT for people with dementia and depression may present difficulties given it is a complex psychological approach, costly to deliver, and professional training time is lengthy. An alternative approach is behavioural activation (BA), a simpler psychological intervention for depression. The present study seeks to work with people with dementia, informal caregivers, community stakeholders, and healthcare professionals, to adapt a guided low-intensity BA intervention for people with dementia and depression, while maximising implementation potential within the Swedish healthcare context. Methods and analysis: A mixed methods study using codesign, principles from participatory action research (PAR) and normalisation process theory to facilitate the cultural relevance, appropriateness and implementation potential of the intervention. The study will consist of four iterative PAR phases, using focus groups with healthcare professionals and community stakeholders, and semi-structured interviews with people with dementia and informal caregivers. A content analysis approach will be adopted to analyse the transcribed focus groups and semi-structured interviews recordings. Ethics and dissemination: The study will be conducted in accordance with the Declaration of Helsinki and data handled according to General Data Protection Regulation. Written informed consent will be obtained from all study participants. In accordance with the Swedish Health and Medical Services Act, capacity to consent will be examined by a member of the research team. Ethical approval has been obtained from the Swedish Ethical Review Authority (Dnr: 2020-05542 and Dnr: 2021-00925). Findings will be published in an open access peer-reviewed journal, presented at academic conferences, and disseminated among lay and healthcare professional audiences.
Background: In academic research contexts, eHealth interventions for caregivers of people with dementia have shown ample evidence of effectiveness. However, they are rarely implemented in practice, and much can be learned from their counterparts (commercial, governmental, or other origins) that are already being used in practice. Objective: This study aims to examine a sample of case studies of eHealth interventions to support informal caregivers of people with dementia that are currently used in the Netherlands; to investigate what strategies are used to ensure the desirability, feasibility, viability, and sustainability of the interventions; and to apply the lessons learned from this practical, commercial implementation perspective to academically developed eHealth interventions for caregivers of people with dementia. Methods: In step 1, experts (N=483) in the fields of dementia and eHealth were contacted and asked to recommend interventions that met the following criteria: delivered via the internet; suitable for informal caregivers of people with dementia; accessible in the Netherlands, either in Dutch or in English; and used in practice. The contacted experts were academics working on dementia and psychosocial innovations, industry professionals from eHealth software companies, clinicians, patient organizations, and people with dementia and their caregivers. In step 2, contact persons from the suggested eHealth interventions participated in a semistructured telephone interview. The results were analyzed using a multiple case study methodology. Results: In total, the response rate was 7.5% (36/483), and 21 eHealth interventions for caregivers of people with dementia were recommended. Furthermore, 43% (9/21) of the interventions met all 4 criteria and were included in the sample for the case study analysis. Of these 9 interventions, 4 were found to have developed sustainable business models and 5 were implemented in a more exploratory manner and relied on research grants to varying extents, although some had also developed preliminary business models. Conclusions: These findings suggest that the desirability, feasibility, and viability of eHealth interventions for caregivers of people with dementia are linked to their integration into larger structures, their ownership and support of content internally, their development of information and communication technology services externally, and their offer of fixed, low pricing. The origin of the case studies was also important, as eHealth interventions that had originated in an academic research context less reliably found their way to sustainable implementation. In addition, careful selection of digital transformation strategies, more intersectoral cooperation, and more funding for implementation and business modeling research are recommended to help future developers bring eHealth interventions for caregivers of people with dementia into practice.
Background: Caregiving appraisal is a key driver to moderating caregiving outcomes. The caregiving appraisal of informal caregivers of people with dementia requires increased attention. This study aimed to explore the feasibility and acceptability of an evidence‐based bibliotherapy protocol, and test the efficacy on improving caregiving appraisal. Design: A two‐arm pilot randomized controlled trial was adopted. Sixty informal caregivers were randomized to either the intervention group, receiving eight weekly professional‐guided bibliotherapy sessions in addition to usual care; or the usual care group. The professional‐guided bibliotherapy sessions were weekly sessions in which caregivers self‐read the designated chapter and then received telephone coaching. Caregiving appraisal, coping, psychological well‐being, positive aspects of caregiving, knowledge of dementia, and attitude toward dementia were assessed both at baseline and immediately after the intervention. Assessors were blinded to group allocation. Individual interviews among 10 participants from the intervention group were conducted to explorecaregivers' acceptance of the intervention. Descriptive statistics, χ2 test, Mann–Whitney U test, independent t test, generalized estimating equation, and content analysis were used for data analysis. This study pioneered the use of bibliotherapy among informal caregivers of people with dementia. Results: The participant recruitment rate was 69.8%. The attrition rate of the intervention group was 20%. Bibliotherapy had a significant time‐by‐group interaction effect on caregiving appraisal (p < 0.001), coping (p = 0.003), positive aspects of caregiving (p = 0.001), knowledge of dementia (p = 0.017), and attitude toward dementia (p < 0.001). The effect on psychological well‐being, however, was only significant on the personal growth subscale (p = 0.025). The acceptability was also confirmed. No adverse event was documented.
Background: Family caregivers of patients with dementia are at high risk of stress and burden and quarantine due to COVID-19 pandemic may have increased the risk of psychological disturbances in this population. The current study was carried out during the national lockdown declared in March 2020 by the Italian government as a containment measure of the first wave of coronavirus pandemic, and is the first nation-wide survey on impact of COVID-19 lockdown on mental health of dementia informal caregivers. Methods: Eighty-seven Dementia Centers evenly distributed on the Italian territory enrolled 4710 caregiver-patient pairs. Caregivers were delivered a telephone interview assessing classical symptoms of caregiver stress and concern for the consequences of COVID-19 infection on patient’s health. We calculated prevalence of symptoms and regressed them on various potential stress risk factors: caregivers' socio-demographic characteristics and lifestyle, patients' clinical features, and lockdown-related elements, like discontinuity in medical care. Results: Approximately 90% of caregivers reported at least one symptom of stress, and nearly 30% reported four or more symptoms. The most prevalent symptoms were Concern for consequences of COVID-19 on patient's health (75%) and Anxiety (46%). The main risk factors for stress were identified as a conflicting relationship with the patient and discontinuity in assistance, but caregiver's female sex, younger age, lower education and cohabitation with the patient also had an impact. Availability of help from institutions or private individuals showed a protective effect against Sense of Abandonment, but a detrimental effect on concern about the risk for the patient to contract COVID-19. The only protective factor was mild dementia severity, which was associated with a lower risk of feeling isolated and abandoned; type of dementia, on the other hand, did not affect stress risk. Conclusion: Our results demonstrate the large prevalence of stress in family caregivers of patients with dementia during COVID-19 pandemic, and has identified both caregivers and situations at higher risk of stress, that should be taken into account in the planning of interventions in support of quarantined families and patients.
Background and aim: Spouse carers of a person with dementia report feeling lonely and trapped in their role, lacking support and having no time to take care of their own health. In Sweden, the support available for family carers is not specialised to meet the needs of spouse carers of people with dementia. The aim of the study described in this paper was to explore spouse carers' experiences of caring for a partner with dementia, their everyday life as a couple and their support needs. Methods: Nine spouse carers of a partner with dementia living at home were recruited through a memory clinic and a dementia organisation. Semi-structured interviews were conducted with the participants, focusing on their experiences of providing care, their support needs in relation to their caring situation, their personal well-being and their marital relationship. The interviews were transcribed and underwent qualitative content analysis. Results: The analysis resulted in one overall theme Being 'alone' striving for belonging and adaption in a new reality, synthesized from four sub-themes: (1) Being in an unknown country ; (2) Longing for a place for me and us ; (3) Being a carer first and a person second ; and (4) Being alone in a relationship. Conclusions: The training of care professionals regarding the unique needs of spouse carers of people with dementia needs improvement, with education, in particular, focusing on their need to be considered as a person separate from being a carer and on the significance of the couple's relationship for their mutual well-being.
Background: Studies reported the relationship between behavioural and psychological symptoms of dementia (BPSD), cognitive function, caregiver burden, and therapeutic effects. However, the causal relationship between BPSD in community-dwelling patients with Alzheimer’s disease (AD) and caregiver burden is yet to be established. This study aimed to classify BPSD in patients with AD and identify the relationship between BPSD and the factors affecting family caregiver burden. Methods: Path analysis was conducted at a neurology outpatient clinic of a tertiary general hospital in South Korea. The medical records of 170 patients, aged ≥50 years, diagnosed with or suspected for AD were retrospectively reviewed. We investigated cognitive function (Korean version of the Mini-Mental-State Exam), dementia stages (Korean version of the Expanded Clinical Dementia Rating scale), depression (Short-form Geriatric Depression Scale-Korea), activities of daily living (ADL; Korean version of the Barthel Activities of Daily Living index), instrumental activities of daily living (IADL; Seoul-Instrumental Activities of Daily Living), and BPSD and caregiver burden (Korean Neuropsychiatric Inventory). Considering the characteristic features of BPSD with various symptoms, BPSD was classified using factor analysis. Factor extraction was performed using principal component analysis, followed by Varimax factor rotation. Results: Mean total BPSD score was 17.66 ± 20.67, and the mean score for family caregiver burden was 9.65 ± 11.12. Symptom cluster-1 (hyperactivity symptoms) included disinhibition, irritability, and agitation/aggression. Symptom cluster-2 (psychosis symptoms) included hallucinations, anxiety, elation/euphoria, delusions, and depression/dysphoria. Symptom cluster-3 (physical behaviour symptoms) included appetite and eating abnormalities, apathy/indifference, aberrant motor behaviour, sleep, and night-time behaviour disturbances. Dementia stages, ADL, and IADL had indirect effects on family caregiver burden through hyperactivity, psychosis, and physical behaviour symptoms, indicating that BPSD exerted a complete mediating effect. Conclusions: Unlike previous studies, we classified BPSD symptoms into similar symptom clusters to evaluate its effect on caregiver burden, rather than collectively investigating the 12 symptoms of BPSD. As the dementia stage worsens, symptom clusters in BPSD serve as a medium between ADL and IADL degradation and for the increase in caregivers’ burden. The development and implementation of therapeutic, nursing interventions, and policies focusing on dementia stages, ADL, and IADL, delaying and preventing BPSD can alleviate family caregivers’ burden.
Introduction: The dementia disease affects both the family caregivers’ health and social and psychological well-being. The aim of this review was to identify and describe the needs of family caregivers living with a person with dementia at home. Method: The literature review, conducted using the matrix method, was also inspired by Thomas and Harden’s thematic synthesis. Results: Three themes were identified: (1) the family caregiver’s new roles and relationships; (2) caregiver burdens; and (3) the caregiver’s need for information and support. Conclusion: When family caregivers gradually lose their reciprocal relationship with the person with dementia, and sometimes also with family and friends, the need for other kinds of social contact arises e.g. with others in a similar situation. They also need to have some respite to provide room to pursue their own interests and take care of their own health. Also, a high level of individually tailored information is needed.
Background: One in four Baby Boomers fills the informal caregiver role in the United States. The objectives of this study were to estimate the prevalence of Baby Boomers who are informal caregivers for people living with dementia and compare their physical and mental health status to caregivers for persons with conditions other than dementia using 2015–2018 Behavioral Risk Factor Surveillance System data (N = 10,602). Methods: We identified caregiving status (assisting a family member/friend with a long-term illness or disability in the past month, managing personal care, and not caring for a child/grandchild) and whether the care recipient’s major health condition was dementia. We calculated weighted estimates and used chi-square tests and log-binomial regression for comparisons of selected characteristics. Results: Among Baby Boomer caregivers, 15.4% were caring for someone with dementia. Dementia caregivers were more likely to be female, caring for a parent/parent-in-law, and providing care longer than caregivers for persons without dementia. After adjusting for sociodemographic and caregiving characteristics, the prevalence of fair/poor health, frequent mental distress, and chronic conditions were similar across types of caregivers. Conclusions: Although no differences in caregiver’s physical and mental health by care recipient’s dementia status were found, we should underscore the importance of maintaining Baby Boomer caregivers’ health and well-being.
Background: Illness blogs have been used by many individuals to describe their experiences, share knowledge, and gather support. The purpose of this study was to identify needs, concerns, and advice from the blogs of caregivers caring for a person with dementia at the end of life (EOL). Design: A qualitative thematic analysis was performed of 192 blog postings from six dementia family caregivers during the EOL. A Google search using a systematic identification method was followed. Caregivers were females caring for mothers (n = 5) and husbands (n = 1). Results: Themes varied by EOL stage within the contextual environment of Grief/Loss, Family, and Spirituality. Pre-death themes were Care Transitions and Quality; dying were Physical and Emotional Aspects; and post-death were Relief and Remembering. Four additional themes transitioned across stages: Decision-Making, Health Care Providers, Advice, and Caregiver Support. Conclusions: Findings suggest caregiver needs, concerns, and advice vary by EOL stage. Implications for tailored interventions should be considered.
Background: Depression among family caregivers is becoming an increasingly important issue due to a growing elderly population. This study aimed to examine the association of living with a patient with dementia and family caregivers’ depressive symptoms, among Korean adults. Methods: This study used the data of 371,287 participants after excluding those who indicated having dementia themselves from the Korea Community Health Survey of 2018–2019. Depressive symptoms were measured using the Patient Health Questionnaire-9. Data were analyzed using multiple logistic regression. Results: The rates of spouse caregivers having depressive symptoms were 9.4% and 10.8% among men and women, respectively. The odds ratio for risk of depressive symptoms among male and female spouse caregivers in comparison to non-caregivers was 2.65 and 2.28, respectively. In the subgroup analysis, the highest income group was associated with risk of depressive symptoms, with an odds ratio of 4.28 for men, and 3.02 for women. Conclusion: Having a patient with dementia in the family was significantly associated with family caregivers’ depressive symptoms. In particular, when the patient with dementia was a spouse, both women and men were likely to have depressive symptoms. To reduce the burden of caregivers, we need management policies and interventions for family caregivers.
Background: In China, family caregivers play a major role in caring for people living with Alzheimer's disease (PLWAD), but little is known about the burden this creates. Objective: This study aimed to investigate the burden among family caregivers of PLWAD and the factors influenced it. Methods: Family caregivers of PLWAD were recruited from a hospital in China from January 2018 to July 2018. All data were collected online using the Chinese version of the Zarit Burden Interview (ZBI), and the participants' sociodemographic and caregiving details were obtained. T-tests and Kruskal-Wallis H (K) tests were used to compare ZBI scores between groups. Factors related to the caregiver psychological burden were analyzed using multiple linear regression analysis. Results: A total of 300 participants were assessed, of which 213 (71.00%) were female. More than half of the caregivers were the patient's daughter (51.0%, n = 153). The average ZBI score of the caregivers was 43.05 (13.42). The level of burden was influenced by age, the relationship of the caregiver to the patient, the severity of AD, the caregiver's retirement status, the income level of the caregiver, and the caring time. Regression analysis showed that retired caregivers were more likely to have higher levels of burden and that burden increased with AD severity. Conclusion: Most family caregivers of PLWAD have a considerable caregiver psychological burden. The findings increase the understanding of factors that influence family caregiver burden, and pave the way for potential interventions, such as social support and caregiver empowerment, to reduce their burden.
Introduction: The objective of this study was to examine the caregiving burden and identify the predictors of burden among family caregivers of patients with Alzheimer’s disease. Materials and Method: The sample consisted of 154 family caregivers of community-dwelling Alzheimer patients. Zarit Burden Inventory was used to measure caregiver burden. Depending on the total score, the level of burden is classified as absent to little burden (0 to ≤20), mild to moderate burden (21 to 40), moderate to severe burden (41 to 60), and very severe burden (≥61). The cutoff point for the clinical depression was taken as 24. Results: The caregivers were mainly women (78.6%), the patient’s daughters (56.5%), living with the patient (79.1%), and they were not receiving any support from other family members for patient care (54.5%). The average time spent on caregiving tasks was 4.8 hours a day. The mean Zarit Burden Inventory score was 22.4. The burden scores of 39.6% of the caregivers were significant for clinical depression. The most pronounced predictors of higher burden were the absence of someone supporting the care, social isolation, the length of time spent daily for caregiving, and the patient’s age, comorbidities, and functional impairment in daily activities. Receiving psychological counselling was a protective factor against the development of burden. Conclusion: The results suggest that burden is high among the caregivers of patients with Alzheimer’s disease. Strategies should be developed to support family members in countries such as Turkey, where the care is undertaken by informal caregivers.
Objectives: Despite evidence of negative aspects of the work–caregiving interface (e.g. work–family conflict) among family caregivers of people with dementia (PWD), little is known about the positive aspects (e.g. enrichment). We examined antecedents and outcomes of family-to-work enrichment (FWE) and work-to-family enrichment (WFE) among working family caregivers of PWD. In terms of antecedents, we investigated whether factors that alleviated work–family conflict increased enrichment. Method: We conducted a 3-wave 6-month-interval longitudinal online survey of Japanese working family caregivers of PWD (N = 747). We examined the mediational effects of WFE and FWE on associations between participants' work resources (job control, supervisor support, co-worker support, and organizational support) and caregiving support and their well-being (psychological distress and quality of life). We also examined the moderating effect of caregiving self-efficacy on the relationships between caregiving support/caregiving demands and FWE. Results: Our longitudinal analysis confirmed supervisor support had a positive effect on WFE. FWE had no significant longitudinal mediating effect on the association between caregiving support and well-being, and self-efficacy had no longitudinal moderating effect on FWE. Discussion: Supervisor support is important for WFE, but greater enrichment does not necessarily improve family caregiver well-being. Caregiving experience (i.e. caregiving demands and caregiving support) has little effect on the work–caregiving interface. Policy makers should focus on supporting companies to create family-friendly work environments. More research is needed on factors that increase FWE and moderate the relationship between enrichment and working family caregivers' well-being.
Background: In Alzheimer’s disease, two fundamental aspects become important for caregivers: ambiguity and ambivalence. Thus, anticipatory grief is considered an active psychological process that is very different from the mere anticipation of death. The present study aims to determine which characteristics of family caregivers of people with dementia, such as age, gender, educational level, relationship with the person with dementia, years with dementia or years as a caregiver, are related to the presence of anticipatory grief. Methods: A cross-sectional design was employed. The sample consisted of a total of 129 subjects who cared for a family member with dementia. A sociodemographic data sheet and a battery of tests measure the presence of anticipatory grief, caregiver burden and/or psychopathology. Results: The results obtained allowed us to confirm some of the hypotheses regarding the anticipatory grief construct, the importance of the care time factor, in years and per day, as well as the relevance of the previous demographic and psychopathological profile (being female, spouse function and possible depressive symptomatology). Likewise, from the prediction analyzes performed, it seems that these variables can predict anticipatory grief. Conclusion: These results propose interesting opportunities to formulate care proposals to professionals and family caregivers in relation to care tasks and caregiver skills.
Background and Objectives: African-American family caregivers may have insufficient knowledge to make informed end-of-life (EOL) decisions for relatives with dementias. Advance Care Treatment Plan (ACT-Plan) is a community-based education intervention to enhance knowledge of dementia and associated EOL medical treatments, self-efficacy, intentions, and behavior (written EOL care plan). This study evaluated efficacy of the intervention compared to attention control. Research Design and Methods: In a theoretically based, 2-group, cluster randomized controlled trial, 4 similar Midwestern urban megachurches were randomized to experimental or control conditions. Each church recruited African-American caregivers, enrolling concurrent waves of 5 to 9 participants in 4 weekly 1-hour sessions (358 total: ACT-Plan n = 173, control n = 185). Dementia, cardiopulmonary resuscitation (CPR), mechanical ventilation (MV), and tube feeding (TF) treatments were discussed in ACT-Plan classes. Participants completed assessments before the initial class, after the final class (week 4), and at week 20. Repeated measures models were used to test the intervention effect on changes in outcomes across time, adjusting for covariates as needed. Results: Knowledge of CPR, MV, TF, and self-efficacy to make EOL treatment decisions increased significantly more in the ACT-Plan group at weeks 4 and 20. Knowledge of dementia also increased more in the ACT-Plan group at both points, reaching statistical significance only at week 20. Intentions to make EOL treatment decisions and actually an advance care plan were similar between treatment arms. Discussion and Implications: Findings demonstrate promise for ACT-Plan to increase informed EOL treatment decisions for African American caregivers of individuals with dementias.
Background: The rising older population in Japan is associated with a rise in cases of dementia. Support for the increased number of family caregivers of people living with dementia is crucial, as caring may negatively affect a family caregiver's health. This study seeks to evaluate the feasibility and applicability of a recently developed Japanese version of START (STrAtegies for RelaTives). START is a psychosocial coping intervention program developed in the United Kingdom that has been shown to improve caregivers' mood and quality of life in a randomized controlled trial. Method: We made changes to START (e.g., idioms, linguistic nuance, and providing care insurance information suited for Japan) to make it culturally appropriate. Fourteen Japanese female family caregivers of relatives with mild dementia (n = 10) or mild cognitive impairment (n = 4) were referred to the study, but six were excluded owing to illness and busyness. This single-arm study had a before–after trial evaluating psychological outcomes including depression, anxiety, quality of life, and subjective care burden. Results: The acceptance retention and satisfaction rate suggest the feasibility and acceptability of the START program; 8/14 (>55%) eligible, prospective participants consented and were included in this study, all (8/8) of whom completed all START sessions. The mean program satisfaction score was 30.25 (standard deviation = 2.25) out of a potential 32. Conclusion: The results suggest that it is feasible and acceptable to deliver START in Japanese and based on the results of analysis using a linear mixed model, there is initial indication that the intervention improved family caregivers' quality of life, depressive symptoms, and care burden.
Background: To promote resilience among caregivers for persons living with dementia (PLWDs), we examine how formal and informal supports are linked to caregiving gains, and whether gender moderates the association between supports and gains. Method: Using the National Health and Aging Trends Study and associated National Study of Caregiving, sources of informal (emotional support, practical support, and help with the PLWD) and formal support (respite care, training program, support group) are considered as predictors of caregiving gains, with gender as a moderator of these associations. The sample included 707 caregivers for 502 PLWDs. Results: Greater caregiving gains were significantly associated with emotional support from friends/family (β = 0.14, SE = 0.09, p =.03). Furthermore, attending a caregiver training program was only associated with increased caregiving gains among men (β = 0.11, SE = 0.08, p =.02). Conclusion: Emotional support from family/friends appears particularly consequential for caregiving gains, and male caregivers may benefit most from programs that emphasize skill building.
The COVID-19 pandemic and subsequent local, regional, and national lockdowns have led to significant disruption to health and social care services. For people with dementia and their family carers this is problematic. People with dementia rely upon timely and responsive services to live well. The abrupt closure and reduction of many health and community support services arising from the pandemic is of concern. Our two studies explored the impact of COVID-19 on the life quality of people with dementia and their carers. The purpose of this document is to share these findings and provide key messages for services and commissioners. The key messages have been developed in conjunction with people with dementia, their carers and researchers. The Time for Dementia (TfD) study followed a group of 245 family carers during COVID lockdown who provided information on their quality of life and other factors affecting wellbeing before and during the pandemic. In-depth interviews about the impact of the pandemic on their quality of life were also undertaken with 16 carers. The DETERMIND-C19 study compared information collected from 93 people newly diagnosed with dementia and 113 carers before the pandemic to that gathered during the pandemic. Changes in people’s mental, physical and social well-being were explored as well as their use of services over this time period. In-depth interviews with 21 people with dementia and 42 carers were undertaken in order to better understand experiences and quality of life during the pandemic.
Purpose: Informal care constitutes an important part of the total care for people with dementia. Therefore, the impact of the syndrome on their caregivers as well as that of health and social care services for people with dementia should be considered. This study investigated the convergent and clinical validity of the CarerQol instrument, which measures and values the impact of providing informal care, in a multi-country sample of caregivers for people with dementia.; Methods: Cross-sectional data from a sample of 451 respondents in eight European countries, collected by the Actifcare project, were evaluated. Convergent validity was analysed with Spearman's correlation coefficients and multivariate correlations between the CarerQol-7D utility score and dimension scores, and other similar quality of life measures such as CarerQol-VAS, ICECAP-O, and EQ-5D. Clinical validity was evaluated by bivariate and multivariate analyses of the degree to which the CarerQol instrument can differentiate between characteristics of caregivers, care receivers and caregiving situation. Country dummies were added to test CarerQol score differences between countries.; Results: The mean CarerQol utility score was 77.6 and varied across countries from 74.3 (Italy) to 82.3 (Norway). The scores showed moderate to strong positive correlations with the CarerQol-VAS, ICECAP-O, and EQ-5D health problems score of the caregiver. Multivariate regression analysis showed that various characteristics of the caregiver, care receiver and caregiving situation were associated with caregiver outcomes, but there was no evidence of a country-level effect.; Conclusion: This study demonstrates the convergent and clinical validity of the CarerQol instrument to evaluate the impact of providing informal care for people with dementia.
The aim of this study was to identify the differences in quality of life (QoL) and well-being between working and nonworking dementia carers and the relative contribution of psychological characteristics, caregiving experience, and social support. Multiple regressions modeled the contribution of working status, caregiver experiences, and psychological and social resources to carer QoL (EQ-5D) and well-being (WHO-5). After controlling for age, gender, carer–dyad relationship, and severity of dementia, working status contributed significant variance to EQ-5D (2%) but not to WHO-5 scores. Independent of working status, higher self-esteem and reduced stress contributed to variance in both models. Self-efficacy, social support, and positive perceptions of caregiving additionally contributed to higher WHO-5 scores. Working status associated with higher EQ-5D QoL; this may reflect the sustained sense of independence associated with supported work opportunities for carers. Outside of working status, the findings support the importance of psychological and social factors as targets to improved mental health for dementia carers.
Background Caring for a family member with dementia puts caregivers at risk for depressive symptoms. Yet, interventions with promising effects on caregiver depressive symptoms are not well documented. Aims This review aimed to examine the quality and effectiveness of interventions to reduce depressive symptoms reported by caregivers of people with dementia. Design A systematic review and meta-analysis of nonpharmacological intervention trials was conducted. Methods The electronic databases searched included MEDLINE, CINAHL, and PsycINFO to find randomized controlled trials published between 2007 and 2017. A total of 31 randomized controlled trials were included in the meta-analysis. Results Cognitive-behavioral therapy (838 participants) showed a large, significant effect (standardized mean difference = -0.905; 95% CI = (-1.622, -0.187); p = 0.013) and mindfulness interventions (186 participants) showed moderate, significant effects (standardized mean difference = -0.578; 95% CI = (-0.881, -0.275); p < 0.001) on decreasing caregiver depressive symptoms, while psychoeducational interventions demonstrated small but significant effects (standardized mean difference = -0.244; 95% CI = (-0.395, -0.092); p = 0.002). Emotional support, cognitive rehabilitation, and multicomponent interventions showed less than small or nonsignificant effects related to depressive symptoms among caregivers. Conclusion Cognitive-behavioral therapy interventions, which focus on diminishing negative thoughts and increasing positive activities, can effectively decrease depressive symptoms for caregivers of individuals with dementia. Future research is recommended to assess the long-term effectiveness of cognitive-behavioral therapy in this population.
Introduction Care of persons living with chronic conditions rests heavily on women within the context of the family. Research demonstrates that women experience more caregiving strain compared to men, yet less is known about the differences in experiences between women carers: namely, wives and daughters. Objective The purpose of this study was to examine and compare the experiences of wife and daughter carers of older adults living with Alzheimer disease and related dementias, plus at least two other chronic conditions. Methods Using qualitative description with Wuest's feminist caring theory of precarious ordering as an analytic framework, interview transcripts of women carer participants who were from the control group of a larger multi-site mixed methods study evaluating the web-based intervention My Tools 4 Care were analyzed. Findings Both wives and daughters experienced daily struggles, altered prospects, and ambivalent feelings around their caring role. Negotiating the role of professional carer was an important part of balancing caring demands and anticipating the future, and women took an active role in trying to harness caring resources. Findings indicated wives and daughters were generally similar in how they described their caregiving, although daughters reported more shared caring and decision-making, and needed to balance paid employment with caregiving. Conclusion Wives and daughters face similar challenges caring for persons with a dementia and multiple chronic conditions, and actively engage in strategies to manage caring demands. The findings illuminate the importance of accessible, appropriate support from professional carers/health care providers, and suggest that assistance navigating such supports would benefit women carers.
Aim: To validate the Croatian version of the Zarit Burden Interview (ZBI) and to investigate the predictors of perceived burden.; Methods: This cross-sectional study involved 131 dyads of one informal caregiver family member and one patient with dementia visiting primary care practices (Health Care Center Zagreb-West; 10/2017-9/2018). Patient-related data were collected with the Mini-Mental-State-Examination, Barthel-index, and Neuropsychiatric-Inventory-Questionnaire (NPI-Q); caregiver-related data with the ZBI, and general information on caregivers and patients with a structured questionnaire. Principal-axis-factoring with varimax-rotation was used for factor analysis.; Results: The caregivers' mean age was 62.1±13 years. They were mostly women (67.9%) and patients' children (51.1%). Four dimensions of ZBI corresponding to personal strain, frustration, embarrassment, and guilt were assessed and explained 56% variance of burden. Internal consistency of ZBI (α=0.87) and its dimensions (α1=0.88, α2=0.83, α3=0.72, α4=0.75) was good. Stronger cognitive and functional impairment of patients was associated only with personal strain, whereas more pronounced neuropsychiatric symptoms and the need for daily care were associated with more dimensions. Longer caregiver education suppressed embarrassment and promoted guilt. Guilt was higher in younger caregivers, caregivers of female patients, patients' children, and non-retired caregivers. In multivariate analysis significant predictors of higher overall burden were male sex of the patient, higher NPI-Q, the need for daily-care services, shorter duration of caregiving, non-spouse relationship, higher number of hours caring per-week, and anxious-depressive symptoms in a caregiver.; Conclusion: The Croatian version of ZBI is reliable and valid. Our data confirm that ZBI is a multidimensional construct. Caregivers may benefit from individually tailored interventions.
Purpose: The aim of this study was to investigate the feasibility and preliminary efficacy of a modified mindfulness-based stress reduction (MBSR) program and mindfulness-based cognitive therapy (MBCT) program for reducing the stress, depressive symptoms, and subjective burden of family caregivers of people with dementia (PWD). Methods: A prospective, parallel-group, randomized controlled trial design was adopted. Fifty-seven participants were recruited from the community and randomized into either the modified MBSR group (n = 27) or modified MBCT group (n = 26), receiving seven face-to-face intervention sessions for more than 16 weeks. Various psychological outcomes were measured at baseline (T0), immediately after intervention (T1), and at the 3-month follow-up (T2). Results: Both interventions were found to be feasible in view of the high attendance (more than 70.0%) and low attrition (3.8%) rates. The mixed analysis of variance (ANOVA) results showed positive within-group effects on perceived stress (p =.030, Cohen's d = 0.54), depressive symptoms (p =.002, Cohen's d = 0.77), and subjective caregiver burden (p <.001, Cohen's d = 1.12) in both interventions across the time points, whereas the modified MBCT had a larger effect on stress reduction, compared with the modified MBSR (p =.019). Conclusion: Both the modified MBSR and MBCT are acceptable to family caregivers of PWD. Their preliminary effects were improvements in stress, depressive symptoms, and subjective burden. The modified MBCT may be more suitable for caregivers of PWD than the MBSR. A future clinical trial is needed to confirm their effectiveness in improving the psychological well-being of caregivers of PWD.
Introduction: Alzheimer's disease (AD) caregivers resilience involves the interaction between different risk and protective factors. Context of care, objective stressors, perceived stressors caregiver assessment, mediators factors and consequences of care were associated with resilience. We have developed a more integrated and operational conceptual model of resilience and care than previous models in our sociocultural environment. Purpose: To assess the resilience of caregivers of people with AD and the related factors grouped according to an established operational conceptual model of Alzheimer's caregivers stress. Patients and Methods: A total of 120 primary informal caregivers of AD persons in Badajoz (Spain) were included in a cross-sectional design. The following variables have been measured on AD persons and caregivers: socio-demographic data, dependency level, cognitive decline, neuropsychiatric and behavioral symptoms, anxiety, depression, severity of somatic symptoms, level of burden, self-esteem, coping, social support, health-related quality of life (HRQOL) and resilience. Results: Most of the caregivers reported symptoms of anxiety (63.3%) and depression (62.5%). We found out higher levels of resilience in caregivers with lower dependence caring (p=0.004). Higher resilience levels of caregivers were related to minor depressive (p=0.006) and anxiety symptoms (p=0.000), and higher HRQOL (p=0.000). Coping dimension mostly used was problem-based strategies such as active coping, positive reinterpretation and acceptance (p= 0.000). Conclusion: Those caregivers reporting higher levels of resilience exhibited moderate to intense indicators of burden, fewer symptoms of depression and anxiety and fewer somatic symptoms. They also used adequate problem-focused coping strategies, showed higher levels of HRQOL and demonstrated an appropriate perception of social support. Despite the fact that the characteristics relating to the care context and to social support exert an undeniable influence on caregiver resilience, it would appear that the caregiver's own intra-psychic resources reveal stronger correlations. Relevance for Clinical Practice: The early and accurate identification of caregivers with lower levels of resilience could enable the implementation of vital psychological and educative support interventions to help caregivers to improve their well-being.
Background: The NHS dementia strategy identifies patient and carer information and support (PCIS) as a core component of gold-standard dementia care. This is the first systematic review of PCIS, performed to analyse the literature and evidence for these interventions.; Aims: To systematically review literature evaluating the effectiveness of the provision of PCIS for people with dementia and their informal carers, in inpatient and outpatient settings.; Methods: Searches of four online biomedical databases, accessed in September 2018. Studies were selected if they were: relating to people with dementia or their informal carers, based in inpatient or outpatient settings, published in English-language peer-reviewed journals no earlier than the year 2000 and assessed dementia-related information or social support interventions, by measuring qualitative or quantitative carer or patient-reported outcomes. Standardised data extraction and quality appraisal forms were used.; Results: 7 of 43 full-text papers analysed were eligible for analysis. 3 papers were different arms of one original study. Trends were present in the quantitative results towards reduced patient and carer depression and anxiety and the themes in the qualitative analysis were in favour of the intervention.; Conclusions: The studies analysed were too heterogeneous in design, population and outcomes measured to make a conclusive opinion about the efficacy of these interventions. It is surprising that for such a common condition, a gold-standard evidence-based intervention and standardised delivery for provision of PCIS for people living with dementia in the UK does not exist. Further research is therefore vital.
BACKGROUND: Caregiver stress is harmful to the health of both caregivers and people living with Alzheimer's disease or other dementias. The present study was conducted to assess stress and its predictors of people living with Alzheimer's disease or other dementias' caregivers. METHODS: The present descriptive, analytical, cross-sectional study was conducted in December 2017-June 2018 in Isfahan, Iran. Data were collected by interviewing 99 caregivers had at least 6 months of experience caring for a patient diagnosed with Alzheimer's disease, through questionnaires developed by the researcher. A convenience sample (easy access) of caregivers was recruited from calling the home of formally diagnosed with Alzheimer's patient, that have registered in educational hospitals affiliated to Isfahan University of Medical Sciences and psychiatrists' office both paid caregivers (formal) and unpaid caregivers (family). All caregivers provided informed consent. The type and severity of the relationship between the dependent (stress) and independent variable were assessed using Pearson's and Spearman's correlation coefficients, the independent t-test, and the multivariate regression analysis. RESULTS: The caregivers' mean stress score was 25.4 +/- 10.9 (range: 4-54). About 80% of the caregivers were female. Age and stress score was correlated (P = 0.004), the mean stress score was significantly higher in female caregivers (P = 0.04), informal caregivers (P < 0.001), and significantly lower in the caregivers with previous experience of caring for Alzheimer's patients (P = 0.02) or those introduced by service companies (P = 0.005). Variables including the family relationship with the patient (P = 0.01), kind of caregiving (P = 0.03), and previous experience of caring for Alzheimer's patients (P = 0.04) were stronger predictors of the stress score. CONCLUSION: Stress is a challenge in promoting mental health among dementia caregivers. Providing social support with an emphasis on physical, mental, and social health is mandatory, especially for female and family caregivers, to promote stress management, mental health in this group, and enable optimal and purposeful care.
Background Around 50 million people worldwide are diagnosed with dementia and this number is due to triple by 2050. The majority of persons with dementia receive care and support from their family, friends or neighbours, who are generally known as informal caregivers. These might experience symptoms of depression and anxiety as a consequence of caregiving activities. Due to the different welfare system across European countries, this study aimed to investigate factors associated with self-reported depression and anxiety among informal dementia caregivers both in Sweden and Italy, to ultimately improve their health and well-being. Methods This comparative cross-sectional study used baseline data from the Italian UP-TECH (n = 317) and the Swedish TECH@HOME (n = 89) studies. Main outcome variables were the severity of self-reported anxiety and depression symptoms, as measured by the Hospital Anxiety and Depression Scale (HADS). HADS scores were investigated using descriptive and bivariate statistics to compare means and standard deviations. Linear regressions were used to test for associations between potential factors and self-reported symptoms of depression and anxiety. Results Italian informal caregivers reported more severe symptoms of depression and anxiety than Swedish caregivers. In Italy, a higher number of hours of caregiving was associated with anxiety symptoms (beta = - 1.205; p = 0.029), being 40-54 years-old with depression symptoms (beta = - 1.739; p = 0.003), and being female with symptoms of both depression (beta = - 1.793; p < 0.001) and anxiety (beta = 1.474; p = 0.005). In Sweden, a higher number of hours of caregiving and being < 39 years-old were associated with depression symptoms (beta = 0.286; p < 0.000; beta = 3.945; p = 0.014) and a higher number of hours of caregiving, the lack of additional informal caregivers and dementia severity were associated with anxiety symptoms (beta = 0.164; p = 0.010; beta = - 1.133; p = 0.033; beta = - 1.181; p = 0.031). Conclusion Multiple factors are associated with self-reported symptoms of depression and anxiety among informal caregivers in Sweden and Italy. Factors found in this study partly differ between the two countries, suggesting the important role of cultural and social factors affecting the experience of caregiving. A deeper knowledge of these factors may increase the knowledge on potential protective and risk factors, provide information to policymakers and ultimately improve the psychological well-being of informal caregivers to people with dementia across Europe.
Rationale: Evidence-based reablement programs for people with dementia and their caregivers are not routinely implemented in practice. These programs have been shown to be effective in delaying functional decline and improving caregiver wellbeing. Yet, little is known about the experiences of those participating in such programs. Aim: To describe experiences and outcomes of participating in a dementia reablement program, the Care of Persons with dementia in their Environments (COPE), in Australia. Methods: Purposeful sampling was used and semi-structured interviews were completed with people with dementia and their caregivers who received the COPE program in two different states in Australia. The interviews explored the participants' experiences with the program as well as how they are managing after program completion. Thematic analysis was used to identify themes from the interviews. A Likert scale was used to rate the value of the program. Results: Ten dyads (person with dementia and/or their caregiver) were interviewed. Participation in the program was rated (mostly) very valuable. The ongoing collaboration between the therapist and caregiver was considered empowering. The program promoted participation in everyday activities for the person with dementia and appeared to give a 'second chance' to remain in their own homes and communities. Conclusion: Participation in reablement programs (such as the COPE program) has the potential to re-engage people with dementia in meaningful roles and activities in their chosen environments. A therapeutic relationship and individualized intervention approaches tailored to the participants' needs and readiness foster positive experiences and confidence.
Objectives Dementia is a common disease in the elderly and imposes a heavy care burden on family members. Many factors can be associated with care burden. One of these factors can be the caregivers' Spiritual Well-Being (SWB). This study aimed to examine the relationship between SWB and care burden in caregivers of dementia patients. Methods This correlational study was conducted on 60 caregivers (75% female and 25% male with a mean age of 47 years) of patients with dementia referred to Rasoul-e-Akram Hospital and Brain & Cognitive Clinics in Tehran, Iran in 2019. Samples were selected using purposive and convenience sampling methods. The caregivers were evaluated by using the Caregiver Burden Questionnaire and SWB Scale and a socio-demographic checklist. Data were analyzed by using Pearson's correlation coefficient and multiple linear regression analysis in SPSS software at the significance level of P<0.05. Results About 16.7% of caregivers had little care burden, 35% had moderate to severe burden, 25% moderate burden and 23.3% severe burden. Moreover, 1.7% had poor SWB, 66.7% moderate SWB and 31.7% high SWB. The care burden had a negative and non-significant relationship with religious dimension of SWB (r=-0.089, P=0.505), and a negative and significant relationship with existential dimension of SWB (r=-0.283, P=0.032). Linear regression model revealed that existential dimension had a relationship with care burden (beta=-0.298, P=0.023) and explained 9% of variation in care burden. Conclusion SWB plays an important role in improving the overall health of caregivers. in addition to being one of determinant of care burden, it acts as a factor in enhancing other aspects of health. Overall, caregiving is a stressful job; being aware of positive topics such as spirituality helps therapists provide strategies for caregivers to reduce their stress and care burden.
Objectives: There is currently little known about why people decline to participate in dyadic, psychosocial dementia research. This interview study aims to explore the reasons why people declined to participate in the Valuing Active Life in Dementia research trial. Methods: Ten family carers of people with dementia, who were part of a dyad that had declined to take part in the randomised controlled trial, participated in qualitative telephone interviews to explore their reasons for declining. Inductive thematic analysis was used to identify themes. Findings: Two themes with related sub-themes were identified: (1) Protectiveness - protecting the person with dementia, themselves as carers and their current lifestyle; (2) 'It's not for us' - the time commitment, and the possible unsuitability of the intervention, was seen to outweigh the perceived benefit of taking part. People with dementia were not always involved in the decision-making process, with carers stating the decision not to participate was made in the usual way as all their decisions. No apparent differences between the spousal and the child carers were apparent in the small sample. Conclusion: Recruitment to randomised controlled trials can be considered difficult or unfair because some participants will miss out on the desired intervention. However, this study shows that concern about the time and inconvenience of being involved in the trial can put people off research participation. Identifying possible reasons for declining research participation contributes to the design of future trials and recruitment strategies, so that the potential benefit is considered relative to the time and effort involved. Offering research opportunities to people with dementia and their families at the right stage of the dementia trajectory for their needs, facilitating personalised recruitment strategies with finely tailored researcher communication skills should help maximise recruitment, reduce attrition and deliver a more successful trial.
Objectives: To examine racial differences in respite utilization among a nationally representative sample of caregivers for persons living with dementia (PLwD). A secondary aim identified factors associated with respite utilization. Methods: Using data from the 2015 National Health and Aging Trends Study and National Study of Caregiving, we conducted binary logistic regression to examine racial difference in respite use among Black and white caregivers (n = 750). Results: 22% of the sample used respite for PLwD. Black dementia caregivers were 69% less likely (odds ratio: .31, p = .001) to use respite compared to white caregivers. Other factors associated with utilization included education, receiving help with caregiving, and providing care for more self-care/mobility tasks or to a Medicaid-enrollee.Discussion: Findings suggest that Black dementia caregivers may be at risk for less frequent use of respite and highlight the need to identify factors that promote respite use.
Long-term care for older people with dementia can adversely impact a family caregiver's life. A decrease in their quality of life may compromise the quality of care they provide to older people and their own quality of life. The samples include 76 family caregivers of older people with dementia in Thailand. Six questionnaires and the EuroQoL Five Dimensions Questionnaire were used in data collection. Descriptive and inferential statistics were used in data analysis. The findings revealed that quality of life of family caregivers was at a high level. Experiences of close relationships between care dyads and perceived social support were positively related to family caregiver's quality of life, whereas perceived stress and burden were negatively related. Perceived social support and experiences of close relationships might be predictors of family caregiver's quality of life. High quality of life levels among Thai family caregivers of older people with dementia were influenced by high perceived social support and high experiences of close relationships. An intervention focusing on modifying such predicting factors may effectively help maintain quality of life of these family caregivers.
No studies have included the experiences and needs of informal caregivers who are deaf, use American Sign Language (ASL), and care for a loved one with Alzheimer's disease or related dementias (ADRD). The CDC's BRFSS Caregiver Module and PROMIS-Deaf Profile measures were administered via an online bilingual English/ASL platform between October 2019 and March 2020. Out of 194 deaf adult signers who completed an online survey, 42 respondents (mean age = 66; SD = 12; 74% White) endorsed informally caring for someone with a medical condition. In this survey subsample of informal caregivers, more years of education was significantly associated with higher generic quality of life and higher deaf-specific quality of life. A smaller subset of informal deaf informal caregivers who were currently taking care of loved ones with ADRD were then invited to participate in a semi-structured interview. Among the 22 informal caregivers who were interviewed, there was a strong agreement among the participants who felt that their quality of life as informal caregivers was worse than hearing informal caregivers who took care of loved ones with ADRD. Findings highlight the importance of a call to action to address the needs of deaf informal ADRD caregivers.
Background and aims: Globally, two thirds of people with dementia are cared for by their families or friends. Family caregivers' coping strategies of managing the caregiving burden of dementia have been studied widely in western literature. However, few attempts have been made to explore the experience of family caregivers' coping strategies in China. The aim of this study was to explore the family caregivers' coping strategies when caring for people with dementia in one city in the province of Shandong, China. Methods: Fourteen family caregivers were individually interviewed, and interpretative phenomenological analysis was used to identify themes within different family members. Results: Four key themes were found: (a) being filial; (b) changing self and self-care; (c) seeking help; and (d) having hope and continuing life. Conclusion: The study illustrates the different strategies developed by family members in order to cope with their new roles when caring for a relative who has dementia. It shows that cultural belief of filial piety plays a large role across these various coping strategies. It highlights how responsibility has been maintained and influenced by the specific sociocultural context. The results provide a useful foundation for developing interventions that support family caregivers cope with the burden of caring in this population.
Background In dementia it is necessary that a family member become an informal caregiver. This labour has social, physical and emotional repercussions on the caregiver's health. The objective was to assesses the impact of the INFOSA-DEM intervention on burden and emotional well-being among caregivers of people with dementia, evaluating the effects at 3 and 6 months. Method We adopted an experimental, non-randomised design with an intervention group and a control group. The intervention group received the intervention and the control group received usual care. The study was carried out in the catchment areas of three centres specialising in the care of people with cognitive impairment in the province of Barcelona. Results At 3 months, there was an improvement with respect to burden in the intervention group with a significant worsening (P< 0.012) in the control group. Similarly, a positive effect on emotional well-being was observed in the intervention group compared with a small negative effect among controls. Conclusions Programs addressed to informal caregivers based on psychoeducational and cognitive-behavioural therapies are effective in improving quality of life and emotional well-being, and in reducing burden, with a positive effect on the quality of care provided at home.
Background: The knowledge about the experience of informal caregivers who provide care to people with moderate to advanced dementia in a domestic home setting is limited. A consequence of long hours of caregiving in addition to dealing with normal challenges of daily living is their experience of a poor quality of life. Some of their experiences may be described in terms of a feeling of powerlessness to make changes during care provision. This feeling may also suggest an experience of moral distress. The aim of this systematic review is to synthesise qualitative evidence relating to these experiences. Methods: This review adopts a narrative synthesis approach. A search will be conducted for studies written in the English language in the bibliographic databases MEDLINE Complete, CINAHL, EMBASE, PsycINFO, Web of Science and Academic Search Complete covering periods from 1984 to present. Included studies will be qualitative or mixed-methods designs. The search terms will be related to dementia and caregivers, and the process will be focused on dementia at the moderate to the advanced stages within the domestic home setting. Reference lists of included papers will also be searched for additional relevant citations. Search terms and strategies will be checked by two independent reviewers. The identification of abstracts and full texts of studies will be done by the author, while the quality and the risk of bias will also be checked by the two independent reviewers. Discussion: Psychological distress is cited as an experience reported within informal caregiving. For the caregiver, it is associated with a negative impact on general health. To date, no synthesis exists on the specific experience of informal caregiving for people with moderate to advanced dementia within the domestic home setting. This review considers that variation of accounts contributes to how the informal caregivers' general experience is explored in future research. This may enable gaps in current knowledge to be highlighted within the wider context of caregiving in the domestic home setting. Systematic review registration This review is registered with PROSPERO.
Aim: Dementia is the major cause of disability among older persons and leading physical and psychological sequelae for both the person living with dementia (PLwD) and their caregivers. The aim of this study was to determine the prevalence of dementia in Malaysia and identify the factors influencing quality of life (QoL) of caregivers of PLwD.; Methods: A nationwide survey was conducted among individuals aged ≥60 years. Cognition was assessed with the Identification and Intervention for Dementia in Elderly Africans (IDEA) tool. QoL of older caregivers was assessed using the Control, Autonomy, Self-Realization and Pleasure (CASP-19) questionnaire.; Results: The prevalence of dementia among older adults aged ≥60 years in Malaysia was found to be 8.5%. The prevalence was found to be higher among females, those with no formal education and those in rural areas in Malaysia. The mean QoL of family caregivers of PLwD was significantly lower than the caregivers of older adults without dementia were (P < 0.001). Multivariable linear regression analysis on the subpopulation of PLwD showed that inability to carry out activities of daily living among PLwD (P = 0.014) and low to fair social support for the caregivers (P < 0.001) were negatively associated with QoL of caregivers of PLwD.; Conclusions: The high prevalence of dementia among older adults in Malaysia emphasizes the need for affirmative action in Malaysia. The functional capacity of the PLwD and social support determines the QoL of caregivers of PLwD in Malaysia. Thus, the community as a whole needs to provide support to PLwD and their caregivers.
• Caregivers' distress relative to their persons' delusions decreased significantly. • Caregivers' distress relative to their persons' anxiety decreased significantly. • Severity of persons' living with dementia delusions decreased significantly. • Severity of persons' living with dementia depression decreased significantly. • Total symptom severity for persons living with dementia decreased significantly.
The purpose of this longitudinal cohort study was to explore the outcomes of persons living with dementia (PLWD) and their caregivers during their first 9 months at the Integrated Memory Care Clinic (IMCC). IMCC advanced practice registered nurses provide dementia care and primary care simultaneously and continuously to PLWD until institutionalization. Changes were examined in caregivers' psychological well-being (perceived stress, depressive symptoms, caregiver burden, and anxiety) and health status and in PLWDs' quality of life and neuropsychiatric symptoms. Data were collected at baseline, then 3 and 6 months post-baseline. Forty-two caregivers completed all 3 assessments. Most variables remained unchanged. Statistically significant improvements in 5 sub-scales of the Neuropsychiatric Inventory were observed: caregivers' distress regarding their PLWDs' delusions and anxiety, and PLWDs' severity of delusions, depression, and total symptom severity. Further testing of the IMCC is required, including in quasi-experimental studies, to determine its efficacy.
Background: It is estimated that 564,000 Canadians are currently living with dementia and there are approximately 486,000 to 1.1 million informal family/friend caregivers. Family/friend caregivers often receive little to no education or training about dementia but are expected to provide ongoing support for a complex condition. Web-based family/friend caregiver interventions may be helpful, but little is known about how best to implement them.; Objective: The objectives of this study were to 1) design and develop a novel education prescription application to help scale and spread web-based dementia education to family/friend caregivers, 2) conduct user testing, and 3) conduct a larger-scale field trial.; Methods: A novel education prescription web-based application was designed and developed. Initial user testing used task completion and the "think aloud" technique with a small sample of representative clinicians who work with people living with dementia and family/friend caregivers. Following iterative incorporation of feedback, a larger field trial was conducted with a convenience sample of clinicians. Account invitations were sent to 55 clinicians and, following a 2-month trial period, surveys were administered to participants including the System Usability Scale and the Net Promoter Score.; Results: During the initial user testing phase, participants (N=7) from representative disciplines easily completed associated tasks, and had very positive feedback with respect to the usability of the application. The System Usability Scale score during this phase was 91.4. Suggestions from feedback were incorporated into the application. During the larger field trial phase, participants (total N=55; activated account n=17; did not activate account n=38) were given access to the iGeriCare education prescription application. During this period, 2 participants created educational prescriptions; a total of 3 educational prescriptions were sent. Survey completers who did not activate their account (n=5) identified that their lack of use was due to time constraints, competing priorities, or forgetting to use the application. Survey completers who activated their account (n=5) identified their lower use was due to lack of time, lack of eligible family/friend caregivers during trial period, and competing priorities due to the COVID-19 pandemic. The System Usability Scale score during this phase was 78.75, and the Net Promoter Score was 50.; Conclusions: Study findings indicate a generally positive response for the usability of a web-based application for clinicians to prescribe dementia education to family/friend caregivers. The dissonance between the promising data and widespread enthusiasm for the design and purpose of the education prescription application found in the initial user testing phase and subsequent lack of significant adoption in the field trial represents both an important lesson for other novel health technologies and a potential area for further investigation. Further research is required to better understand factors associated with implementation of this type of intervention and impact on dissemination of education to family/friend caregivers.
The aim of this pilot intervention study was to assess the effectiveness of selected forms of therapy (massage and relaxation) in reducing the perceived burden and improving the emotional status of caregivers of people with dementia and to determine which form of physical intervention is most effective. The study group was made up of 45 informal caregivers, who were divided into three subgroups (the massage group, relaxation group and control group). The Caregiver Burden Scale (CBS), Beck Depression Inventory (BDI), Berlin Social Support Scale (BSSS) and the Satisfaction with Life Scale (SWLS) were used. In the study group of caregivers, an average level of perceived burden, satisfactory life satisfaction and moderate severity of depressive symptoms were found. Massage led to a reduction in perceived burden and an improvement in mood and well-being of the examined group of caregivers. Group relaxation activities had no effect on the level of burden experienced by the caregivers, but significantly improved their mood. Both massage and relaxation were equally effective in improving the well-being of caregivers. Due to the lower cost of group activities, relaxation activities seem to be more effective and easier to organize, but further studies are necessary.
Caring for a person with dementia can be challenging over the years. To support family carers throughout their entire caregiving career, interventions with a sustained effectivity are needed. A novel 6-week mobile health (mHealth) intervention using the experience sampling method (ESM) showed positive effects on carers' well-being over a period of 2 months after the intervention. In this study, the effects after 6 months of the selfsame intervention were examined to evaluate the sustainability of positive intervention effects. The 6-week mHealth intervention consisted of an experimental group (ESM self-monitoring and personalized feedback), a pseudo-experimental group (ESM self-monitoring without feedback), and a control group (providing regular care without ESM self-monitoring or feedback). Carers' sense of competence, mastery, and psychological complaints (depression, anxiety and perceived stress) were evaluated pre- and post-intervention as well as at two follow-up time points. The present study focuses on the 6-month follow-up data (n = 50). Positive intervention effects on sense of competence, perceived stress, and depressive symptoms were not sustained over 6-month follow-up. The benefits of this mHealth intervention for carers of people living with dementia were not sustained over a long time. Similarly, other psychosocial interventions for carers of people with dementia rarely reported long-lasting effects. In order to sustainably contribute to carers' well-being, researchers and clinicians should continuously ensure flexible adjustment of the intervention and consider additional features such as ad-hoc counseling options and booster sessions. In this regard, mHealth interventions can offer ideally suited and unique opportunities.
Objective: To investigate the impact of a one-day training program on care-givers' confidence and knowledge in managing aspects of dementia care. Design: One-day caregiver training program featuring: 1) an interactive, multi-media format; 2) a companion manual; and 3) a "brain-storming" session at the end of the day that utilized attendees' real-world cases where the use of the DICE (Describe, Investigate, Create, and Evaluate) approach was illustrated "live." Setting: Three different geographical sites in Michigan. Participants: Family (n = 40) and professional (paid; n = 140) caregivers (total n = 180) for people with dementia. Measures: Preand post self-ratings related to confidence in aspects of dementia care management before and directly after the training. Results: Comparing self-ratings pre and post-training, more than 50% of family caregivers showed improvement in confidence post-training on 11 of 12 items with significant improvement in 4 items. Among professionals, more than 50% of caregivers showed improved confidence on 3 of 12 items, with 4 items showing significant improvement. Family caregivers were significantly more likely than professionals to show improved confidence on 6 of 12 items. Conclusions: The number of people with dementia and their family caregivers is large and growing every day with the aging of the population. Living well with dementia is the goal. Current care systems are inadequate and lead to multiple poor outcomes. Innovative solutions like the DICE Approach with delivery methods including a manual and interactive training can put the key components of good dementia care at the fingertips of the people who need it most.
Alzheimer's disease and related dementias (ADRDs) have a significant impact on families. Family nurses are in an ideal position to address the needs of families affected by ADRD. However, to be most effective, family nurses and researchers need culturally appropriate theories to guide practice and research. On November 17, 2018, five nurse researchers presented findings of their research with African American families at the Gerontological Society of America's annual meeting. The results reported and the lively discussion that ensued suggested that the current paradigms framing research and practice with African American families affected by ADRD may not be adequate. There is a need to consider culturally congruent, family-centered theories to guide research and practice with this population of families.
Introduction: Caregivers for people with dementia face a number of challenges such as changing family relationships, social isolation, or financial difficulties. Internet usage and social media are increasingly being recognised as resources to increase support and general public health. Objective: Using automated analysis, the aim of this study was to explore (i) the age and sex of people who post to the social media forum Reddit about dementia diagnoses, (ii) the affected person and their diagnosis, (iii) which subreddits authors are posting to, (iv) the types of messages posted, and (v) the content of these posts. Methods: We analysed Reddit posts concerning dementia diagnoses and used a previously developed text analysis pipeline to determine attributes of the posts and their authors. The posts were further examined through manual annotation of the diagnosis provided and the person affected. Lastly, we investigated the communities posters engage with and assessed the contents of the posts with an automated topic gathering/clustering technique. Results: Five hundred and thirty-five Reddit posts were identified as relevant and further processed. The majority of posters in our dataset are females and predominantly close relatives, such as parents and grandparents, are mentioned. The communities frequented and topics gathered reflect not only the person's diagnosis but also potential outcomes, for example hardships experienced by the caregiver or the requirement for legal support. Conclusions: This work demonstrates the value of social media data as a resource for in-depth examination of caregivers' experience after a dementia diagnosis. It is important to study groups actively posting online, both in topic-specific and general communities, as they are most likely to benefit from novel internet-based support systems or interventions.
Background: The present study aimed at investigating loneliness and burden experienced by family members caring for relatives diagnosed with Alzheimer disease. Methods: Participants were 40 caregivers of inpatients with Alzheimer disease. Correlation and multiple regression analyses were conducted to investigate whether caregivers' loneliness (uni- and multidimensional) and burden are associated with and predicted by (1) specific caregiver characteristics and/or (2) patients' dementia severity and neuropsychiatric symptoms. Results: Loneliness was significantly correlated with caregivers' sex, age, and living circumstances, while burden was significantly correlated with caregivers' education solely. Regression analyses revealed that caregivers' sex and living circumstances contributed significantly to variance explanation of loneliness (but not burden), while the additional consideration of patient variables did not improve model fit. Conclusions: Loneliness reported by caregivers of relatives diagnosed with dementia is significantly modulated by caregiver (but not patient) characteristics. Notably, both uni- and multidimensional loneliness scales seem to be sensitive diagnostic tools.
COVID-19 pandemic in Argentina has affected the care of older adults with dementia deeply. Our objective was to study how the obligatory social isolation affected stress caregiver and burden of care of family members of subjects living with dementia in the community after the initial 4 weeks of quarantine in our setting. We did a questionnaire survey among 80 family caregivers of persons with Alzheimer's disease (AD) or related dementia collected on April 2020. We designed a visual analog scale to test the level of the burden of care. Characteristics of people with dementia and their caregivers were analyzed with descriptive (mean, standard deviation, frequency and percent) and inferential statistics (chi-square test). The sample included older adults (mean age: 80.51 +/- 7.65) with different stages of dementia. Family was the primary provider of care in 65%. Overall, COVID-19 confinement increased stress caregiver independently of the dementia stage, but those caring for severe cases had more stress compared to milder forms of the disease. Other findings were that half of the subjects with dementia experienced increased anxiety and that most family members discontinued all sort of cognitive and physical therapies. Family members' main concerns were for severe dementia cases, fear of absence of the paid caregiver during the epidemic, and for mild cases fear of spreading the disease while assisting patients with instrumental activities. A partnership between departments of public health, care workers and families must be planned to guarantee continuity of care during these unique COVID-19 times.
Background and objective: Given that most dementia care is provided at home by family caregivers, caregivers' health and outdoor activities may influence persons with dementia (PWDs)' mobility. At the same time, PWDs' functional deterioration and mobility changes might affect mobility behaviours in their caregivers. The aims of this pilot study were to examine the relationship of PWD's life‐space mobility (LSM) with their caregiver's LSM and to investigate the role of caregiver and PWD characteristics in determining the level of LSM in both PWDs and caregivers. Design and method: A cross‐sectional survey was conducted with 26 caregivers providing dementia care at home. Caregivers were used as proxy for assessing sociodemographic, clinical and physical function in PWDs. Caregivers' sociodemographic characteristics, LSM, social support, depressive symptoms, caregiving burden and preparedness for caregiving were measured. Results: The level of LSM in caregivers was correlated with the PWD's LSM level. Caregivers who perceived high levels of social support and readiness for caregiving tended to report high levels of LSM. PWDs' age and independence in instrumental activities of daily living were correlated with caregivers' LSM. Conclusions: The study findings suggest that the caregiver's LSM influenced and was affected by the PWD's LSM. This underscores the need for additional research that examines the role of caregivers' psychosocial and physical health on PWDs' mobility and the context of dementia care and its influences on how dementia care dyads decide and participate in mobility behaviours. Implications for practice: The findings of this pilot study will be helpful in identifying a target for interventions designed to delay the onset of mobility disability and maintain and improve social participation in PWDs. To minimise the effects of mobility limitations in PWDs, it is critical to examine their mobility issues from multilevel perspectives, including their caregiver's LSM levels and characteristics that have implications for both research and clinical practice.
Background: The interdependence between patient and caregivers' health, which is when the patients' and informal caregivers' emotion, cognition and/or behavior affects that of the other person is well documented among dyads experiencing cancer and heart disease, but scant research has assessed interdependence among those with brain injuries or dementia and Latina/o populations. This study aimed to assess the interdependence of patient and caregiver depression, patient functional independence and caregiver burden among non-Latina/o and Latina/o and patients with brain injuries and dementia and their caregivers. Methods: Patients and caregiver dyads (n = 96) were recruited from a trauma hospital. Participants completed measures on patient and caregiver depression, patient functional independence and caregiver burden. Participants provided written informed consent. Patient inclusion criteria included: (1) diagnosis with a brain injury or dementia, (2) minimum age of 12, (3) community dwelling and (4) ability to verbally communicate and complete study measures. Caregivers were only included if they were informal, unpaid, family or a friend. Nonparametric Spearman's Rho correlations were conducted to test the study hypotheses. Discussion: There was consistently a statistically significant positive relationship between caregiver depression and caregiver burden for all groups. For non-Latina/o patient and caregiver dementia dyads, there were associations between patient depression and caregiver depression. For non-Latina/o dementia dyads, functional ability was only associated with patient depression. For Latina/o patient and caregiver brain injury and dementia dyads, the only statistically significant relationship was between caregiver depression and caregiver burden. Health services should embrace family-focused mental health and respite interventions.
Introduction Family carers are cornerstones in the care of older people living with dementia. Family carers report extensive carer burden, reduced health-related quality of life (HRQoL), and extensive time spent on informal care (Time). Health literacy (HL) is a concept associated with people's ability to access health services, and navigate the healthcare system. This study's aim was to investigate HL among family carers, and investigate the associations between HL and carer burden, HRQoL, and Time spent on informal care. Method We designed a self-administered survey comprising validated instruments, including the Health Literacy Scale (HLS-N-Q12) to measure HL, Relative Stress Scale (RSS) to measure carer burden, the EQ-5D-5L instrument to measure HRQoL, and some modified questions from the Resource Utilization in Dementia (RUD) questionnaire to measure time spent on informal care (Time). Descriptive analysis in addition to bivariate and multiple linear regressions were undertaken. In multiple linear regression analysis, we used HL as the independent variable to predict the outcomes (carer burden, HRQoL, Time). Analyses were adjusted for the effects of explanatory independent variables: age, gender, education levels, urban residency, having worked as health personnel, caring for someone with severe/mild dementia, and being born abroad. Findings In a non-probability sample of 188 family carers from across Norway, most of them female and over the age of 60, we found high levels of HL. In the bivariate analysis, carer burden and HRQoL (EQvalue) showed significant associations with HL. In the multiple regression analyses, HL was statistically significantly associated with carer burden (B = -0.18 CI:-0.33,-0.02 p = 0.02), HRQoL (EQvalue: B = 0.003 with 95% CI: 0.001, 0.006 p = 0.04), and Time (B = -0.03 with 95% CI: -0.06, 0.000, p = 0.046), after adjusting for the effect of independent variables. Conclusion This is one of the first studies to investigate the associations between HL and different outcomes for family carers of older people living with dementia. Additional research into the associations identified here is needed to further develop our understanding of how to support family carers in their roles. Targeted support that increases family carers' HL may have potential to enhance their ability to provide sustainable care over time.
Aim: Informal caregivers play a vital role in the care of people with Alzheimer's Disease (AD), yet caregiving is associated with caregivers' burden. The initial objective of the study was to develop a new outcome measure to assess quality of life (QoL) in AD caregivers. Methods: Informal (non-professional) caregivers providing 75% or more of the care activities for, and living in the same household as, a person with AD were invited to take part in the study. Qualitative interviews (N = 40) were conducted with AD caregivers in the UK and thematic analyses were applied to generate a pool of potential items. A draft questionnaire was produced and adapted for use in Italy, Spain, Germany and the US. In each of the 5 countries, cognitive debriefing interviews (N = 76) were conducted to determine the questionnaire's face and content validity, followed by a postal validation survey (N = 268). The data from these surveys were combined to reduce the number of items and assess the new questionnaire's psychometric properties. Results: Thematic analysis of the UK interview transcripts generated a draft questionnaire, which was successfully translated into each additional language. The items were well accepted and easy to complete. However, reanalysis of the qualitative interview data revealed that spousal and non-spousal caregivers identified different experiences of caregiving. A review of the item pool indicated that items were primarily targeted at spousal caregivers. Therefore, further analyses of the postal survey data included spousal caregivers only (n = 116). The results supported scaling assumptions (e.g., corrected item-total correlations >= 0.32), targeting (e.g., floor/ceiling effects <2.5%), internal consistency (alpha >= 0.93) and test-retest reliability (r(s) = 0.88) of the new questionnaire, according to classical test theory. Assessment of external construct validity yielded results in accordance with a priori expectations. QoL scores were most strongly related to scores on the emotional reactions sections of the Nottingham Health Profile and the General Well-Being Index. The new questionnaire was found to be capable of detecting meaningful differences between respondents; spousal caregivers had worse QoL when the person with AD was confused (p < .001), could not be left alone (p < .001), did not recognize the caregiver (p < .001), was incontinent (p < .05), and wandered around the house (p = .01). Conclusions: The Alzheimer's Disease Patient Partners Life Impact Questionnaire (APPLIQue) is a questionnaire specific to spousal caregivers of people with AD. Data support its scaling assumptions and it exhibits excellent psychometric properties according to classical test theory. The questionnaire is recommended for use in intervention studies where the QoL of spousal caregivers is of interest.
Introduction. The paper presents findings from a study that investigated information needs of caregivers of Alzheimer's disease patients' in Croatia, a country in which health and social care systems for such persons are insufficiently developed. Special emphasis is put on the barriers caregivers face in obtaining required information or services. Methods. Interviews with 11 Alzheimer's disease patients' caregivers from the area of Eastern Croatia were conducted. Interpretative phenomenological analysis was chosen as the best method to interpret the caregivers' experience of information support received from the Croatian system. Analysis. Topics were defined for each interview and then superordinate topics were defined for the whole sample. Results. Results show that Alzheimer's disease patients' caregivers in Croatia are faced with numerous obstacles. No organised information support system was detected. Conclusions. A more holistic approach to information support is needed. Authors suggest an Alzheimer's disease information package to be distributed through the family doctors' practices.
Background Dementia care in the Netherlands is increasingly dependent on informal care and has the aim to keep persons with dementia at home for as long as possible. However, little is known about the preferences and needs of people with dementia living at home. Including people with dementia and their informal caregivers in research and policy creation could help to identify necessary forms of support, and tailor care to their personal preferences and needs. Objective To identify important components of in-home care for persons with dementia and their informal caregivers in the Netherlands. Design Semi-structured interviews across the Netherlands, between March and June 2019 using thematic analysis. Setting and participants Persons with dementia (n = 5) and informal caregivers (n = 14) were primarily recruited through dementia care organizations. Additionally, a case manager was recruited to reflect upon the semi-structured interviews findings. Results Five themes concerning important care components were identified including the need for: a social network, formal care, information, emotional support and easier access to care. The complexity of the dementia care system posed a common difficulty for persons with dementia and informal caregivers. Conclusion This study suggests that a dementia care package should be developed that includes both informal and formal care, the provision of information and emotional support, and help with access to care. The creation of this care package could help to tailor dementia care to the preferences and needs of the persons with dementia and their informal caregivers.
Background and Objectives: Caring for a person with dementia places a significant burden upon informal caregivers and leads to decreased psychological and physical health, which is why dementia caregiver interventions have been developed. However, empirical evidence for the efficacy of those interventions is inconclusive and the last comprehensive meta-analysis (Pinquart & Sorensen. Helping caregivers of persons with dementia: Which interventions work and how large are their effects? International Psychogeriatrics. 2006;18(4), 577-595.) was published more than 10 years ago. Research Design and Method: This meta-analysis aims to update the meta-analysis conducted by Pinquart and Sorensen. Based on a systematic search in electronic data bases, effects of 282 controlled studies were integrated. The effectiveness of different intervention types and influences of study characteristics were evaluated. Results: Interventions had, on average, a significant, small-to-moderate effect on the improvement of ability/knowledge, subjective well-being, burden, depression, and the caregiver's anxiety as well as symptoms of the care recipient. No mean effect was found in regard to reducing the risk of institutionalization. Most intervention types had an effect on the reduction of burden as well as on other outcomes. Psychoeducation and multicomponent interventions affected most outcomes, whereas the efficacy of other intervention types was domain-specific. Discussion and Implications: There is evidence for the efficacy of dementia caregiver interventions, though due to having predominantly small effect sizes, there is still room for improvement. Interventions should be tailored to the desired outcome. More research on long-term effects, effects on anxiety and institutionalization, efficacy of respite and support interventions, care recipient training, and the intervention process is needed.
At present, the level of health literacy, social support, and care ability of dementia caregivers is not very high. Therefore, the purpose of this study was to construct a structural equation model to explore the relationship between health literacy, social support, and the care ability of dementia caregivers. It is hoped that the study will provide a theoretical basis for future intervention. We recruited 225 dementia patients and their caregivers from August 2018 to June 2019 at the Department of Geriatrics and Neurology. We issued a health literacy questionnaire, social support scale, and a care ability questionnaire. Statistical analyses were performed using SPSS 19.0 and SPSS Amos 23.0. The mean scores for health literacy, social support, and care ability were 13.93 +/- 4.18, 34.64 +/- 6.42, and 44.44 +/- 9.31, respectively. Health literacy was directly related to social support (path coefficient = 0.454). Social support was directly related to care ability (path coefficient = 0.293). Furthermore, health literacy was directly related to care ability (path coefficient = 0.561), while health literacy had indirect associations with care ability via social support (path coefficient = 0.133). This study showed that improving the health literacy of caregivers effectively improved their care ability, and that social support was important for the link between health literacy and care ability. Medical staff and family members can provide appropriate health education and social support according to the characteristics of caregivers to improve the care ability of caregivers, improve the quality of life of patients, and delay the disease process.
No abstract. Discusses a trial in Japan to demonstrate feasibility and efficacy of a multi‐component intervention for caregivers of people with dementia comprising CBT and positive psychology.
Providing educational interventions to informal dementia caregivers has been shown to have numerous positive outcomes including improving general well-being and quality of life as well as reducing depression, anxiety, and caregiver stress. The purpose of this study is the development, delivery, and evaluation of caregiver conferences to educate informal dementia caregivers about dementia and caregiving. We provided eight half-day conferences for informal caregivers to educate them about Alzheimer's disease and related dementias (ADRD) and make them aware of community and state resources. Demographic and program evaluation surveys including an assessment of Alzheimer's disease knowledge were administered to participants. A total of 563 community-based caregivers attended the conferences. Participants tended to be female, White, and well-educated. Evaluation surveys showed high levels of satisfaction with the training. Paired t-tests showed no significant differences in AD knowledge prior to and following the training. Although there were no statistically significant improvements in participant ADRD knowledge, participant reported satisfaction levels with the conferences were high with the agreement that their educational needs were met and that the information that they learned will help improve the care they provide to the individual(s) with ADRD.
Aim: To investigate perceptions of informal caregivers of community-dwelling persons with dementia (PwD) regarding health and social care services and their correlates using the Behavioral Model of Healthcare Utilization as the theoretical framework.; Methods: This was a cross-sectional study using a purposive sampling technique to identify, through community-based health and social care services, caregivers of PwD. Face-to-face interviews were conducted with 118 informal caregivers (78.8% female, mean age = 58.9 years) via a structured questionnaire.; Results: Three 'Perceptions of Services' subscales were identified: 'Availability and Adequacy of Services' (AAS), 'Physicians' Competence' (COMP), and 'Professionals' Behavior' (PB). Predisposing factors (gender, employment, familism) and enabling/impeding factors (caregiving impedes work, quality of life aspects - environment and social relationships, information about dementia) were significant correlates of the AAS and COMP subscales. Familism was negatively associated with the AAS subscale. PwD's perceived declined physical and behavioral functioning was related to worse perceptions regarding professionals' behavior (PB) toward the PwD.; Conclusion: Understanding the factors associated with caregivers' perceptions of health and social care community services may guide the development of interventions that facilitate the appropriate use of those services, provide increased support to PwD and their caregivers, and delay potential institutionalization.
Introduction: Family caregivers of people living with dementia require a range of accurate, current, and reliable information throughout the care trajectory. Much of this information is available online, however it can be difficult for caregivers to identify and decide what content is relevant to them. Little is known about how online design cues impact family caregivers' decision to assess how trustworthy information is and whether to engage with it.; Methods: Our exploratory research focused on the interface design of CARE-RATE, an online search tool intended to support more effective information searches for family caregivers seeking dementia care-related resources. Data from focus groups were coupled with design literature to inform the development of three mockups that were evaluated by seven dementia caregiver experts.; Results: Participants preferred a search bar design because of its simplicity, familiarity, and functionality. Design elements that impact trust included logos from reputable organizations, transparency of content author, and ratings from other caregivers.; Conclusion: Feelings of trust regarding information, including the ability to ascertain trustworthiness, is a major aspect of caregivers' willingness to engage with online content. Transparency and familiarity appear to be key elements that impact caregivers' trust in online information, which agrees with current web design research.
• Family dementia caregivers described use of several everyday technologies. • In this sample, common technology use patterns were shaped by the caregiving need. • Perceived utility, existing familiarity, and social resources promoted technology use. • Caregiver perspectives must be harnessed in the design and delivery of technology.
Family caregivers provide the majority of care for people with dementia, often balancing multiple caregiving roles. Technology-based interventions have demonstrated strong potential for supporting family caregivers in navigating these roles, yet translational uptake of these interventions remains limited. A comprehensive understanding of how caregivers engage and evaluate everyday technological supports is necessary to foster broader adoption. Through semi-structured interviews with 20 caregivers, the present study aimed to explore caregivers' everyday use and appraisal of technological supports. We found that caregivers use specific technological supports to meet specific caregiving needs (e.g. coordination, information seeking, direct care), and exhibit unique technology use patterns (e.g. trial-and-error) shaped by the caregiving need. Caregivers shared positive appraisals of technological supports for caregiving, citing the role of perceived utility, existing familiarity, and social resources in their acceptance and uptake. These findings illustrate important perspectives regarding everyday technology with immediate relevance for intervention design and functionality.
Purpose: This study aims to analyze home confinement impact on individuals with neurocognitive disorders (NCD) through informal caregiver's perspective and examine how it has affected caregiving burden. Methods: Thirty-six caregivers (64.94 +/- 13.54 years, 41.7% female) of individuals with NCD (74.28 +/- 6.76 years, 66.7% female) selected from the Body & Brain exercise program were interviewed over the phone. The following instruments were used: Barthel Index (BI) to assess care recipients' ability to function independently on activities of daily living (ADL), the Neuropsychiatric Inventory (NPI) to evaluate neuropsychiatric symptoms, and the CarerQol-7D/ CarerQol-VAS to determine caregiver subjective burden/well-being. Results: Pre and post-confinement comparisons showed that care recipients significantly declined their independence in ADL (p = 0.003) and increased NPI total score (MD = 5.72; 95% CI: 1.19 to 10.25, p = 0.015). As for caregivers, results also showed an increased caregiving burden (MD = -0.17; 95% CI: -0.27 to -0.08; p = 0.001) and a decline in their well-being (p = 0.015). Discussion: COVID-19 crisis sheds light on how imperative it is to find solutions and design contingency plans for future crisis, in order to ensure properly sustained support to dementia caregiving dyads and mitigate caregivers' burden.
• Online interventions improve the condition and preparedness of caregivers, but future evaluations should consider study designs with multiple time points, control groups, and content that is personalized and interactive. • Results are encouraging that the training programs included in this systematic review improved caregiver knowledge, self-efficacy, anxiety, depression, caregiver burden and satisfaction. • Results, however, were less consistent when evaluating competency, stress, and care recipient status.
Over the next thirty years, Alzheimer's disease rates will increase alongside global aging. With the anticipated increase in demand, knowledgeable and skilled dementia caregivers will be in need across the long-term care spectrum. This study is a systematic review of online dementia-based training programs for formal and informal caregivers conducted to analyze evidence for using online training programs. We used the Preferred Reporting Items for Systematic Reviews (PRISMA) method. Methodological quality was assessed by the Cochrane Collaboration Back Review Group criteria. No previously published systematic review has analyzed online dementia training programs among both formal and informal caregivers. A systematic search of Web of Science, PsychInfo, and PubMed resulted in a final sample of (N = 19) studies. Results suggest that online interventions improve the condition and preparedness of caregivers, but future evaluations should consider study designs with multiple time points, control groups, and content that is personalized and interactive.
Background: Non-pharmacological therapies for persons with dementia (PWD) are needed. Objective: To develop and test the Paired Preventing Loss of Independence through Exercise (PLIÉ) program, an integrative group movement program for PWD and care partners (CPs). Methods: Participants were randomized to immediate or delayed start to Paired PLIÉ in community-based classes (1 hour, 2 days/week, 12 weeks, 3 home visits). Co-primary outcomes included standard measures of cognition, physical function,and quality of life (PWD) and caregiver burden (CPs) assessed by blinded assessors, analyzed using linear mixed models to calculate effect sizes for outcome changes during Paired PLIÉ, controlling for randomization group. Anonymous satisfaction surveys included satisfaction ratings and thematic analysis of open-ended responses. Results: Thirty dyads enrolled, 24 (80%) completed. PWD (mean age 80; 55% female) experienced significant improvement in self-rated quality of life (Effect Size+0.23; p = 0.016) when participating in Paired PLIÉ, while CPs experienced a non-significant increase in burden (-0.23, p = 0.079). Changes in physical and cognitive function in PWD were not significant. All CPs returning the satisfaction survey (n = 20) reported being moderately-to-highly satisfied with the program. Thematic analyses identified physical (e.g., sit-to-stand, more energy), emotional (enjoyment), and social benefits (peer-to-peer interaction) for PWD and CPs; challenges were primarily related to getting to the in-person classes. Conclusion: Paired PLIÉ is a promising integrative group movement program that warrants further study. It is feasible and may improve self-rated quality of life in PWD. Although CPs may experience increased burden due to logistical challenges, most reported high satisfaction and physical, emotional, and social benefits.
Dementia caregiving is associated with depression, stress, and sleep disturbance. A daily use caregiver sleep survey (DUCSS) was developed to evaluate caregiver sleep. The tool was distributed to 24 informal caregivers and validated using the Rasch model, which indicated that the 17-item survey produced sleep quality measures of sufficient reliability for both group-level and individual-level comparisons (reliability = .87). The sample size was sufficient to provide precise measures of the item's position along the scale (item difficulty) (reliability = .85), so outcomes associated with sleep quality levels could be evaluated. We observed that the structure of the instrument is unidimensional, meaning the wording does not contain systematic biases peripheral to sleep quality. DUCSS is a useful tool for caregiver assessment and monitoring.
• There is a lack of social capital scale specialized for family caregivers of people with dementia. • We developed the new social capital scale for family caregivers of people with dementia. • The 17-scale was assessed for model fit, dimensionality, reliability and validity. • This social capital scale had sufficient reliability and evidence of validity.
Although several scales have been designed to measure social capital, none have been specialized for caregivers of people with dementia, even though social capital is important in terms of continuing care provision. Therefore, we developed and validated a 17-item measure to assess social capital among caregivers of people with dementia. We assessed psychometric properties using responses from a questionnaire survey that included a draft of a social capital scale. Factor analysis identified three factors involving 17 items with a Cronbach's alpha of.85. The intra-class coefficient for test–retest reliability was.71. The correlation with positive aspects of caregiving was.62 (p <.01). The results suggest that our scale could be a useful tool to assess social capital among caregivers of people with dementia.
The main aim of this study is to review the literature to show how ideas around virtual communities of practice (VCoP) offer a model for supporting informal caregivers of Alzheimer's patients (caregivers) to learn how to deal with caregiving demands. Caregivers are individuals who have a significant personal relationship with and provide a broad range of unpaid assistance to an older person or an adult with a chronic or disabling condition outside of a professional or formal framework. This review will examine the current evidence on the needs of caregivers, identify dimensions to be considered in VCoP design and suggest further directions of research. The investigation is an integrative review that builds a bridge between different areas of work. The outcome is eleven dimensions for the design of successful VCoPs for caregivers: Network Structure, Technology, Moderator, Scale, Alignment, Community Design, Sense of Trust, Knowledge Sharing, Sustainability, Ethics and Evaluation. In addition, we propose a Tree Metaphor to present our research results. Well-designed interventions based on VCoP principles have the potential of addressing caregivers' needs.
Background: People with dementia and their informal caregivers get in touch with the healthcare system predominantly via contacts with primary care providers. Among these, community pharmacists have been denominated as the health professionals most accessible to the public. Communication with and counselling people with dementia and their informal caregivers present particular challenges to pharmacists.; Aim: This study aims to research the challenges faced and strategies used by community pharmacists who deal with people living with dementia and their informal caregivers.; Methods: Within the context of two workshops with 74 participants, 15 small groups were formed, each of which generated and discussed a small story. Fourteen of those narratives were reported, tape recorded and transcribed. In these 14 narratives, community pharmacists reflected on their experiences with people with dementia or their informal caregivers. The narratives were systematically analysed and interpreted.; Findings: Among the main challenges reported by the workshop participants are the difficulty of identifying a person with dementia; the question of what appropriate communication is; the only partially successful networking with doctors, nursing personnel and support institutions; unsuccessful counselling; and the tension between the economic situation and the care for people with dementia and their informal caregivers. In general, strategies for dealing with people with dementia are characterised by uncertainty whereas communication with informal caregivers is well rehearsed and effective.; Conclusions: Community pharmacies require possibilities to retreat for counselling as well as the possibility for pharmacists to take time for people with dementia and their informal caregivers in everyday pharmacy life. Reflective spaces for narrations about difficult situations provide relief for staff in community pharmacies.
Background and Objectives: Dementia and vision impairment (VI) are common among older adults but little is known about caregiving in this context. Research Design and Methods: We used data from the 2011 National Health and Aging Trends Study, a nationally representative survey of Medicare beneficiaries, linked to their family/unpaid helpers from the National Study of Caregiving. Vision impairment was defined as self-reported blindness or difficulty with distance/near vision. Probable dementia was based on survey report, interviews, and cognitive tests. Our outcomes included hours of care provided, and number of valued activities (scored 0-4) affected by caregiving, per month. Results: Among 1,776 caregivers, 898 (55.1%, weighted) assisted older adults without dementia or VI, 450 (21.9%) with dementia only, 224 (13.0%) with VI only, and 204 (10.0%) with dementia and VI. In fully adjusted negative binomial regression analyses, caregivers of individuals with dementia and VI spent 1.7 times as many hours (95% confidence interval [CI] = 1.4-2.2) providing care than caregivers of those without either impairment; however, caregivers of individuals with dementia only (95% CI = 1.1-1.6) and VI only (95% CI = 1.1-1.6) spent 1.3 times more hours. Additionally, caregivers of individuals with dementia and VI had 3.2 times as many valued activities affected (95% CI = 2.2-4.6), while caregivers of dementia only and VI only reported 1.9 times (95% CI = 1.4-2.6) and 1.3 times (95% CI = 0.9-1.8) more activities affected, respectively. Discussion and Implications: Our results suggest that caring for older adults with VI involves similar time demands as caring for older adults with dementia, but that participation impacts are greater when caring for older adults with both dementia and VI. Translational Significance: When compared with caring for older adults with either dementia or vision impairment, caring for older adults with both dementia and vision impairment involves more hours of caregiving per month and further limits caregivers' ability to participate in social activities. Low-vision rehabilitation and integration of low-vision services into the care of older adults with dementia and vision impairment may reduce caregiver burden.
Background: Dementia care is associated with physical, emotional, and monetary impact on the informal carers providing unpaid care. Differences in the personal characteristics of caregivers may help explain the variations in the costs of dementia care. Objective: The aim of this study was to analyze the effect of caregivers' sense of coherence (SOC) on direct and indirect costs in dementia care. Methods: A cross-sectional study was conducted in community dwelling caregivers of patients with Alzheimer's disease. Data of healthcare services were obtained from clinical registries, and information was collected from caregivers regarding their use of social care resources and time spent caregiving. The transformation of all costs into Euros was made assigning a fixed cost of 10.29 (sic)/h and 16.24 (sic)/h for assisting in instrumental and basic activities of daily living, respectively. Caregivers' SOC was assessed using the Orientation to Life Questionnaire (OLQ-13). Adjusted regression models were developed, with different types of costs as dependent variables. Results: A sample of 147 caregivers was recruited. The mean OLQ-13 score was 73.3 points (SD = 11.6). The regression models showed a small association between caregivers' SOC and direct costs, mainly linked to the use of social care resources (r(2) = 0.429; beta = -15.6 D /month), and a greater association between SOC and indirect costs (r(2) = 0.562; beta = -222.3 D /month). Conclusion: Increasing caregivers' SOC could reduce dementia care costs by decreasing the use of social care resources and caregiving time.
Family caregivers are vital to telehealth-delivered dementia care. The objective of this mixed methods descriptive study conducted in the VA Bedford Healthcare System was to examine caregiver satisfaction with a video telehealth dementia home safety occupational therapy evaluation. Ten caregivers of Veterans with dementia participated. Ratings of caregiver satisfaction, measured by nine Likert scale items including ability to see and hear, were examined in relation to person and visit-related contextual factors extracted from research assistants' field notes, to develop an in-depth understanding of caregiver experience. Person factors included caregiver age and gender and Veteran cognitive status. Visit-related contextual factors included occurrence of technical glitches. Caregiver visit satisfaction was overall positive, with exceptions related to technological glitches and the presence of the person with dementia during the visit. Veteran cognitive status appeared to influence caregiver satisfaction. Implications of the study are that proactively addressing technical glitches and incorporating dementia stage-specific approaches may optimize caregivers' telehealth experience.
Family caregivers of persons with Alzheimer's disease and related dementias (CADRD) provide significant support to their family members but often experience challenges and stress that impact their quality of life. Peer supporters can be an important resource to help alleviate stress associated with caregiving, yet few published studies have examined peer supporters for CADRD. This retrospective cohort study examined data collected from a peer support helpline for CADRD in a middle Atlantic state. Four years of data were reviewed to examine trends across time. Data analysis indicated that the most often reported issues by CADRD callers were related to their own emotional well-being. Results demonstrated that peer supporters have potential to address practical, physical, social, and emotional needs of caregivers who reach out. Nurses are well-positioned to partner with peer support specialists to best address the practical and emotional support needs and self-care challenges faced by CADRD.
Objective: To explore the association between role overload (RO) and sleep maintenance insomnia (SMI), and the moderation effects of social support and social engagement (SE). Methods: We report a cross-sectional study using data drawn from the 2015 National Health and Aging Trends Study and National Study of Caregiving. We used multiple regression and controlled for demographics and potential confounders. Results: Nearly 45% of caregivers reported suffering from SMI during "some" and "more" nights within the past month with one half reporting "almost" or "every" night. RO was found positively associated with the risk of SMI. Instrumental support moderated the effect of RO on SMI overall, although moderation was limited to a subsample of adult children caregivers. Discussion: The sleep quality of dementia caregivers may be affected by RO, particularly for adult children caregivers. Increasing instrumental support may be beneficial to caregiver's sleep quality.
Background: More than four million people in India have some sort of Alzheimer's. This global estimate of 43.8 million people living with Alzheimer's in 2016 in the World Alzheimer's Study is close to an estimated 46 8 million in 2015. A study published on early detection and diagnosis of Alzheimer's by the Alzheimer's association. In the study, they concluded that education years among caregivers is a predictor of Alzheimer's experience. It appears that family members, especially those with lower levels of education, need to have more knowledge of Alzheimer's. Objectives: 1) To assess the existing knowledge regarding early warning signs and it's management of Alzheimer's disease among care giver of elderly client. 2) To evaluate the effectiveness of planned teaching on knowledge regarding early warning signs and it's management of Alzheimer's disease among care giver of elderly client. 3) To associate the knowledge scores with selected demographic variables. Methodology: The pre-test and post-test research design was used. Research approach was Interventional Evaluatory Approach and the sample for the study is general population. The Samples size is 50 will be obtained by using Non-Probability Convenient sampling technique. The setting of the study is selected area of Wardha. Expected Results: The result of the present study is intended to examine the improvement of the knowledge score early warning sign's and their management of Alzheimer's disease among elderly caregivers, hence it will also be evaluated by post-test.
Objective: This study meant to analyze the main challenges and the care provided by nursing teams during the process of caring for elderly people bearing Alzheimer's disease and their family caregivers. Methods: It is an integrative literature review that was performed through article searching in the Scientific Electronic Library Online (SciELO) and the Literatura Latino-americana e do Caribe em Ciencias da Saude (LILACS) [Latin-American and Caribbean Literature in Health Sciences]. There were obtained 783 studies, of which only 13 met the inclusion criteria. Results: Care strategies associated to Alzheimer-related forms of behavior were proposed, namely, forgetfulness, denial of bathing, and the acceptance of the disease by the family. The lack of training and knowledge by sonic nursing professionals was evidenced as a challenging element vis-a-vis the relationship with elderly, people and their family caregivers, Conclusion: It is important that public policies pursue to guarantee caring practices for elderly people bearing Alzheimer's disease, approaching the real needs experienced by such population, as well as family caregivers and health professionals.
Underutilization of community care services has been described for informal dementia caregivers. Most research has however examined caregivers' access to home or respite care rather than to services for themselves. The aims of this study are: to describe access and retention of informal dementia caregivers in psychosocial interventions; examine the perceived effects of interventions among users and motives for non-use among non-users; and compare caregivers with and without lifetime access and retention in psychosocial interventions across predisposing, enabling and need variables. A cross-sectional study was conducted with 179 Portuguese caregivers, who replied to a web-based survey. Participants were fairly distributed among those who have never (49.7%) and those who have ever accessed (50.3%) psychosocial interventions. Individual psychological support was the most used intervention (32.2%). Caregivers' age, time elapsed since diagnosis and the relationship with the care receiver were associated with lifetime access to various intervention types. Dropout was above 50% for most intervention types, except for psychoeducation (31.8%). Associations were found between a history of dropout/retention and caregivers' education, perceived mental health, and the number of hours spent caring. Most users of psychoeducational interventions (>80%) appraised it as beneficial to learn about the disease, provide quality care and cope with caregiving. Informational barriers were the most reported by non-users of psychoeducational interventions (45.1%). The findings show that dementia caregivers continue facing barriers to use and keep using community services for themselves. The influence of particular predisposing and need variables on access to psychosocial interventions can vary according to intervention types.
Caring for people with dementia is a major challenge for relatives and society worldwide. Understanding the family caregivers' needs is crucial to promote their care‐giving role during the disease trajectory. The aim of this mixed‐method systematic review was to identify and synthetise the existing literature on the needs of family caregivers of people with dementia at home. PubMed, CINAHL, Cochrane Database of Systematic Reviews and PsycINFO databases were systematically explored to find quantitative, qualitative and mixed‐method studies published between 2009 and 2019. A total of 1,196 citations were retrieved and 34 studies were included in the review. The variety of interrelated needs emerged from studies has been summarised in four themes: (a) Being supported, (b) Receiving accessible and personalised information, (c) Being trained and educated to care for their beloved with dementia and (d) Finding a balance. Care‐giving for individuals with dementia is an ever‐changing process characterised by continuous adjustments to their needs. The majority of a family caregivers' needs are oriented towards receiving support, help in offering daily care and finding a balance between the care‐giving role and their own personal needs. For family caregivers, receiving information is a priority to improve their knowledge and to develop coping abilities, care skills and strategies aimed at promoting a balance between care assistance duties and their own needs. They also need social, psychological and emotional support and access to flexible, tailored and timely formal care. Further studies are recommended to detect changes in family caregivers' needs throughout the disease progression in order to tailor formal care offered by social and healthcare services.
Purpose Many individual and family hardships are associated with poorly understood palliative care needs arising from advanced dementia within India. The purpose of this paper is to explore the experiences of people in India affected by advanced dementia and to shape educational approaches for practitioners and the local community. Design/methodology/approach Three focus groups with family carers of people (n = 27) with advanced dementia were undertaken with local communities in South India. One focus group was carried out in English and two in the local language (Kannada) and translated to English. Findings The findings of the focus groups are presented in four themes, conditions of caring, intersecting vulnerabilities, desperate acts of care and awareness of education and training needs. These themes highlight the challenges faced by family carers of people with advanced dementia and describe the potential harm, abuse and poor mental well-being facing both the person with dementia and the family carer as a result of their situation. Research limitations/implications There is a need to explore ways to ensure inclusivity and sensitivity in the research process and enable equal participation from all participants. Practical implications The findings highlight a lack of support for family carers of people with advanced dementia and demonstrate the need for dementia-specific integrated and palliative care approaches in India. Originality/value This paper provides insight into the experiences and challenges facing family caregivers of people living with advanced dementia in India to shape practitioner education in a way that will underpin effective dementia-specific palliation and integrated services.
Background: Caring for patients with dementia at home is often a long-term process, in which the independence of the patient declines, and more responsibility and supervision time is required from the informal caregiver. Objective: In order to minimize and reduce caregiver burden, it is important to explore its trajectory and the accompanying risk factors as dementia progresses; the objective of this systematic review. Methods: PRISMA guidelines were followed in this systematic review. Three databases, PubMed, PsycINFO, and EMbase, were systematically searched in November 2019 using specific keywords. Results: 1,506 hits emerged during the systematic search but only eleven articles actually met the inclusion criteria for this review. The trajectory of caregiver burden is highly variable and depends on multiple factors. Important risk factors included: patients' behavioral and neuropsychiatric symptoms, and their decline in functioning in (I)ADL; the caregiver's age, gender, and physical and mental health; and, within the dyads (patient/caregiver), cohabitation and kinship. Conclusion: There is no one-size-fits-all for predicting how caregiver burden will change over time, but specific factors (like being a spouse and increased behavioral impairment and decline in functional status in the patient) may heighten the risk. Other factors, not yet comprehensively included in the published studies, might also prove to be important risk factors. Future research in the field of reducing caregiver burden is recommended to integrate the patient, caregiver, and context characteristics in the trajectory of caregiver burden, and to assess more clearly the phase of the dementia progression and use of external resources.
Background: Caring for people with dementia at home requires considerable time, organization and commitment. Therefore, informal caregivers of people with dementia are often overburdened. This study examined the effects of the telephone-based Talking Time intervention, which is an approach used to strengthen the psychological health-related quality of life (HRQoL) and social support of informal caregivers of people with dementia living at home. Methods: This study was a Medical Research Council framework phase two randomized controlled trial. The intervention consisted of a preliminary talk, information booklet, six structured telephone-based support group meetings and a structured written self-evaluation of each support group meeting. The control participants performed their usual individual self-organized care. After completing the data collection, the control group received the Talking Time intervention for fidelity reasons. The primary outcome was the self-rated psychological HRQoL of the informal caregivers, which was measured with the mental component summary of the General Health Survey Questionnaire Short Form 12 (SF-12). Results: Thirty-eight informal caregivers and their relatives were included and allocated to the intervention or control groups (n = 19 each). After 3 months, the Talking Time intervention group demonstrated an increase in the self-rated psychological HRQoL scores, whereas the scores decreased in the control group. However, the standardized effect size of 1.65 (95% Confidence Interval, - 0.44 - 3.75) was not significant. Additionally, the secondary outcomes demonstrated no significant results. The differences between the groups in most outcomes were in the expected direction. No adverse effects were identified due to the intervention. Conclusions: The Talking Time intervention is feasible and shows nonsignificant promising results with regard to the self-rated psychological HRQoL. After further adjustment, the intervention needs to be evaluated in a full trial. Trial Registration: Clinical Trials: NCT02806583 , June 9, 2016 (retrospectively registered).
Background informal carers of people with dementia are at greater risk of anxiety and depressive disorders if they find caregiving to be a burden. The aim of this study was to use a network analysis of cross-sectional data to investigate the relationships between anxiety and depressive symptoms in family carers of older people with dementia who experience burden. Methods sixty family carers exhibiting high levels of burden using the Zarit Burden Interview were included in the study. Participants completed the Hospital Anxiety and Depression Scale. The network analysis identified the depression and anxiety symptom network using features including a topological graph, network centrality metrics and community analysis. The network was estimated through the graphical LASSO technique in combination with a walktrap algorithm to obtain the clusters within the network and the connections between the nodes (symptoms). A directed acyclic graph was generated to model symptom interactions. Results the resulting network architecture shows important bridges between depression and anxiety symptoms. Lack of pleasure and loss of enjoyment were identified as potential gateway symptoms to other anxiety and depression symptoms and represent possible therapeutic targets for psychosocial interventions. Fear and loss of optimism were highly central symptoms, indicating their importance as warning signs of more generalised anxiety and depression. Conclusions this network analysis of depressive and anxiety symptoms in overburdened family carers provides important insights as to what symptoms may be the most important targets for behavioural interventions.
Background There is a need to better understand the experiences and support needs of paid and family carers of people with an intellectual disability and dementia, and the role of Intellectual Disability Dementia Care Pathways (IDDCPs). This study explored the experiences of carers, and IDDCPs and other support structures within those experiences. Methods A constructivist grounded theory methodology was implemented. Data were obtained through 23 semi‐structured interviews with two family carers, eight paid carers and eight healthcare professionals. Findings The study's theory produced five interrelated categories: Impact of Dementia, Challenging the Diagnosis Process, Continuum of Support, Continuity and Continuum of Understanding. Conclusions Findings have demonstrated the importance of planning and supporting carers’ holistic needs; the role of an IDDCP in the post‐diagnostic support (or lack of it) for carers; and the importance of a timely diagnosis of dementia. Recommendations for practice are offered.
In the UK, the quality of post-diagnostic care and support for people with dementia and their family carers is variable and depends on the availability of services in each person's local area. This article considers the support services available for families affected by dementia and discusses how telephone helplines can assist those who may have no access to other types of support. It presents a case study describing a call to the Admiral Nurse Dementia Helpline, a service run by nurses with expertise in dementia care and provided by the charity Dementia UK. This is followed by a reflection on the call from the nurse's perspective. The case study-based reflection demonstrates the complexity of providing support through a helpline and the specialist knowledge and skills required to provide the appropriate level of support.
Background and rationale SPECAL is a model of care for people with dementia based on a novel conceptualisation of memory and how this changes in dementia. Carers adapt their communication style to prevent distress and promote well‐being for the person with dementia. However, there is limited scientific evidence on the effectiveness of SPECAL. Aim This study explored mechanisms of SPECAL through a qualitative enquiry with family carers. Method Semi‐structured interviews were conducted with family carers who had been coached in SPECAL and applied its principles and practices. Thematic analysis was applied. Findings All participants had found SPECAL helpful in caring for a person with dementia. The core themes of this positive experience were empathy, harmony and resilience. Synthesis of these themes contributes to a proposed model of the mechanisms of SPECAL. Conclusion In applying SPECAL, carers gained an empathetic insight to the feelings of the person with dementia. This empathy leads to a more harmonious environment, which enhances the carer’s resilience.
Objective: We aimed to identify sources of caregiver burden in middle-aged and older Latino caregivers of people with Alzheimer disease and related dementia (ADRD). Methods: Participants were recruited through an agreement with the Rush Alzheimer's Disease Center Clinic Data Repository. We conducted semistructured interviews with 16 middle-aged and older Latinos who were the primary caregiver for a family member diagnosed with ADRD. The interview guide consisted of questions and probes to capture participants' perceptions of family caregiving. Direct content analysis was performed. Results: Participants were aged 50 to 75 years (n = 16) and a majority female (n = 12). The sources of burden identified were (1) caregiver responsibilities, (2) caregiving-related health decline, (3) lack of support, (4) financial status, (5) vigilance, and (6) concerns about the future. Conclusions: The influence of gender roles seemed to play a role in caregivers' perceptions of sources of burden, especially on caregiver responsibilities and perceptions of lack of support. Latinos cultural values such as familismo and marianismo likely reinforced gender disparities in family caregiving.
Background: Dementia is a neurodegenerative chronic condition characterized by a progressive decline in a person's memory, thinking, learning skills, and the ability to perform activities of daily living. Previous research has indicated that there are many types of technology interventions available in the literature that have shown promising results in improving disease progression, disease management, and the well-being of people with dementia (PwD) and their informal caregiver, thus facilitating dementia care and living. Technology-driven home care interventions, such as Connected Health (CH), could offer a convenient and low-cost alternative to traditional home care, providing an informal caregiver with the support they may need at home while caring for a PwD, improving their physical and mental well-being.; Objective: This study aimed (1) to create a multidimensional profile for evaluating the well-being progression of the PwD-informal caregiver dyad for a year during their use of a CH platform, designed for monitoring PwD and supporting their informal caregivers at home, and (2) to conduct a long-term follow-up using the proposed well-being profile at different time-interval evaluations.; Methods: The PwD-informal caregiver well-being profile was created based on the World Health Organization International Classification of Functioning considering the following outcomes: functional status, cognitive status, and quality of life for the PwD and mental well-being, sleeping quality, and burden for the informal caregiver. Over a year, comprehensive assessments of these outcomes were conducted every 3 months to evaluate the well-being of PwD-informal caregivers, using international and standardized validated questionnaires. Participants' demographic information was analyzed using descriptive statistics and presented as means and SDs. A nonparametric Friedman test was used to analyze the outcome changes and the progression in the PwD-caregiver dyads and to determine if those changes were statistically significant.; Results: There were no significant changes in the well-being of PwD or their caregivers over the year of follow-up, with the majority of the PwD-caregiver dyads remaining stable. The only instances in which significant changes were observed were the functional status in the PwD and sleep quality in their caregivers. In each of these measures, post hoc pairwise comparisons did not indicate that the changes observed were related to the deployment of the CH platform.; Conclusions: The follow-up of this population of PwD and their informal caregivers has shown that disease progression and physical and mental well-being do not change significantly during the time, being a slow and gradual process. The well-being profile created to analyze the potential impact of the CH platform on the PwD-informal caregiver dyad well-being, once validated, could be used as a future tool to conduct the same analyses with other CH technologies for this population.; International Registered Report Identifier (irrid): RR2-10.2196/13280.
Worldwide 46.8 million persons are living with dementia and many are requiring assistance with performing daily living or instrumental functions. It is often the task of family members to provide care for their relatives with dementia. However, they are often the silent, unseen and unacknowledged figures in the lives of people living with dementia. In 2015, we used a phenomenological design utilising visual participatory methods in the form of collages and interviews to explore and describe the transition experiences of eight family members (seven females and one male) living in a South African city regarding how they became caregivers of their relatives with dementia. They often entered their caregiving roles unexpectedly, often not having much choice regarding whether or not to take on the caregiving role. Family members caring for relatives with dementia have unique support needs as they transition into the caregiving role.
Background: Advanced nurse practitioners (ANPs) within memory services can support prompt diagnoses of dementia. Further understanding of the role is necessary as evidence on its effectiveness is limited. Aim: To assess service user and carer satisfaction with the ANP role within Kirklees memory assessment team. Methods: A cross-sectional survey was undertaken to evaluate carer and patient perceptions of the ANP role in a local memory assessment team. The survey was developed using the Royal College of Nursing's four pillars as a structure: clinical/direct care practice, leadership and collaborative practice, improving quality and developing practice, and developing self and others. Results: One hundred and fifteen surveys were sent out, and 85 were completed, a response rate of 73.9%. Patients expressed significant satisfaction with the ANP, in particular in the areas of direct clinical practice (84%) and quality of care received (87%). Conclusion: Patients and families are highly satisfied with the service provided by the ANP. High-quality research is needed on the cost effectiveness and outcomes of ANP interventions.
Background: The present study aims to investigate the quality of the dyadic relationship between mild Alzheimer patients and their caregivers. The main objective is to evaluate the consistency, agreement and validity of the German version of the Scale for Quality of the Current Relationship in Caregiving (SQCRC). The secondary objective was to examine the association of relationship quality with quality of life (QOL) in patients with mild Alzheimer's disease (AD) and their caregivers. Methods: In this study, a sample of 50 patients diagnosed with mild AD and their primary caregivers were included. Participants underwent a full neuropsychological evaluation. The quality of the relationship between persons with AD and their caregivers was assessed using the SQCRC. Furthermore, other scales of relationship quality, well‐being of the person with AD, and well‐being of the caregiver were used. Results: The results showed that the SQCRC has a good internal consistency and high validity. Also, relationship quality as rated by the AD patients (r = 0.37, P < 0.1) and their caregivers (r = 0.51, P < 0.1) was significantly correlated with QOL. Conclusions: The findings suggest that many persons with mild AD can rate their relationship quality and that the patient's self‐rated relationship quality is a substantial predictor of their QOL.
Persons living with Alzheimer's disease and related dementias (ADRD) frequently experience pain and behavioral and psychological symptoms of dementia (BPSD) which decrease quality of life (QOL) and influence caregiver burden. Home healthcare professionals however may underrecognize or lack the ability to manage BPSD. This protocol describes an ADRD palliative quality assurance performance improvement program for home healthcare, Aliviado Dementia Care-Home Health Edition. It includes training, mentoring, and a toolbox containing intervention strategies. This embedded pragmatic clinical trial will utilize a multi-site, cluster randomized control design. Recruitment will occur from three home healthcare agencies located in New Jersey, Utah, and Florida. At each agency, care teams will be randomized as clusters and assigned to either the Aliviado Dementia Care program or usual care. We plan to enroll 345 persons living with ADRD and their informal caregiver dyads. The primary outcome will be to measure QOL in both the person living with ADRD and their informal caregiver, and emergency department visits and hospital admissions. Secondary outcomes in the person living with ADRD will include the examination of pain, BPSD, antipsychotic and analgesic use. Secondary outcomes in caregivers include burden, depressive symptoms, functional health and wellbeing, and healthcare utilization. This study will be the first large-scale embedded pragmatic clinical trial in home healthcare focused on care quality and outcomes in addressing QOL in ADRD. If proven successful, the intervention can then be disseminated to agencies throughout the country to improve the quality of care for this vulnerable, underserved population. Clinical Trials.gov: NCT03255967.
This meta-analysis examined the prevalence of depression and burden among informal care-givers of people with dementia (PwD) and compared the prevalence of depression between male and female, and spousal and non-spousal, care-givers. The quality of studies was evaluated and moderator variables explored. A search of six electronic databases (PsycARTICLES, PsycINFO, MEDLINE Complete, SCOPUS, Web of Science and ProQuest) was conducted from the first available date to the 31 October 2017. Inclusion criteria involved observational studies on the prevalence of burden or depression among informal care-givers of PwD. Forty-three studies were examined with a total of 16,911 participants. The adjusted pooled prevalence of depression was 31.24 per cent (95% confidence interval (CI) = 27.70, 35.01) and burden was 49.26 per cent (95% CI = 37.15, 61.46), although heterogeneity among prevalence estimates was high. Depression prevalence estimates differed according to the instrument used and the continent where the study was conducted. The odds of having depression were almost one and a half times higher in female compared to male care-givers. No significant difference was observed between spouses and non-spouses. Most studies had a medium risk of bias. Results suggest a great need within this population for interventions that are effective at reducing burden and depressive symptoms. It therefore appears imperative for dementia services that are not providing such interventions to do so.
Background: Caring for a person with Alzheimer's disease (AD) is associated with significant mental burden e.g., depression and anxiety, and difficulties with social, familial, and professional functioning. To date, few studies have examined variables which would allow for a comprehensive and detailed study of the relationship between personal resources and caregiver health status, with a majority of studies focusing on factors that contribute to increased caregiver's burden. Moreover, the available evidence fails to address differences in the functioning of formal and informal carers. Paying proper attention to the problems of nursing home staff can help identify important risk factors. Therefore, this study compared mental health problems in informal and formal caregivers and examined the relationship between mental resources and mental health problems in both groups of caregivers. Methods: This cross-sectional study examined 100 formal (n = 50) and informal (n = 50) caregivers of AD patients. Personal resources were measured with the Social Support Questionnaire (SSQ), the Generalized Self-Efficacy Scale (GSES), and the Sense of Coherence Questionnaire (SCQ), while mental health was assessed with the Depression Assessment Questionnaire (DAQ) and the General Health Questionnaire (GHQ). Multivariate stepwise regression was performed separately for both investigated groups. Results: There were no significant differences between informal and formal caregivers in terms of psychological variables, i.e., sense of coherence, social support, self-efficacy, or mental health problems. In contrast, there were different significant predictors of mental health problems in both groups. Comprehensibility (SCQ) was a significant predictor of mental health problems measured by DAQ and self-efficacy (GSES) was a significant predictor of mental health problems measured by GHQ in informal caregivers. For formal caregivers, emotional support (SSQ) and comprehensibility (SCQ) were significant predictors of mental health problems measured by DAQ, while tangible support (SSQ) and meaningfulness (SCQ) were significant predictors of mental health problems measured by GHQ. Conclusions: Personal resources are significant predictors of mental health outcomes in caregivers of AD patients. Preventive actions should therefore include assessment of factors affecting caregivers' mental health in order to provide them with necessary care and create appropriate support groups.
Objective: To compare the costs and monetary benefits of non-pharmacological interventions for patients with Alzheimer's disease in real-world settings. Methods: A systematic review was performed to determine the most effective treatment strategies for being able to stay at home for patients with Alzheimer's disease. Care-management, family support, and multidisciplinary rehabilitation were identified as effective interventions applicable in the Finnish healthcare setting. Data on medical and social service costs, and the costs of residential care for all patients newly diagnosed with Alzheimer's disease in 2 major cities in Finland were analysed in a 4-year follow-up study. The potential cost savings of the different treatment strategies were assessed. Results: The annual cost increased from (sic)9,481 to (sic)28,400 (mean per patient) during the 4-year follow-up. Cost savings were achieved in care-management, family support programmes, and rehabilitative cognitive and social activation if the patients' transition to long-term care was delayed by 2.8, 1.8 and 43.0 days, respectively. Conclusion: Care-management and informal caregiver support for patients with Alzheimer's disease may benefit patients and result in concurrent cost savings. Delaying the decline in cognitive and social functioning through rehabilitation is indicated for more severe phases of Alzheimer's disease, and the costs appear to be compensated by savings in the cost of long-term care.
Presently, there is a dearth of theoretical models to guide research on the population of former dementia caregivers. The purpose of this article is to describe the development of the Post-caregiving Health Model and its potential for generating a more nuanced understanding of the health of family caregivers following the death of a care recipient with dementia. The model highlights the impact of personal and environmental characteristics, appraisal, coping, and emotion on long-term health outcomes in this population and offers a viable framework for studying long-term health outcomes among caregivers following the care recipient's death.
Aim: To examine the factorial structure of the Portuguese version of PAC scale and to analyse background and contextual factors that are more likely to be associated with higher levels of PAC. Method: The PAC scale, a sociodemographic questionnaire and measures assessing burden and physical and mental health were administered to 204 informal caregivers of dementia patients. Results: Exploratory factor analysis revealed a two‐factor structure; internal consistency was adequate. Higher scores were negatively correlated with caregiver burden and distress. Better health perception, care recipient's older age, providing care to more than one care recipient and overall self‐reliance were correlated with higher levels of PAC. Discussion: The PAC scale was found to be a reliable and valid measure. Dementia caregiving circumstances and caregivers' and care receivers' characteristics play an important role for the presence of PAC, but relate distinctively with its dimensions. Implications for Practice: Findings can help mental health nurses to recognize distinctive relations between PAC and caregiving variables.
There is a considerable need for support interventions for caregivers of people with dementia in developing countries, such as India. The purpose of the study was to identify the components and understand the acceptability of an online training and support program for dementia caregivers in India. Three focus group discussions were carried out with dementia caregivers (2) and health professionals (1) to understand the requirements of an online training and support program from their perspective. The commonly recurring themes were identified and defined using thematic content analysis. The expectations from an online training and support program were wide-ranging from information about identification and management of dementia to support caregiver well-being. Use of simple language, cultural relevance, and an interactive design were suggestions to facilitate the use of the support program. Lack of time, difficulty in accessing the internet, lack of awareness about the portal, difficulty in reaching the rural population were anticipated as challenges in using the program. The study highlights the requisite components of a first of its kind online training and support program in India by integrating the experiences, motivations, challenges, and expectations of caregivers and professionals involved in dementia care. The focus group discussions in the current study provide a road map for the development of an online caregiver training and support program underlying the perspectives of the stakeholders for the consolidation of an effective dementia care program for lower resourced settings.
Background: The world's aging population is increasing, with an expected increase in the prevalence of Alzheimer disease and related dementias (ADRD). Proper nutrition and good eating behavior show promise for preventing and slowing the progression of ADRD and consequently improving patients with ADRD's health status and quality of life. Most ADRD care is provided by informal caregivers, so assisting caregivers to manage patients with ADRD's diet is important. Objective: This study aims to design, develop, and test an artificial intelligence-powered voice assistant to help informal caregivers manage the daily diet of patients with ADRD and learn food and nutrition-related knowledge. Methods: The voice assistant is being implemented in several steps: construction of a comprehensive knowledge base with ontologies that define ADRD diet care and user profiles, and is extended with external knowledge graphs; management of conversation between users and the voice assistant; personalized ADRD diet services provided through a semantics-based knowledge graph search and reasoning engine; and system evaluation in use cases with additional qualitative evaluations. Results: A prototype voice assistant was evaluated in the lab using various use cases. Preliminary qualitative test results demonstrate reasonable rates of dialogue success and recommendation correctness. Conclusions: The voice assistant provides a natural, interactive interface for users, and it does not require the user to have a technical background, which may facilitate senior caregivers' use in their daily care tasks. This study suggests the feasibility of using the intelligent voice assistant to help caregivers manage patients with ADRD's diet.
The article discusses research which described the process used to develop and evaluate the psychometric properties of Perceived Needs Questionnaire for Dementia Informal Caregivers (PNQ-IDC) designed to measure the needs of informal dementia caregivers. Topics covered include the identification of needs for which health-care professionals could provide support, the assessment of subjective caregiver burden, and the validity and reliability of the PNQ-IDC.
Background: Modern technologies, including smartphone apps, have the potential to assist people with cognitive impairment with activities of daily living, allowing them to maintain their independence and reduce carer burden. However, such tools have seen a slow rate of uptake in this population, and data on the acceptability of assistive technologies in this population are limited.; Objective: This pilot study included older adults with cognitive impairment and their carers, and explored the perceived needs for and acceptability of an app that was designed to be a simple assistive tool for activities of daily living. In particular, this study aimed to assess the acceptability of common app functions such as communication, reminder, navigation, and emergency tools in this population, and to compare patients' and carers' responses to them.; Methods: A total of 24 German participants with mild cognitive impairment or dementia and their family carers separately completed two short questionnaires. The first questionnaire asked the participants with cognitive impairment and their carers to self-rate the patients' cognitive impairment levels and affinity to technology. Following a demonstration of the app, participants rated the usability and acceptability of the app and its functions in a second questionnaire.; Results: Participants rated themselves as much less cognitively impaired than their carers did (P=.01), and insight into the level of support they received was low. The majority of the participants (19/24, 79%) and their carers (20/24, 83%) had low affinity to technology, and even after the demonstration, 63% (15/24) of the participants had low interest in using the app. A breakdown of acceptability responses by app function revealed that participants were more amenable to the reminder function, the emergency feature, and a wearable form of the app. Features that centered around carers monitoring participants' movements were reported to be less acceptable to participants.; Conclusions: This study highlights the importance of focusing on acceptability and the consumer's perceptions in the development of assistive technology for older adults with cognitive impairment. Participants showed an aversion to functions they perceived as eroding their independence, while functions that more closely aligned with independence and autonomy were perceived as more acceptable.
Background The need for a Core Outcome Set to evaluate physical activity interventions for people living with dementia, across stages of disease and intervention settings has been established. This qualitative study precedes the consensus phase of developing this Core Outcome Set and aims to: (i) compare the outcomes identified by patients, carers and professionals to those previously reported in the literature; (ii) and understand why certain outcomes are considered important. Design and methods In-depth semi-structured interviews were conducted with people living with dementia, family carers and professionals (n = 29). The outcomes identified in the interviews were mapped to a list of outcomes reported in a recent literature review. An in-depth thematic analysis was conducted to understand the importance of physical activity in dementia care. Results A comprehensive, inductively derived list of 77 outcomes, common across stages of dementia and intervention setting, was put together for the consensus phase of this Core Outcome Set: ten of these were new outcomes generated by this qualitative study. Five themes explained why stakeholders perceived physical activity outcomes as important for people living with dementia: "being well and staying well", "having a role towards others", "maintaining identity", "being connected to the present" and "delivering good quality care". Conclusion Ten new outcomes of physical activity, not previously reported in recent literature, were identified. Physical activity is considered important to people living with dementia due to its positive impact on multiple health outcomes for both patients and carers.
Background: Provision of care and support for people with dementia and family carers is complex, given variation in how dementia manifests, progresses and affects people, co-morbidities associated with ageing, as well as individual preferences, needs, and circumstances. The traditional service-led approach, where individual needs are assessed against current service provision, has been recognised as unfit to meet such complexity. As a result, people with dementia and family members often fail to receive adequate support, with needs remaining unmet. Current research lacks a conceptual framework for explaining variation in satisfaction of care needs. This work develops a conceptual framework mapped onto the care delivery process to explain variations in whether, when and why care needs of people with dementia are met and to expose individual-, service-, system-level factors that enable or hinder needs satisfaction. Methods: Data collected through 24 in-depth interviews and two focus groups (10 participants) with people with dementia and family carers living in the North East of England (UK) were analysed thematically to develop a typology of care needs. The need most frequently reported for people with dementia (i.e. for support to go out and about) was analysed using themes stemming from the conceptual framework which combined candidacy and discrepancy theories. Results: The operationalisation of the framework showed that satisfaction of the need to go out was first determined at the point of service access, affected by issues about navigation, adjudication, permeability, users' resistance to offers, users' appearance, and systems-level operating conditions, and, subsequently, at the point of service use, when factors related to service structure and care process determined (dis)satisfaction with service and, hence, further contributed to met or unmet need. Conclusion: The conceptual framework pinpoints causes of variations in satisfaction of care needs which can be addressed when designing interventions and service improvements. [
Objective Researchers have consistently shown that providing care in a gradually deteriorating situation, such as dementia, can be stressful and detrimental to the caregiver's (CG) health. Although stressor appraisal is important in understanding variability in CG outcomes, the role of personal mastery, a coping resource, in shaping CG's health outcomes has not been considered. The primary goal of this paper was to determine whether personal mastery is associated with a survival advantage for spousal CGs of persons with dementia. Methods This study assessed the association of CG burden and personal mastery with longevity over a 10-year period in 71 spousal CGs of persons initially diagnosed with mild cognitive impairment. Results Over the 10 years, 16 of 71 CGs (23%) died. Cox regression models with right censoring of CGs' time to death showed that after adjusting for the health of family CG, spousal CGs who reported high levels of burden had an 83% reduced risk of death when they also reported high personal mastery (hazard ratio [HR] = 0.17, 95% confidence interval [CI] 0.04, 0.65). Conclusions Findings have implications for support programs that help build personal mastery.
Background: The longitudinal pattern of medication use among family caregivers of people with dementia is not well understood, despite the potential for medication over- or under-use. Objectives: To investigate caregiver medication use over a five-year follow-up using data obtained via self-report and from a national prescription register, and compare agreement between medication data obtained from the two sources. Methods: Medication data for 222 family caregivers of people with Alzheimer's disease were obtained via self-report and from the Finnish Social Insurance Institution. Generalised estimating equations, Kappa statistics and related samples Wilcoxon signed rank test were used to analyse medication use over time. Results: The mean number of medications used by caregivers increased from 3.4 to 4.1 (self-reported current regular medications) and 2.4 to 2.8 (reimbursed prescription medications during the past 90 days) over five years (p < 0.001). Significantly, more medications were identified via self-report (mean 3.6, SD = 3.3) than the national prescription register (mean 2.6, SD = 2.4, Z= –12.300, p < 0.001). Agreement between the two data sources was good for cardiovascular medications and anti-hypertensives (Kappa = 0.883–0.967, p < 0.001) and medications for acid-related disorders (Kappa = 0.508–0.092, p < 0.001). Agreement was moderate for analgesics (Kappa = 0.281–0.477, p < 0.001) and psychotropics (Kappa = 0.281–0.562, p < 0.002). The proportion of caregivers using five or more medications increased from 27.5% to 44.6% (self-report), and 16.7% to 27.7% (register) (p < 0.001). Conclusion: Caregivers use an increasing number of medications in the first five years of caring for persons with dementia, and self-report using a higher number of medications than data from the national prescription register suggest.
BACKGROUND Caregivers of persons with dementia (PWD) can experience loss and grief long before the death of the PWD, with such caregiver grief postulated to affect the well‐being of the PWD‐caregiver dyads. However, the longitudinal effects of caregiver grief and the moderating effects of social services are not yet clear. OBJECTIVES We investigated the longitudinal effects of caregiver grief on caregiver depression, caregivers' quality of life (QoL), and caregivers' perceived positive aspects of caregiving (PAC); and examined potential effect modification of social service utilization (dementia care services, caregiver programs, and paid caregivers). DESIGN AND SETTING A prospective cohort study with three time points of assessments (at 0, 6, and 12 months). PARTICIPANTS Family caregivers of community‐dwelling PWD (n = 178). MEASUREMENTS At time point 1 (baseline), participants completed questionnaires that captured caregiver grief, burden, and social service utilization. Outcomes that were captured over time were: depression (time points 1–3), QoL (time point 2), and PAC (time point 3). Caregiver grief as well as interaction terms with social service utilization were included in Tobit regression to examine the association with outcomes. RESULTS: After accounting for the effect of caregiver burden, caregiver grief remained associated with depressive symptoms (P <.001) and poorer QoL (P <.001). However, compared with burden, grief contributed to larger magnitudes of the adverse effects. Grief, not burden, was associated with less PAC (P =.006 and P =.746, respectively). In contrast, burden, not grief, was associated with poorer physical health (P =.010 and P =.110, respectively). Dementia care services attenuated the effect of burden but not grief; caregiver programs did not affect burden but appeared to aggravate the effect of grief; and paid caregivers attenuated the effect of burden, and partially attenuated the effect of grief. CONCLUSION: Caregiver grief has an impact on dementia caregivers, likely through a distinct mechanism from that of caregiver burden. However, prevailing social services may not be sufficient to address grief, highlighting the need to further train care workers in this respect. J Am Geriatr Soc 68:2348–2353, 2020.
This symposium includes twelve personal narratives from people who have provided care to a spouse, parent, another relative, or friend with Alzheimer disease or related dementias (ADRD). People with ADRDs often face years of cognitive decline with memory and thinking that eventually require help from others to assist with their daily activities. Most people caring for older adults in the US are unpaid family members, friends, or other informal caregivers. People providing care often experience emotional and physical stress, or financial burdens. This symposium also includes three commentaries by experts in the fields of bioethics and philosophy, justice in healthcare, family caregiving, and end of life choices. These narratives provide a forum for exploring caregiver needs, suffering, benefits, and joys, as well as opportunities to improve the way we support caregivers and people with dementia and Alzheimer disease.
Objectives: Providing care to individuals with dementia places burden on family caregivers, which may relate to depressive symptoms. Although leisure activities may serve as a coping resource to relieve caregiving stress, only a few studies exist on how leisure and depressive symptoms associate in dementia caregivers. Moreover, less is known about the role of gender in this relationship. Thus, this study examined the relationship among leisure activity, gender and depressive symptoms. Method: A cutoff score (≥10) on the short form of the Center for Epidemiological Studies Depression Scale was used to measure presence of depressive symptoms. Independent variables were frequency of engagement in and satisfaction with leisure activities. Results: Logistic regression analyses from 632 dementia caregivers in the Resources for Enhancing Alzheimer's Caregiver Health II Study showed that more frequent and higher satisfaction in leisure engagement were negatively related to having depressive symptoms. Moreover, the negative association between frequent leisure engagement and depressive symptoms was more pronounced among male caregivers. Conclusion: Providing respite care for dementia caregivers to engage in leisure can be a promising coping strategy for this population. Also, gender difference in leisure-depressive symptoms relationship suggests different support needed for male and female caregivers in addition to leisure.
Objectives: Family carers towards the end of life face a range of difficult challenges and have high levels of support needs. The aim of this study was to explore the challenges carers of people with dementia face towards the end of life and the support needs which could be addressed by online support. Methods: Qualitative study using semi-structured interviews with 23 current and former family carers of people with dementia in England in 2016–2017. Interviews were analysed using thematic analysis methods. Results: Most carers interviewed had positive views of receiving support online via a website. Participants described a series of challenges they felt online support could address and help support them with when caring for someone with dementia towards the end of life: 1) feeling prepared and equipped; 2) feeling connected and supported; 3) balancing their own needs with those of the individual; and 4) maintaining control and being the co-ordinator of care. However many valued a mix of technology and human interaction in receiving support. Conclusions: This study has identified the key challenges for carers at the end of life that could be met by online support. Online support offers a source of support to supplement face-to-face contact, as many carers still wish to talk to someone in person. This could help alleviate pressures which health and social care systems currently face.
Background: Employed family caregivers are affected by job demands, which can affect quality of care provided to recipients. However, it is important to understand how job demands and the ability to reconcile employment and caregiving influence family caregivers' quality of life. Purpose: The aim of this study was to examine the extent to which job demands influenced quality of life for employed family caregivers of older adults with dementia in Taiwan. Methods: This cross-sectional study analyzed secondary data from self-completed questionnaires collected from December 2010 to December 2011. Participants were 214 employed family caregivers of older adults with dementia in Taiwan. How job demands and caregiving influence quality of life was determined with hierarchical multiple regression analysis. Job demands included working hours, workplace inflexibility, work inefficiency, and difficulty in reconciling work and family caregiving. Results: After controlling for demographics, caregiving resources, and caregiving role demands, employed family caregivers of older adults with dementia with fewer working hours and greater work efficiency reported significantly better quality of life (β = −.130, p =.049; β = −.263, p <.001) than those with more working hours and less work efficiency. Conclusions/Implications for Practice: Employed family caregivers of older adults with dementia who had more working hours and less work efficiency had a greater likelihood of poorer quality of life than other employed family caregivers. Clinicians could use these findings to identify groups at high risk for poor quality of life. We suggest developing policies and interventions to help employed family caregivers of older adults with dementia to reduce working hours and improve work efficiency in order to improve quality of life, which could also improve quality of care for recipients.
Background: Psychosocial interventions for people with dementia and their family caregivers together may sustain relationship quality and social connection. No previous music therapy research has examined the effects of group therapeutic songwriting (TSW) attended by people with dementia/family caregiver dyads.; Methods: This pre-post feasibility study aimed to examine the acceptability of a group TSW intervention for people with dementia/family caregiver dyads and test the sensitivity of the following outcomes: Quality of the Caregiver-Patient Relationship (QCPR, primary); Cornell Scale for Depression in Dementia (CSDD) and Quality of Life-Alzheimer's Dementia for people with dementia, Patient Health Questionnaire-9, Assessment of Quality of Life-8 Dimensions (AQoL-8D); and Zarit Burden Interview for family caregivers. Six weekly 1 h sessions guided participants to identify preferred music, brainstorm ideas, create lyrics, and record songs. Qualitative interviews were conducted with dyads who completed the intervention.; Results: Fourteen dyads were recruited and completed baseline assessments. Participants with dementia were aged 62-92 years ( M = 77, SD = 11). Caregiver participants (11 spouses, two daughters, one son) were aged 54-92 years ( M = 67, SD = 10.1). Four dyads withdrew owing to declining health or inconvenience before the program commenced ( n = 2) and after attending 1-2 sessions ( n = 2). Ten dyads formed four homogeneous TSW groups (71% completion). No statistically significant changes were detected for any measure. High QCPR ratings at baseline ( M = 57.1) and follow-up ( M = 57.4) demonstrated sustained relationship quality. For participants with dementia, large effect sizes for the CSDD suggested trends toward decreased depression ( d = -0.83) and improved mood ( d = -0.88). For family caregivers, a large effect size suggested a trend toward improvement for the AQoL-8D sub-domain examining independent living ( d = -0.93). Qualitative data indicated that session design and delivery were acceptable, and TSW was a positive shared experience with personal benefits, which supported rather than changed relationship quality.; Conclusion: High retention and qualitative data indicate that TSW was well received by participants. Effect sizes suggest that group TSW for dyads may have beneficial impacts on depression for people with dementia and quality of life for family caregivers. Future research with a fully powered sample is recommended to further examine the psychosocial impacts of group TSW for people living with dementia/family caregiver dyads. (Copyright © 2020 Clark, Stretton-Smith, Baker, Lee and Tamplin.)
Objectives: Family caregivers of people with dementia can experience loss and grief before death. We hypothesized that modifiable factors indicating preparation for end of life are associated with lower pre-death grief in caregivers. Design: Cross-sectional. Setting: Caregivers of people with dementia living at home or in a care home. Participants: In total, 150 caregivers, 77% female, mean age 63.0 (SD = 12.1). Participants cared for people with mild (25%), moderate (43%), or severe dementia (32%). Measurements: Primary outcome: Marwit-Meuser Caregiver Grief Inventory Short Form (MMCGI-SF). We included five factors reflecting preparation for end of life: (1) knowledge of dementia, (2) social support, (3) feeling supported by healthcare providers, (4) formalized end of life documents, and (5) end-of-life discussions with the person with dementia. We used multiple regression to assess associations between pre-death grief and preparation for end of life while controlling for confounders. We repeated this analysis with MMCGI-SF subscales ("personal sacrifice burden"; "heartfelt sadness"; "worry and felt isolation"). Results: Only one hypothesized factor (reduced social support) was strongly associated with higher grief intensity along with the confounders of female gender, spouse, or adult child relationship type and reduced relationship closeness. In exploratory analyses of MMCGI-SF subscales, one additional hypothesized factor was statistically significant; higher dementia knowledge was associated with lower "heartfelt sadness." Conclusion: We found limited support for our hypothesis. Future research may benefit from exploring strategies for enhancing caregivers' social support and networks as well as the effectiveness of educational interventions about the progression of dementia (ClinicalTrials.gov ID: NCT03332979).
Background: Caring for people with dementia is perceived as one of the most stressful and difficult forms of caring. Family caregivers always experience high levels of psychological burden and physical strain, so effective and practical support is essential. Internet-based supportive interventions can provide convenient and efficient support and education to potentially reduce the physical and psychological burden associated with providing care. Objective: This review aimed to (1) assess the efficacy of internet-based supportive interventions in ameliorating health outcomes for family caregivers of people with dementia, and (2) evaluate the potential effects of internet-based supportive intervention access by caregivers on their care recipients. Methods: An electronic literature search of the PubMed, EMBASE, Web of Science, CINAHL, Cochrane Library, and PsycINFO databases was conducted up to January 2020. Two reviewers (ML and YZ) worked independently to identify randomized controlled trials (RCTs) that met the inclusion criteria and independently extracted data. The quality of the included RCTs was evaluated using the approach recommended by the Cochrane Handbook for Systematic Reviews of Interventions. Standardized mean differences (SMDs) with 95% CIs were applied to calculate the pooled effect sizes. Results: In total, 17 RCTs met the eligibility criteria and were included in this systematic review. The meta-analysis showed that internet-based supportive interventions significantly ameliorated depressive symptoms (SMD=-0.21; 95% CI -0.31 to -0.10; P<.001), perceived stress (SMD=-0.40; 95% CI -0.55 to -0.24; P<.001), anxiety (SMD=-0.33; 95% CI -0.51 to -0.16; P<.001), and self-efficacy (SMD=0.19; 95% CI 0.05-0.33; P=.007) in dementia caregivers. No significant improvements were found in caregiver burden, coping competence, caregiver reactions to behavioral symptoms, or quality of life. Six studies assessed the unintended effects of internet-based supportive intervention access by caregivers on their care recipients. The results showed that internet-based supportive interventions had potential benefits on the quality of life and neuropsychiatric symptoms in care recipients. Conclusions: Internet-based supportive interventions are generally effective at ameliorating depressive symptoms, perceived stress, anxiety, and self-efficacy in dementia caregivers and have potential benefits on care recipients. Future studies are encouraged to adopt personalized internet-based supportive interventions to improve the health of family caregivers and their care recipients. Trial Registration: PROSPERO CRD42020162434; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=162434.
Objectives: Older Asians and Chinese are among the least studied populations in the dementia caregiving literature. This review seeks to critically synthesize the literature on intervention characteristics, components and tailoring strategies for dementia family caregivers in Chinese communities globally. Methods: Five electronic databases (PsychINFO, PubMed, CINAHL, ScienceDirect and Google Scholar) were searched for articles published between 1980 and July 2018. The protocol of this review was registered with PROSPERO (CRD42019132800). Results: Twenty‐nine unique interventions across 39 papers met inclusion criteria. Results from descriptive and thematic syntheses revealed that most interventions were psychoeducational, CBT‐based, multicomponent, structured, and less than a year in duration. Disease education, management of behavioral and psychological symptoms of dementia, stress coping techniques, and referral to community resources were frequently included in interventions. Community‐, culture‐ and language‐focused strategies were used to tailor interventions. The most common tailoring strategies were: (a) using community networks and media for outreach and recruitment; (b) making translations and language adaptations to the intervention materials; and (c) focusing on trust and therapeutic alliance. Most interventions produced desired outcomes, particularly reducing caregiver burden and increasing self‐efficacy. Conclusions: To our knowledge, this is the first review to date that systematically synthesized the characteristics and tailoring of dementia caregiving interventions for Chinese families globally. Current findings suggest that most interventions are effective, although many only superficially address Chinese culture. Future research should incorporate Chinese values and cross‐cultural challenges into caregiving interventions for deep‐level adaptations that could potentially be more effective to engage and support Chinese caregivers.
Objectives: To understand feedback from participants in Paired PLIÉ (Preventing Loss of Independence through Exercise), a novel, integrative group movement program for people with dementia and their care partners, in order to refine the intervention and study procedures. Method: Data sources included daily logs from the first Paired PLIÉ RCT group, final reflections from the second Paired PLIÉ RCT group, and responses to requests for feedback and letters of support from Paired PLIÉ community class participants. All data are reports from care partners. The qualitative coding process was iterative and conducted with a multidisciplinary team. The coding team began with a previously established framework that was modified and expanded to reflect emerging themes. Regular team meetings were held to confirm validity and to reach consensus around the coding system as it was developed and applied. Reliability was checked by having a second team member apply the coding system to a subset of the data. Results: Key themes that emerged included care partner-reported improvements in physical functioning, cognitive functioning, social/emotional functioning, and relationship quality that were attributed to participation in Paired PLIÉ. Opportunities to improve the intervention and reduce study burden were identified. Care partners who transitioned to the community class after participating in the Paired PLIÉ study reported ongoing benefits. Conclusion: These qualitative results show that people with dementia and their care partners can participate in and benefit from community-based programs like Paired PLIÉ that include both partners, and focus on building skills to maintain function and quality of life.
Aims: To systematically identify, evaluate and synthesize the available qualitative evidence on the mealtime care experiences of informal caregivers of people with dementia.; Design: A qualitative evidence synthesis using the Thomas and Harden method.; Data Sources: All qualitative and mixed-method studies in English and Chinese were retrieved from PubMed, Web of Science, Embase, Cochrane, CINAHL, CNKI, WanFang, and Vip from the inception of each database until November 2019.; Review Methods: Two researchers independently selected the studies using qualitative assessment and review instruments for quality evaluation and thematic synthesis for the data analysis.; Results: Ten studies were chosen for this review. The analytical themes identified included injecting a new element, moving forward in the challenge and external supports facilitating better coping.; Conclusion: Community nurses should effectively use resources to provide food-related information and services to families with dementia. Future research should combine informal caregiver experiences and clinical skills to develop high-quality interventions to improve the quality of mealtimes.; Impact: The findings established that informal caregivers experienced not only changes in their roles and concerns but also emotional changes. Informal caregivers develop different coping strategies to adapt to feeding issues without professional support. Although informal caregivers attach great importance to mealtimes and nutrition issues, they experience a lack of information and support services. Community nurses can provide more economical, practical, and accessible information resources based on informal caregivers' perceptions of mealtime care. Future interventions need to be more aware of the importance of dyad or family-centred support services.
The constantly changing process of caring for a person with dementia affects the informal caregivers' role due to its psychosocial impact. This cross-sectional study aimed to analyze the impact of the Person with Dementia informal caregiver's role caregiver to a person with dementia on the self-perceived quality of life (QoL) of the caregiver. In total, 160 informal caregivers were recruited between January and December 2019. Informal caregivers' quality of life was assessed using the European Quality of Life 5-Dimension scale, burden with the Zarit Burden Scale, emotional wellbeing using the General Health Questionnaire, and caregiver reactions using Caregiver Reaction Aspects. Patients' cognitive impairment was assessed with the Mini-Mental State Examination, their quality of life using Quality of Life in Alzheimer's Disease, and neuropsychiatric symptoms using the Neuropsychiatric Inventory. Outcomes were studied using the Pearson correlation coefficient and ANOVA test. Most informal caregivers' outcomes were significantly associated with their quality of life. Male informal caregivers have a slightly better quality of life than female caregivers ( p < 0.001). Caregiver burden ( p < 0.001), psychological wellbeing ( p < 0.001) and negative aspects of caregiving on health ( p < 0.001) correlated moderately with informal caregivers' quality of life. Factors associated with dementia, including the course of the illness and its severity with the presence of neuropsychiatric symptoms can negatively affect the informal caregiver's role and produce a low self-perception of quality of life; thus, social and professional support for informal caregivers is essential.
Background: Dementia is a care intensive disease, especially in the later stages, implying in many cases a substantial carer burden. This study assesses the use of formal and informal care resources among persons with dementia during the last month before nursing home admission. It also describes main providers of informal care and assesses the extent of informal care rendered by the extended social network. Methods: In this cross-sectional study, we collected data about persons with dementia that were newly admitted to a nursing home in Norway. Information about the amount of formal and informal care during the last 4 weeks preceding nursing home admission was collected from the primary caregivers. Clinical data were collected by examining the patients, while sociodemographic data was collected from the patients' files. Results: A total of 395 persons with dementia were included. The amount of informal care provided by the family caregiver was 141.9 h per month SD = 227.4. Co-resident patients received five times more informal care than non-co-residents. Informal care from the extended social network was provided to 212 patients (53.7%) with a mean of 5.6 (SD = 11.2) hours per month and represented 3.8% of the total informal care rendered to the patients. Formal care was provided to 52.7% of the patients with a mean of 18.0 (SD = 50.1) hours per month. Co-residency was significantly associated with more informal care, and the associations varied with respect to age, relation to the caregiver, and the caregiver's working situation. Good/excellent general health was associated with less formal care. Conclusion: Persons with dementia on the verge of admission to a nursing home are mainly supported by the family caregiver, and the use of informal care is particularly high among co-residents. In order to delay nursing home admission, future research should explore the unrealized care potential in extended social networks, as well as the potential for increasing the number of recipients of formal care services.
In the growing body of literature dealing with the consequences of family caregiving amongst people with dementia, there are few studies examining the impact of Early-onset Familial Alzheimer's Disease on caregivers. This study exposes the subjective experience of a group of family caregivers who themselves possess a genetic susceptibility to develop this form of dementia. We interviewed and analyzed the accounts of 27 caregivers belonging to family lineages carrying the E280A mutation for Early-onset Alzheimer's Disease. We utilized a phenomenological method to analyze these accounts, initially tracking seven theoretical categories (Anxiety, Depression, Burden, Resilience, Self-efficacy, Social Support, and Coping Strategies) and then subsequently two additional categories which emerged (Conceptions about the Disease and Other Vital Experiences Interfering with Caregiving). The results show that caring for a loved one while simultaneously running the risk of developing the same form of Alzheimer's Disease permeates the caregivers' experience both in a negative and a positive way. The continuous exposition to emotional stress in these caregivers should be seriously considered as they may be at risk of accelerating the onset of symptoms of Alzheimer's Disease, while simultaneously, early psychological symptoms of dementia may be masked by the emotional sequelae of caregiving, interfering with early diagnosis. Certainly, support services for the entire family group are suggested.
Behavioral and psychological symptoms are common in patients with dementia. Especially troublesome are the delusions and hallucinations of dementia-related psychosis (DRP) due to their negative impact on both patients and their carers and family members. This report reviews the impact of DRP on patients and carers, assessment tools, and coping strategies and techniques to help care partners manage DRP.
Introduction: Assistive technology and telecare (ATT) may alleviate psychological burden in informal caregivers of people with dementia. This study assessed the impact of ATT on informal caregivers' burden and psychological well-being.; Methods: Individuals with dementia and their informal caregivers were recruited to a randomized-controlled trial assessing effectiveness of ATT. Caregivers were allocated to two groups according to their cared-for person's randomization to a full or basic package of ATT and were assessed on caregiver burden, state anxiety, and depression. Caregivers' data from three assessments over 6 months of the trial were analyzed.; Results: No significant between- or within-group differences at any time point on caregivers' burden, anxiety, and depression levels were found.; Discussion: Full ATT for people with dementia did not impact caregivers' psychological outcomes compared to basic ATT. The length of follow up was restricted to 6 months.
The aim of the current study was to examine the associations between informal caregivers' perception of identity change in their care-partner, the quality of the caregiver/care-recipient relationship, and caregiver burden in a sample of 56 informal caregivers of persons with dementia. Most (96.4%) of the caregivers of persons who received a dementia diagnosis reported a perceived change in the identity of their care-partner. Caregivers' perception of relationship satisfaction was measured with the Burns Relationship Satisfaction Scale for premorbid relationship and current relationship quality, and caregiver burden was measured with the Zarit Burden scale. After controlling for variance due to dementia severity, premorbid relationship satisfaction, and current relationship satisfaction, caregivers' perceived change in the identity of the person with dementia accounted for significant variance in caregiver burden. Using a mediational model, we found support for a direct effect between perceived change in identity and caregiver burden, but we also found support for an indirect effect of relationship quality on the relation between perceived identity change and caregiver burden. The demonstrated model provides an empirically supported theoretical framework for guiding potential research and development of future interventions, which we suggest should emphasize dyads.
Objectives: • Describe 1-2 examples of experiences living and receiving care at home from the perspective of people with dementia and/or family caregivers • Describe 1-2 examples of unmet palliative care needs from the perspective of people with dementia and/or family caregivers receiving or providing care at home. Importance: People with dementia (PWD) and their families represent a growing population who is increasingly accessing palliative care in the United States. Home-based palliative care interventions should incorporate the perspective of PWD and caregivers regarding experiences and unmet needs. Objective(s): To characterize care needs and experience with palliative services at home among PWD and family caregivers. Method(s) We recruited participants who received care at a tertiary behavioral neurology clinic for semi-structured interviews. Sampling targeted PWD in mild-to-moderate stages and family caregivers, both active and bereaved. Interviews explored palliative care needs and services for dementia care at home, based on domains of the 2018 National Consensus Project. Data were analyzed by an interdisciplinary team using the constant comparative method. Results: Of 45 participants, 9 had dementia, 16 were active caregivers, 20 were bereaved caregivers; 57% had experience with Alzheimer’s disease, the remainder had less common syndromes like frontotemporal dementia. Every participant described multiple challenges and unmet palliative care needs while receiving or providing care at home. Challenges included changing relationship dynamics, uncertainty about the future, lack of knowledge of resources available, caregiver stress and burnout, isolation, cost and quality of paid caregivers. Unmet needs included anticipatory guidance, advance care planning, psychosocial support, symptom management, social connection, and the provision and coordination of services. PWD articulated fewer challenges and needs than caregivers. Many participants engaged hospice at some point. Positive experiences included receipt of guidance, emotional support, direct services; negative included one more care transition, insufficient time to build trust, or being discharged alive. Experience with specialty palliative care was rare and positive except when experienced as a step-down from hospice. When we presented a definition of palliative care, adapted from CAPC, nearly all said it sounded appealing and useful. Conclusion(s) Stakeholders indicated multiple opportunities for palliative care approaches to address dementia challenges. Impact: We will use this data to inform development of basic and specialty palliative care interventions for dementia.
Deaf sign language users living with dementia and their carers, some of whom are Deaf, routinely face everyday barriers in accessing information, support (both formal and informal) and services. The familial care situation is further complicated given that most Deaf people will choose a life partner who is Deaf and most Deaf couples will have hearing children. This study focussed specifically on the everyday experiences of Deaf carers and the impact of caring for a loved one with dementia. Drawing on data from a wider consultation about dementia care, three Deaf carers were directly interviewed in British Sign Language by a Deaf researcher about their everyday experiences of care, support, and services. Thematic analysis focussed on: access is more than the provision of interpreters; effective care for the carers; and unknowing risk taking. Findings demonstrate the multifaceted effects of barriers to knowledge and information when the care partner is also Deaf, the urgent need for effective support for Deaf carers and unrecognised safeguarding concerns that are a result of lack of access to forms of basic knowledge about living with someone with dementia and potential coping strategies. Nonetheless, the participants demonstrated novel solutions and resilience in the face of these multiple challenges. Implications are drawn for future targeted services to supported Deaf carers of people affected by dementia.
Background and Objectives Arts activities can improve social connectedness and foster reciprocity between people living with dementia and their caregivers. The extent to which the arts can help shape attitudes towards dementia remains unclear. This paper explores the impact of a 12-week visual arts program "Dementia and Imagination" on the attitudes of family and professional caregivers through a mixed-methods longitudinal investigation, underpinned by a conceptual framework of the arts in dementia care. Research Design and Methods One hundred and forty-six family and professional caregivers were recruited across three settings in England and Wales (residential care homes, a county hospital, and community venues). Quantitative and qualitative data on caregivers' attitudes and perceptions of the impact of the arts program were collected through interviews at three time points. Results Thematic analysis identified four themes shared across the caregivers: (1) Recognizing capabilities , (2) Social connectedness , (3) Improvements to well-being , and (4) Equality and personhood. Two further themes were distinct to family caregivers: (5) Duration of the effects of the art program , and (6) Enriched perspective. The final theme Inspiring professional development was distinct to the professional caregivers. The quantitative analysis found no effect for caregivers' attitude change over time. Family caregivers scored significantly lower than professional caregivers at each of the three time points. Discussion and Implications Art programs have the potential to make visible the capabilities of the people living with dementia, enabling caregivers to see the person behind the condition. This study highlights practice implications for future implementation, such as the role of the arts in dementia care education.
Background: Most persons with dementia have multiple chronic conditions; however, it is unclear whether co-existing chronic conditions contribute to health-care use and cost. Methods: Persons with dementia and >= 2 chronic conditions using the National Health and Aging Trends Study and Medicare claims data, 2011 to 2014. Results: Chronic kidney disease and ischemic heart disease were significantly associated with increased adjusted risk ratios of annual hospitalizations, hospitalization costs, and direct medical costs. Depression, hypertension, and stroke or transient ischemic attack were associated with direct medical and societal costs, while atrial fibrillation was associated with increased hospital and direct medical costs. No chronic condition was associated with informal care costs. Conclusions: Among older adults with dementia, proactive and ambulatory care that includes informal caregivers along with primary and specialty providers, may offer promise to decrease use and costs for chronic kidney disease, ischemic heart disease, atrial fibrillation, depression, and hypertension.
Objective: To identify the level of health literacy in informal caregivers of elders with Alzheimer's disease.; Methods: Descriptive study with a quantitative and qualitative approach, with health literacy as a theoretical framework. Research carried out with 42 informal caregivers of elders with Alzheimer's from a geriatrics outpatient clinic, using a questionnaire with sociodemographic data and the Health Literacy instrument.; Results: The functional and conceptual levels were more prevalent, with regards to elders with Alzheimer's, than the empowering level. Caregivers searched, evaluated, and used health information and expressed abilities to use and judge the information received.; Final Considerations: The predominance of categories in the cognitive level of learning indicates the need to strengthen the empowering level of these caregivers. Health literacy made it possible to reveal the demands of informal caregivers of elders with Alzheimer's, evaluating their individual ability to offer this type of assistance. It is also a tool capable of reaching better health results.
Population ageing within Europe has major social and economic consequences. One of the most devastating conditions that predominantly affects older people is dementia. The SMART4MD (Support Monitoring and Reminder Technology for Mild Dementia) project aims to develop and test a health application specifically designed for people with mild dementia. The aim of this feasibility study was to evaluate the design of the SMART4MD protocol, including recruitment, screening, baseline examination and data management, and to test the SMART4MD application for functionality and usability before utilization in a full-scale study. The feasibility study tested the protocol and the app in Spain and Sweden. A total of nineteen persons with cognitive impairment, and their informal caregivers, individually performed a task-based usability test of the SMART4MD app model in a clinical environment, followed by four-week testing of the app in the home environment. By employing a user-centered design approach, the SMART4MD application proved to be an adequate and feasible interface for an eHealth intervention. In the final usability test, a score of 81% satisfied users was obtained. The possibility to test the application in all the procedures included in the study generated important information on how to present the technology to the users and how to improve these procedures.
Background: Managing the complex and long-term care needs of persons living with Alzheimer disease and related dementias (ADRD) can adversely impact the health of informal caregivers and their care recipients. Web-based personal health records (PHRs) are one way to potentially alleviate a caregiver's burden by simplifying ADRD health care management.; Objective: This study aimed to evaluate Personal Health Record for Persons with Dementia and Their Family Caregivers (PHR-ADRD), a free web-based information exchange tool, using a multiphase mixed methods approach.; Methods: Dementia caregivers (N=34) were surveyed for their well-being and perceptions of PHR-ADRD feasibility and utility at 6 and 12 months using close- and open-ended questions as well as a semistructured interview (n=8). Exploratory analyses compared participants' characteristics as well as PHR-ADRD use and experiences based on overall favorability status.; Results: Feasibility and utility scores decreased over time, but a subset of participants indicated that the system was helpful. Quantitative comparisons could not explain why some participants indicated favorable, neutral, or unfavorable views of the system overall or had not engaged with PHR-ADRD. Qualitative findings suggested that technology literacy and primary care provider buy-in were barriers. Both qualitative and qualitative findings indicated that time constraints to learn and use the system affected most participants.; Conclusions: Development and dissemination of PHRs for family caregivers of persons with ADRD should aim to make systems user-friendly for persons with limited time and technological literacy. Establishing health care provider buy-in may be essential to the future success of any PHR system.
The current study examined factors related to fatigue in family caregivers of individuals with dementia using a cross-sectional design to collect subjective and objective data. Findings indicated that caregivers' sleep quality, difficulty falling asleep, and depression, as well as care-recipients' functionality, were associated with family caregivers' fatigue. Regression analysis indicated that only sleep quality significantly predicted caregivers' fatigue. Study findings suggest fatigue is common among family caregivers of individuals with dementia and may be related to sleep quality. The level of fatigue identified in the current study warrants further study with larger and more diverse samples.
Background: Family caregivers of people with Alzheimer's disease are the most important support in concrete personal and economic terms. Family dynamics play a fundamental role in the provision of informal caregiving benefits. Objective: This review aims to identify factors related to the family caregiving of relatives with Alzheimer's disease, taking specifically into account the construct of coping and expressed emotion. Methods: This is a systematic review including articles selected using search terms including "caregivers," "Alzheimer's," "family," and "relationship" in research databases. Findings were synthesized and categorized into themes. Results: A total of 454 abstracts were identified. Following screening, lateral searches, and quality appraisal, 36 studies were included for synthesis. A total of 5 themes were identified: burden; demographics; coping strategies; caregiver mental health; and family dynamics and expressed emotions. Conclusion: The quality and level of evidence supporting each theme varied. We need further research into family dynamics ameliorating the caregiving and how to measure it.
Background: The Alzheimer Café is a psychosocial intervention shown to have benefits for family carers of people with dementia. Family carers experience a period of change across all aspects of their lives following the dementia diagnosis, and require new skills and tools to navigate these new landscapes. The objective of this research was to investigate family carers' perspectives of the Alzheimer Café in Ireland, and explore how attendance may translate into broader benefits in their lives. This paper also provides an overview of Alzheimer Café models, which exist internationally. Methods: Semi-structured interviews were conducted with nine family carers of people with dementia who were currently attending or had attended an Alzheimer Café in the preceding six months. The research was conducted in three Alzheimer Cafés in Ireland. Data analysis was conducted using Braun and Clarke's six step thematic analysis framework. Results: Community, atmosphere, activity and information were described as core features of the Alzheimer Café in Ireland. The Alzheimer Café was described as a community with a good atmosphere encompassing emotional support, friendship, equality and inclusion. Family carer also highlighted Alzheimer Cafés could potentially facilitate wider community awareness and engagement. The Alzheimer Café was shown to provide an activity which facilitated relationship building within care dyads as well as with other attendees. Several information streams were identified, including guest speaker input, attendees' shared experiences, and specific advice from healthcare professionals. Conclusion: The Alzheimer Café offers strong personal support to family carers of people with dementia. Our findings suggest that Alzheimer Cafés can build family carers' capacity to manage new social, environmental and cultural challenges associated with dementia. While it is important the Alzheimer Café is enjoyable, has useful information and is supportive, it is equally important that these features generate sustained improvements for family carers external to the Alzheimer Café.
Background: While dementia policy strategies emphasize the importance of partnerships between families and formal carers to provide tailored care and effectively allocate community resources, family carers often feel left out or excluded. Poor communication has been identified as one reason for the lack of good partnerships. Few studies have investigated how family carers seek to involve themselves when they experience sub-optimal services, and how their strategies may depend on different considerations and personal abilities. Methods: Qualitative in-depth interviews were conducted with 23 family carers to explore their experiences with, perspectives on, contributions to, and interactions with healthcare services provided to older adults living with dementia. To capture nuances and variations, a semi-structured interview guide was used. Interviews were audio-recorded and transcribed verbatim. A four-step analysis of the transcripts was conducted, informed by hermeneutic and phenomenological methodology. Results: Two main involvement strategies were identified: 1) being "the hub in the wheel" and 2) getting the wheel rolling. The first strategy was used to support and complement health services, while the second was used to add momentum and leverage to arguments or processes. The two main strategies were used differently among participants, in part due to differences in personal resources and the ability to utilize these, but also in light of family carers' weighing conflicting concerns and perceived costs and benefits. Conclusions: Awareness and acknowledgment of family carers' strategies, personal resources, and considerations may help policymakers and healthcare personnel when they build or maintain good partnerships together with family carers. A better understanding of family carers' own perspectives on carer involvement is a necessary precursor to developing good care partnerships.
BACKGROUND/OBJECTIVES Hospice care confers well‐documented benefits to patients and their families, but it is underutilized. One potential reason is inadequate family support to make end‐of‐life decisions and care for older adults on hospice at home. We assessed the association between amount of family support and hospice use among a population of decedents and among specific illness types. DESIGN Prospective cohort study using the National Health and Aging Trends Study waves 2011 to 2017, linked to Medicare claims data. SETTING Contiguous United States. PARTICIPANTS A total of 1,868 NHATS decedents. MEASUREMENTS Outcome variable was 1 day or longer of hospice. Family caregiving intensity was measured by self‐reported hours of care per week and number of caregivers. Covariates included probable dementia status and other demographic, clinical, and functional characteristics. RESULTS: At the end of life, hours of family caregiving and numbers of helpers vary widely with individuals with dementia receiving the most hours of unpaid care (mean = 64.5 hours per week) and having 2.4 unpaid caregivers on average. In an adjusted analysis, older adults with cancer receiving 40 hours and more of unpaid care/week as compared with fewer than 6 hours per week were twice as likely to receive hospice care at the end of life (odds ratio = 2.0; 95% confidence interval = 1.0–4.1). This association was not seen among those with dementia or among decedents in general. No significant association was found between number of caregivers and hospice use at the end of life. CONCLUSION: Older adults at the end of life receive a high number of hours of help at the end of life, many from more than one caregiver, which may shape hospice access. Better understanding of disparities in hospice use can facilitate timely access to care for older adults with a serious illness.
The current Western health policy of ageing in place relies on a triad collaboration among patients, healthcare service providers and family caregivers. Such collaborations presuppose involvement in a vague juridical landscape. This article explores family caregivers' experiences with involvement in and influence on nursing home decision-making processes for persons with dementia. The data consist of 12 in-depth interviews with family caregivers. Using positioning theory, we demonstrate how family caregivers strive to balance their assumed duty to care for the person with their needs to care for themselves. Their involvement (or non-involvement) in the complex decision-making process is demonstrated through the following seven positions: (1) self-condemning determiner, (2) dominant, (3) proponent, (4) saluting, (5) pending, (6) prisoner, and (7) stooge. Furthermore, we discuss why expedient positions are more available for some individuals and the consequences of family caregivers' various positions on the healthcare policy aims of collaboration and equal healthcare services.
Objectives: Caregiving for a person with dementia (PWD) carries increased risk of poorer health and quality of life. Non-pharmacological interventions improve outcomes for caregivers of PWDs. We evaluated the efficacy of a modified New York University Caregiver Intervention (NYUCI), named FAMILIES, delivered to spousal and non-spousal caregivers of PWDs from diverse etiologies in a reduced number of sessions. Methods: Participants were 122 primary caregivers for community dwelling PWDs in Virginia. The intervention included two individual and four family/group counseling sessions that integrated dementia education, coping skills and behavioral management training, emotional support, and identification of family and community resources. Assessment of depression, caregiver well-being and burden, and caregiver reactions to the behavioral symptoms of dementia (BSD) were completed at baseline, the sixth session, and 6-month follow-up. Results: Symptoms of depression (p <.001) and caregiver burden (p =.001) and caregivers' capacity to effectively manage their reactions to BSD (p =.003), significantly improved at the sixth session. Benefits were maintained at 6-month follow-up. Being married and female predicted improvement in caregiver burden; being male and living in a rural area predicted reduced risk of depression. Caregivers reported that the intervention was helpful and had a positive impact on the PWD. Conclusions: Modifications to the NYUCI did not diminish its efficacy. Caregivers in FAMILIES experienced improvements in depressive symptoms, caregiver burden, and their ability to effectively manage their reactions to BSD. Systemic support for implementing FAMILIES could have a broad impact on caregivers, PWDs, and the healthcare system.
Aims: To understand factors influencing the experience of carers for people with dementia, when that person moves from living in the community to living in residential care. Specifically, we aimed to identify facilitators and inhibitors of carer adjustment during this transition. Method: A systematic search of CINAHL, EMBASE, PubMed, and PsycINFO databases was conducted. Nine qualitative articles published between 2001 and 2017, based on the experiences of 141 carers, were included. Thematic analysis was applied to the data, with the concepts of transition inhibitors and facilitators being used to structure the analytic process. Results: Analysis produced five themes, representing factors that could affect carer experiences of the focal transition-process: modifying the difficulty of this process according to their presence or absence. The themes were (1) Connection, pertaining to the carer feeling connected to the person with dementia and professionals during this transition; (2) Informed & Informing, relating to exchange of information between the carer and facility staff or health professionals; (3) The facility: welcoming & skilful, dealing with carer perceptions of the facility and their confidence in the staff; (4) It's What You Make of It, discussing the meaning the carer made of the admission and the impact this had; and (5) Sharing Responsibility, addressing how carers were affected by the perceived sharing of responsibility for care-provision. Conclusions: A supportive network has a significant role to play in facilitating this transition for carers. However, further research into what carers would find useful during this time is needed.
Aim: Based on the ageing population and the inadequate healthcare system in China, the majority of care for patients with Alzheimerʼs disease (AD) is provided by family caregivers. Caregivers suffer a long‐term heavy care burden and pressure, which affects their physical and mental health. The present study aims at investigating health‐related quality of life (HRQOL) among family caregivers of AD patients and exploring its influencing factors. Methods: This study included 206 family caregivers (76 male, 130 female) of AD patients recruited from one Tier 3 hospital, one psychiatric hospital, two gerocomiums and three communities in Ganzhou city, Jiangxi Province, China. Measures included the World Health Organization (WHO) Quality of Life (WHO/ QOL‐BREF) questionnaire, Zarit burden of care scale (ZBI), and social support rating scale (SSRS).We performed face‐to‐face or telephone interviews with patients and caregivers. The association between possible factors and changes in HRQOL was examined through stepwise multiple regression analysis. Results: The majority of family caregivers felt moderate to severe level of burden. The average HRQOL score was 54.24 ± 10.36. The mean SSRS score was 30.4 ± 10.9. The average ZBI score was 41.2 ± 12.8. The HRQOL of family caregivers of AD patients was negatively correlated with the neuropsychiatric questionnaire score, ZBI score, and chronic diseases of caregivers (P < 0.05), and positively correlated with the SSRS score (P < 0.05). Conclusion: Reduced QOL was highly prevalent among AD patient family caregivers, and the level of burden, neuropsychiatric symptoms of patients, social support, and chronic diseases of caregivers were factors associated with HRQOL, and the effect of care burden is greatest. Interventions aimed at reducing the level of burden should focus not only on the patient but also on the caregiver.
Background: Family caregivers contribute substantially to the care for older home-dwelling people with dementia, although community healthcare services tend to be underutilized. In this study, we aimed to explore the use and predictors of use of home-based and out-of-home respite care services available to older home-dwelling persons with dementia, as reported by the family caregivers. Method: A cross-sectional survey was administered to family caregivers (n = 430) in Northern Norway during April to November 2016. The use of healthcare services was categorized into two types according to principal component analysis: home-based services and out-of-home respite care services (R 2 = 44.1%). Predictors of service use were examined with bivariate correlation, multiple linear regression, and Poisson regression analyses. Results: The use of home-based services among persons with dementia was significantly higher for persons with advanced age, persons living in urban areas, persons living in an assisted living facility, persons living alone, and persons able to manage being alone for a short period of time. Among the family caregiver variables, higher age, status as a daughter, son, or other family member, higher educational level, and full-time employment also predicted greater use of home-based services. Same ethnicity was associated with use of fewer home-based services. The use of out-of-home respite care services was significantly higher among male persons with dementia and among those living in urban areas. In addition, fewer out-of-home respite care services were used by male caregivers or daughters of the care recipient, while the use was higher when the caregivers experienced more caregiving demands or had provided care for longer periods of time. Conclusions: These results indicate areas that policymakers and healthcare providers should consider to identify families who underutilize healthcare services and to achieve a more equal and efficient allocation of services in accordance with families' needs.
The aim of this study was to explore the relationship between caregivers' stress loads and dementia patient behavior, including the correlation of "patient behavior" (severity and frequency), "social care system", and "stress levels of caregivers". The research method was based on the analysis of survey data collected at a dementia specialist outpatient clinic of a medical center in southern Taiwan from November 2013 to May 2015. Those surveyed by the center included patients who visited the hospital, and their caregivers completed a questionnaire survey. During the study period, a total of 558 questionnaires for 279 pairs were distributed, and all questionnaires were recovered. According to the survey statistics, the average age of the caregivers interviewed was 53.1 years; women accounted for 61.3% of respondents, and the duration of care exceeded three years. In terms of education, most respondents were college/university graduates. The most common surveyed relationship was that of children acting as the caregiver to a parent, and the average age of the patients was 77.73 years. Most caregivers were found to live with the patients (75.3%). In terms of severity and frequency, the surveyed items with the highest average scores were both the "delusion" item of the "patient behavior" facet, the "mental support"(mean = 1.97; standard deviation, SD = 0.869) item of the "social care system" facet, and the "social life stress" (mean = 2.26, SD = 1.510) item of the "Stress levels of caregivers" facet. The research results show that the "patient behavior" and "Stress levels of caregivers" facets have a significant positive correlation, and the "social care system" and "Stress levels of caregivers" facets have a significant negative correlation. In the future, priority of service planning and implementation of long-term policy should be given to home care, since this is a cultural characteristic of Taiwan. In circumstances where a primary caregiver takes care of family members, the patient's behavior, length of care, mental support, and social life issues are key items that should be considered in the social welfare control service to alleviate the load of dementia patients on family caregivers.
More than 15 million Americans are providing care for a family member with Alzheimer's disease. Family caregivers are faced with highly stressful experiences, using strong coping skills, and implementing critical decisions with little or no knowledge or information and with virtually no preparation or assistance. The need for research efforts to focus on caregiver stress, coping mechanisms, and informed decision-making skills spearheaded a theoretical framework to study the potential relationships between family caregivers' types of stress, coping skills, and their decision-making efforts. Constructs of life event stress, role strain, self-concept stress, and coping stress were examined relative to 10 priority areas of decision-making identified by the national Alzheimer's Association. A relational non-experimental research design was utilized. Caregivers completed four Likert-scale instruments with data analyzed using descriptive statistics and rank-order correlation procedures. Findings indicated varying levels of stress, strong family self-efficacy and high levels of coping skills contribute to critical decision-making.
Family carers of people with Lewy body dementia (LBD) have a particularly high burden of care, as LBD has a faster rate of decline, greater physical dependence and additional neuropsychiatric disturbances compared with other dementias. Despite this, there are no evidence-based support services designed specifically for LBD carers. STrAtegies for RelaTives (START) is an eight-session, individually delivered coping therapy that has been shown in a randomised controlled trial to reduce depression and anxiety symptoms and increase quality of life in carers of people with dementia, with effects lasting several years. We adapted START for LBD, and piloted its use both face-to-face and on the phone with 10 carers to test acceptability and indications of similar effects in this group. Our findings suggest that the therapy was acceptable and feasible using either delivery mode, providing much appreciated and needed strategies, education and support for carers of people with LBD. Trials of effectiveness are now needed.
Background and Objectives Motivated by the high rates of health problems found among caregivers of persons with neurodegenerative disease, we examined associations between deficits in two aspects of care recipients' socioemotional functioning and their caregivers' health. Research Design and Methods In 2 studies with independent samples (N = 171 and 73 dyads), caregivers reported on care recipients' emotion recognition and emotional reactivity. Caregiver health was assessed using both self-report measures (Studies 1 and 2) and autonomic nervous system indices (Study 2). Results Lower emotion recognition in care recipients was linearly associated with worse self-reported health, faster resting heart rate, and greater physiological reactivity to an acoustic startle stimulus in caregivers. These effects held after accounting for a variety of risk factors for poor caregiver health, including care recipients' neuropsychiatric symptoms. Emotional reactivity showed a quadratic association with health, such that the lowest and highest levels of emotional reactivity in care recipients were associated with lower self-reported health in caregivers. Discussion and Implications Results shed light on the unique associations between two aspects of care recipients' emotional functioning and caregivers' health. Findings suggest potential ways to identify and help caregivers at heightened risk for adverse health outcomes.
Aims: This study aims at identifying the health effects of a strength‐based intervention on family caregivers of persons with dementia and to explore the underlying mechanism. The perception of family caregivers on the strength‐based intervention will also be explored. Design: This sequential mixed‐method study comprises a double‐blind randomized controlled trial and a descriptive qualitative study. Methods: A group of 372 family caregivers of persons with dementia will be recruited from community settings. They will be randomized to receive the strength‐based intervention or a dementia education program. Based on Antonovksy's theory of salutogenesis, the strength‐based intervention integrates skills of narrative therapy and empowerment strategies. It comprises 14 weekly group‐based sessions and two bi‐weekly follow‐up telephone calls. The education program serves as the control intervention. Validated instruments are used to measure sense of coherence, coping, caregiver burden, and health‐related quality of life at baseline, 14 weeks, and 22 weeks. Mixed‐effects models and path analysis will be used to identify the treatment effect and the mediating mechanism. A subsample of 30 caregivers who report differential changes in the health outcome will be engaged in qualitative interviews. The study was funded in 2017. Discussion: This study marks the first attempt to adopt a theory‐driven strength‐based approach to improve the health outcomes of family caregivers of persons with dementia. The stringent and comprehensive evaluation will inform its effects and the underlying mechanism. Impact: This study will have important theoretical and public health implications. Theoretically, the study will enhance understanding of Antonovsky's theory of salutogenesis by examining the modifiability of sense of coherence and the way it enhances health‐related outcomes. In terms of public health implications, the strength‐based intervention focusing on optimizing the inner strength can provide a new paradigm to promote the adjustment of family caregivers of persons with dementia. Trial Registration: This project was registered in the Clinical Trials Registry of the Centre for Clinical Research and Biostatistics (registration number: CUHK_CCRB00551; date registered: 6 April 2017).
Background: This study examined whether biological mechanisms linking dementia caregiving with an increased risk of coronary heart disease can be modified by psychosocial interventions and which caregivers might benefit the most from an intervention. Methods: Spousal dementia caregivers were randomized to 12-week treatment with either a behavioral activation intervention (ie, Pleasant Events Program [PEP]; n = 60), or an active control Information and Support (IS; n = 63) condition. Indicators of caregiving stress were assessed pretreatment and circulating cardiovascular biomarkers were measured pre- and posttreatment. Results: There were no significant changes in biomarker levels from pre- to posttreatment both by treatment condition and across all caregivers. Regardless of the treatment condition, exploratory regression analysis revealed that caregivers were more likely to show significant decreases in C-reactive protein (CRP) and D-dimer when their spouse had severe functional impairment; in interleukin (IL)-6 and CRP when they had greater distress due to care recipient's problem behaviors; in tumor necrosis factor (TNF)-α when they had higher levels of negative affect; and in IL-6, CRP, TNF-α, and D-dimer when they had higher personal mastery. Within the PEP group, caregivers with higher negative affect and those with higher positive affect were more likely to show a reduction in von Willebrand factor and D-dimer, respectively. Within the IS group, caregivers whose spouse had severe functional impairment were more likely to show a decrease in IL-6. Conclusions: Unlike the average caregiver, caregivers high in burden/distress and resources might benefit from psychosocial interventions to improve cardiovascular risk, although these observations need confirmation.
Objective: Gaining understanding of the health-related quality of life (HRQL) of family caregivers of people with dementia with Turkish or Moroccan immigrant backgrounds and to examine whether an educational peer group intervention can improve HRQL.; Methods: Understanding of HRQL and associated variables was obtained by multiple linear regression analyses. The effects of the intervention on HRQL were assessed in multilevel analyses using data collected before the start (baseline), directly after the intervention (one to two weeks after baseline) and three months after the start of the intervention. The intervention (two interactive group sessions) entailed providing information about dementia and care/support options.; Results: At baseline (n = 319), HRQL was moderately and significantly associated with migration background, gender, self-perceived pressure from informal care and the formal and informal support received (p < .05). The intervention had a small effect on emotional wellbeing directly after the intervention (p < .05) and on perceived general health status three months after (p < .05).; Conclusion: Culturally sensitive peer group education on dementia and care/support options can to some extent enhance HRQL among family caregivers in the short term.; Practice Implications: The intervention as described in this study is recommended for supporting family caregivers of people with dementia with Turkish or Moroccan backgrounds.
The Supporting Family Caregivers with Technology trial tested the FamTechCare video support intervention against telephone support. Dementia caregivers' video-recorded challenging care encounters and an interdisciplinary team provided tailored feedback. This paper reports on the effects of the intervention on caregiver confidence in managing priority challenges, a secondary outcome of this non-blinded parallel randomized controlled trial. Caregiver/person living with dementia dyads were randomized to the experimental FamTechCare video support (n = 43) or attention control telephone support (n = 41) groups. Caregivers providing in-home care to a person living with mild or more severe dementia were eligible. Caregivers identified three priority challenges using the Caregiver Target Problems Questionnaire and rated the frequency and severity of each challenge and their confidence managing the challenge at baseline and 3-months. Challenges were classified using the FamTechCare Technology-supported Dementia Care Typology. Effects on confidence were compared between groups using the Wilcoxon rank-sum test and within groups using the Wilcoxon signed-rank test. Caregiver priority challenges included managing dementia behaviors, understanding disease expectations, and performing activity of daily living care. Improvements were observed across the three categories in both groups; however, not all changes were statistically significant. No significant differences were identified between groups. Caregivers in the FamTechCare group reported benefit across all priority challenges including managing dementia behaviors, understanding disease expectations, and performing activity of daily living care. Innovative technology provides new opportunities to support family caregivers in dementia home care. Video-recording can be used to enhance support for family caregivers facing care challenges.
The aim of this study was to evaluate the effectiveness of a psychoeducational intervention, Powerful Tools for Caregivers (PTC), for family caregivers of individuals with dementia. A pragmatic, 2-arm randomized controlled trial compared the PTC intervention, as delivered in practice, to usual care. Participants randomized to usual care functioned as a control group and then received the PTC intervention. PTC is a 6-week manualized program that includes weekly 2-hour classes in a group setting facilitated by 2 trained and certified leaders. The educational program helps caregivers to enhance self-care practices and manage emotional distress. Two stakeholder organizations delivered the intervention in community settings. Participants were family caregivers of individuals with dementia recruited from the community in Florida. Primary outcomes were caregiver burden and behavioral and psychological symptoms of dementia of the care recipient. Secondary outcomes included caregiver depressive symptoms, self-efficacy, self-rated health, and life satisfaction. Measures were collected at baseline (n = 60 participants), postintervention (n = 55), and at 6-week follow-up (n = 44). Intent-to-treat analyses found PTC reduced caregiver burden (d = −0.48) and depressive symptoms (d = −0.53), and increased self-confidence (d = 0.68), but found no significant benefit for behavioral and psychological symptoms of dementia in care recipients. PTC was rated highly by participants and program attrition was low, with 94% of caregivers completing at least 4 of the 6 classes. Although no significant effects were found for behavioral and psychological symptoms of dementia, this trial supports the effectiveness of PTC to improve caregiver outcomes as delivered in the community.
Australia faces the challenge of an ageing population. The incidence of people with dementia unable to live in the community is expected to rise leading to demands on care facilities to provide specialised care. This paper reports on the effect a purpose-built Memory Support Unit has on multiple participants during the transition from home, or an aged care residence, to high level dementia care. The aim of this research was to understand the effect of a purpose-built Memory Support Unit on the experiences of those with dementia who are transitioning into this environment, their family or carers and staff. A qualitative descriptive methodology was adopted to frame the research. Face-to-face interviews were conducted with nine family members, two residents and three Registered Nurses. A purpose-built Memory Support Unit may have a positive effect on the older person, their families, carers and staff, thus improving the experience of all participants as the older person transitions into dementia care. Optimising design of the physical environment may foster a more person-centered orientation to care and positive outcomes for residents, family members or carers and staff. Purpose built environments may have a meaningful subjective effect on the wellbeing of older people during the transition from their residence to permanent dementia care, their family, carers and staff. It is recommended that architects, funding agencies and aged care providers engage with the growing body of evidence that purpose-built environments, such as the Memory Support Unit, to enhance the quality of the experience of those transitioning to high level dementia care, their family or carers and staff.
Aim: The purpose of this study was to evaluate the effect of a comprehensive mobile application program in managing behavior and psychological symptoms of home‐dwelling patients with dementia in South Korea. Methods: A nonequivalent control group pretest‐posttest design was conducted. A total of 26 family caregivers participated in this study. The application program consists of understanding of dementia, interventions, communication skills, coping methods, and bulletin boards. Data collection was performed from July 9, 2018, to October 4, 2018. Family caregivers' fatigue, sleep, and burden and patients with behavioral and psychological symptoms of dementia were measured. For data analysis, descriptive statistics, independent t tests, Mann–Whitney U test, repeated measures analysis of variance, and Friedman test were used. Results: The application program offered environmental management in an intervention using communication skills and coping methods, depending on the behavioral and psychological symptom type. The results showed significant differences between the two groups in family caregivers' fatigue (F = 11.24, p =.003) and burden (χ2 = 10.55, p =.005). Conclusion: The findings showed the application program improved family caregivers' fatigue and burden. It also suggested there is a need to develop a wandering persons location program to improve family caregivers' stress and patients' behavioral problems in future studies.
Aim: Early‐onset dementia (EOD) (defined as dementia onset before age 65) presents specific challenges and issues, adding to the negative impact of dementia on the health‐related quality of life (HRQOL) of both patients and their caregivers. However, very few published studies have specifically compared the HRQOL of caregivers of people with EOD and late‐onset dementia (LOD). This information is critical in allocating and prioritizing scarce health‐care resources. We aimed to assess the HRQOL of primary informal caregivers of community‐dwelling individuals with EOD in Singapore and compare it with that of caregivers of individuals with LOD. Methods: This was a cross‐sectional study of consecutive patient–caregiver dyads from a tertiary dementia clinic. Results: No significant differences in disease severity were found between the 111 EOD and 235 LOD patient–caregiver dyads. The mean Mental Component Summary score of the 36‐item Short‐Form Health Survey version 2 was significantly worse in caregivers of EOD patients than in LOD caregivers (mean: 41.42 vs 45.12, P = 0.001), although the mean Physical Component Summary scores were comparable (49.71 vs 49.53, P = 0.934). However, the impact of dementia early onset on caregivers' mental health diminished immediately after adjustment for the disease severity indicators, of which the Neuropsychiatric Inventory Questionnaire distress score was the only significant clinical factor (regression coefficient β = −0.29, P < 0.001). The amount of variability in the HRQOL of the caregivers explained by patient and caregiver factors across all the models was rather small (adjusted R2 = 19.3% for the Mental Composite Score, 5.2% for Physical Composite Score). Conclusion: Caregivers of EOD patients had worse mental health than LOD caregivers probably because individual with EOD have more behavioural disturbances. This reinforces the indispensable role of managing behavioural problems when caring for a family member with dementia, especially for EOD. HRQOL ideally needs to be assessed based on self‐report rather than inferences from indirect data such as the subjective caregiver burden.
Background: Sleep disturbance is an issue reported by caregivers. Waking at night is a feature of dementia and by proxy, sleep disturbance among caregivers is reported to be high. Little is known about the characteristics of dementia caregivers' sleep and the factors that may influence sleep disruption. The purpose of this study was to investigate the sleep characteristics and disturbances of Australian caregivers of a person living with dementia. In addition, it evaluated the psychological wellbeing of caregivers by evaluating associations between mood and sleep in this population. Methods: This study used a cross-sectional, descriptive, correlation design. Participants were recruited with the assistance of Alzheimer's Australia, Dementia Australia and targeted social media advertising. In total, 104 adult, primary, informal caregivers of people with dementia participated, completing a questionnaire on demographic characteristics, the Depression, Anxiety and Stress Scale (DASS-21) and the Pittsburgh Sleep Quality Index (PSQI). Results: In this study, 76% of caregivers were female who had been caring for someone living with dementia on average for 4.8 years. 44% of participants had two or more co-morbidities namely cardiovascular disease, osteoarthritis and diabetes. 94% of participants were poor sleepers with 84% with difficulty initiating sleep and 72% reporting having difficulty maintaining sleep. Overall, psychological distress was common with high levels of moderate to severe depression, anxiety and stress. Global PSQI scores were significantly positively associated with depression and anxiety, with the strongest correlation seen with stress scores. Depression scores were also moderately associated with daytime dysfunction. Stress was identified as a significant predictor of overall sleep quality. Conclusions: Sleep problems are common within the population of dementia caregivers. Due to the nature and duration of caregiving and the progression of dementia of the care recipient, there is the potential for a decline in the caregivers' mental and physical health. Caregivers of those living with dementia are more likely to have comorbidities, depression, anxiety and stress. Sleep quality is correlated with emotional distress in dementia caregivers although the direction of this association is unclear. Therefore, sleep and psychological wellbeing may be intertwined, with improvements in one aspect resulting in a positive impact in the other.
Background: Due to the progressive nature of dementia, it is important to understand links between disease severity and health-related outcomes. The aim of this study is to explore the relationship between disease severity and the quality of life (QoL) of people with dementia and their family carers using a number of disease-specific and generic measures. Methods: In the MODEM cohort study, three-hundred and seven people with clinically diagnosed dementia and their carers were recruited on a quota basis to provide equal numbers of people with mild (standardised Mini-Mental State Examination (sMMSE), n = 110), moderate (sMMSE 10-19, n = 100), and severe (sMMSE 0-9, n = 97) cognitive impairment. A series of multiple regression models were created to understand the associations between dementia severity and the QoL of people with dementia and the QoL of their carers. QoL was measured using self- (DEMQOL, EQ-5D, CASP-19) and proxy-reports (DEMQOL-Proxy, EQ-5D) of disease-specific and generic QoL of the person with dementia. Carer generic QoL was measured by self-report (EQ-5D, SF-12). Results: Disease severity, as measured by the sMMSE, was not significantly associated with the QoL of the person with dementia or the carer (p > 0.05), even after controlling for potential confounding variables for self-reported instruments. Proxy measures (rated by the carer) differed systematically in that there were small, but statistically significant proportions of the variance of QoL was explained by severity of cognitive impairment in multiple adjusted models. We also found little in the way of statistically significant relationships between the QoL of people with dementia and that of their carers except between DEMQOL-Proxy scores and the carer EQ-5D scores and carer SF-12 mental sub-scores. Conclusions: The data generated supports the somewhat counterintuitive argument that severity of cognitive impairment (and therefore severity of dementia) is not associated with lower QoL for the person with dementia when self-report measures are used. However, in absolute terms, as judged by the variance in the multivariate models, it is clear that the contribution of dementia severity to the QoL of people with dementia is minimal whatever the measurement used, be it self- or proxy-rated, or disease-specific or generic.
Background: Diabetes and Alzheimer disease and related dementias (ADRD) are the seventh and sixth leading causes of death in the United States, respectively, and they coexist in many older adults. Caring for a loved one with both ADRD and diabetes is challenging and burdensome.Objective: This study aims to explore diabetes-related topics in the Alzheimer's Association ALZConnected caregiver forum by family caregivers of persons living with ADRD. Methods: User posts on the Alzheimer's Association ALZConnected caregiver forum were extracted. A total of 528 posts related to diabetes were included in the analysis. Of the users who generated the 528 posts, approximately 96.1% (275/286) were relatives of the care recipient with ADRD (eg, child, grandchild, spouse, sibling, or unspecified relative). Two researchers analyzed the data independently using thematic analysis. Any divergence was discussed among the research team, and an agreement was reached with a senior researcher's input as deemed necessary. Results: Thematic analysis revealed 7 key themes. The results showed that comorbidities of ADRD were common topics of discussions among family caregivers. Diabetes management in ADRD challenged family caregivers. Family caregivers might neglect their own health care because of the caring burden, and they reported poor health outcomes and reduced quality of life. The online forum provided a platform for family caregivers to seek support in their attempts to learn more about how to manage the ADRD of their care recipients and seek support for managing their own lives as caregivers. Conclusions: The ALZConnected forum provided a platform for caregivers to seek informational and emotional support for caring for persons living with ADRD and diabetes. The overwhelming burdens with these two health conditions were apparent for both caregivers and care recipients based on discussions from the online forum. Studies are urgently needed to provide practical guidelines and interventions for diabetes management in individuals with diabetes and ADRD. Future studies to explore delivering diabetes management interventions through online communities in caregivers and their care recipients with ADRD and diabetes are warranted.
Purpose: To develop and evaluate a measurement scale for multi-domain assessment of the quality of life of family caregivers of persons with dementia (PWD) in Singapore, a multi-ethic society in South-East Asia where English is the lingua franca.; Methods: Items from the Singapore Caregiver Quality of Life Scale (SCQOLS), which was originally developed in the context of advanced cancers, were adopted as candidate items. Furthermore, a multi-disciplinary panel reviewed dementia-specific caregiver quality of life scales to identified items not covered in SCQOLS for inclusion as candidate items. A pilot study of 31 family caregivers of PWD was conducted to solicit inputs on candidate items; 102 family caregivers of PWD were surveyed for evaluation of the scale's measurement properties.; Results: Factor analysis confirmed a 5-domain structure of the 63 candidate items. The Root Mean Square Error of Approximation was 0.056 and Comparative Fit Index was 0.928. Convergent validity of the total and domain scores was demonstrated in terms of correlation with the Brief Assessment Scale for Caregivers and its sub-scales. The scores also showed an expected pattern of correlation with hours spent on caregiving per week. Known-group validity was demonstrated by differences in mean scores between functional staging groups. Cronbach's alpha of the total and domain scores ranged from 0.89 to 0.95. Test-retest reliability (intraclass correlation coefficient) ranged from 0.77 to 0.92.; Conclusions: The Singapore Caregiver Quality of Life Scale - Dementia (SCQOLS-D) is a quality of life measurement scale for family caregivers of persons with dementia that is valid and reliable.
To investigate the cross-sectional associations between depression in people with dementia and both caregiver burden and quality of life in 8 European countries, and to test these associations compared with the presence of other neuropsychiatric symptoms. Cross-sectional study. In total, 1223 dyads comprised of informal caregivers and people with dementia living in a community-dwelling setting, recruited from the Right Time Place Care study, a cohort survey from 8 European countries. To test the associations between depression (according to the Cornell Scale for Depression in Dementia) and informal caregiver burden (defined by the Zarit scale and hours of supervision in terms of Resource Utilization in Dementia), distress (defined by the Neuropsychiatric Inventory Questionnaire distress score), and quality of life (according to the visual analogue scale and 12-item General Health Questionnaire). Linear regressions showed an association between depression and main outcomes (Zarit scale: β 3.7; P =.001; hours of supervision: β 1.7; P =.004; Neuropsychiatric Inventory Questionnaire distress score: β 1.2; P =.002). A similar association was found concerning psychological and overall well-being (12-item General Health Questionnaire: β 1.8; P <.001; Euroqol Visual Analogue Scale: β −4.1; P =.003). Both associations remained significant despite the presence of other NPS and after adjusting for confounders. Further studies are needed to assess whether providing tailored strategies for optimizing diagnosis and managing of depression in people with dementia might improve caregiver quality of life and reduce their burden in the community-dwelling setting.
This forum expands and reframes the lens of dementia caregiving research among diverse racial and ethnic groups to better understand the unique needs, stressors, and strengths of multicultural and racial-ethnic family caregivers in the United States. By providing more diverse and inclusive knowledge on caregiving to older adults in the United States, we can create a new path forward with regards to caregiving research. Throughout the article, major questions and answers are supported by critiquing some of the caregiving literature. Discussions are provided to help create inclusive ways of conceptualizing caregiving research and using methodological approaches to reflect the diversity of caregivers and care recipients in the United States. Expanding and reframing the conceptual and methodological lens of diversity, inclusivity and intersectionality can provide evidence to support effective policy, practice, and care in addressing the needs of diverse groups of caregivers and older adults living with dementia.
Sustaining informal care-giving for people living with dementia (PWD) is a common objective of societies worldwide. Families can contribute substantially to the support of care-giving relatives. However, a deeper understanding of the impact of informal care-giving for PWD on family life is needed. Interviewing of multiple family network members-in addition to the primary carer-provides more insight into familial contexts of care-giving. This pilot study aims to explore how informal carers reconcile dementia care-giving and family life from a family network perspective. Therefore, we conducted 14 narrative interviews with family carers from seven care-giving networks in Germany, which we interpreted using the documentary method. The yielded relational typology describes five types of family carers of PWD. These types reflect the way the families deal with dementia care-giving based on the interrelation between relationship quality and the distribution of care-giving tasks within the family. Depending on the constellation of this interrelationship, family carers either experience care as a joint project, as co-operation with external support or within the family, as disappointment or as a predicament without alternatives. Finally, if the care-giving tasks are not shared, or if the distribution is perceived as unequal, relationship break downs can occur, especially in family ties that are already strained. However, joint care-giving and strong ties can also bring the family closer together and enhance care experiences. Care professionals and social workers should be aware of the family network of dementia carers and support the development of a sense of family unity. This can contribute to positive care experiences among family carers and thus increase the maintenance of informal dementia care.
Context Symptom management is essential in the end-of-life care of long-term care facility residents. Objectives To study discrepancies and possible associated factors in staff and family carers' symptom assessment scores for residents in the last week of life. Methods A postmortem survey in Belgium, The Netherlands, and Finland: staff and family carers completed the End-of-Life in Dementia-Comfort Assessment in Dying scale, rating 14 symptoms on a one-point to three-point scale. Higher scores reflect better comfort. We calculated mean paired differences in symptom, subscale, and total scores at a group level and inter-rater agreement and percentage of perfect agreement at a resident level. Results Mean staff scores significantly reflected better comfort than those of family carers for the total End-of-Life in Dementia-Comfort Assessment in Dying (31.61 vs. 29.81; P < 0.001) and the physical distress (8.64 vs. 7.62; P < 0.001) and dying symptoms (8.95 vs. 8.25; P < 0.001) subscales. No significant differences were found for emotional distress and well-being. The largest discrepancies were found for gurgling, discomfort, restlessness, and choking for which staff answered not at all, whereas the family carer answered a lot, in respectively, 9.5%, 7.3%, 6.7%, and 6.1% of cases. Inter-rater agreement κ ranged from 0.106 to 0.204, the extent of perfect agreement from 40.8 for lack of serenity to 68.7% for crying. Conclusion There is a need for improved communication between staff and family and discussion about symptom burden in the dying phase in long-term care facilities.
Advance care planning in young-onset dementia largely remains a blind spot within current literature. This study aimed to explore the engagement in and the conceptualization of advance care planning from the perspective of family caregivers of persons with young-onset dementia and to identify potential similarities and differences in this area between American and Belgian persons with young-onset dementia and their family caregivers. An exploratory qualitative study. We purposively sampled adult family caregivers of persons with young-onset dementia; our respondents were 13 American and 15 Belgian caregivers with varying familial relationships to the patient. We conducted 28 semi-structured interviews, using the same interview guide for American and Belgian respondents. Verbatim transcripts were analysed through the method of constant comparative analysis. Important similarities between American and Belgian respondents were restricted knowledge of advance care planning, limited communication about advance directives, and their recommendation for professionals to timely initiate advance care planning. Major differences were attention paid to those end-of-life decisions depicted in the legislature of their respective countries, American caregivers placed higher emphasis on financial planning than their Belgian peers, and, in the case of consulting professionals for advance directives, American caregivers turned to lawyers, whereas Belgian caregivers relied on physicians. Specific nuances and challenges in terms of advance care planning in young-onset dementia arise from a particular societal and legal context on the one hand, and from patients' and caregivers' younger age on the other. Professionals' awareness of and responsiveness to these specificities could facilitate the advance care planning process. Based on our interpretation of results, several recommendations for practice and policy are made.
Caring for a family member with Alzheimer's disease (AD) or a related dementia is stressful, and this may especially be the case for racial/ethnic minority caregivers. This study examined the feasibility and acceptability of a pilot intervention for Vietnamese American dementia caregivers. A secondary, exploratory aim was to examine post-intervention effects on AD knowledge and psychosocial outcomes. Of the 87 individuals contacted, 32 met inclusion criteria. Of this number, 14 enrolled in the study with 11 caregivers completing the intervention, and 10 of the 11 completing 3-month follow-up data. Caregivers provided positive feedback on the intervention and had higher scores on AD knowledge and self-efficacy in seeking support services post-intervention, with the effect on self-efficacy maintained at 3-month follow-up. Recruitment for the intervention was difficult; however, once caregivers came to the first session, they were engaged and found the classes informative. Recommendations for a future intervention are discussed.
This study characterized emotional connections between largely female caregivers and female care recipients with dementia living in nursing homes with the research question: How does interpersonal communication between family caregivers and older adults with dementia convey enacted emotional support? Ten dyads (8 with at least one female) of regularly-involved family caregivers (7 female; 3 male) and their relatives with dementia (5 female; 5 male) were videotaped. Qualitatively, three themes emerged: 1) distinct conversational topics, 2) shared physical proximity and silence, and 3) catalysts for natural interaction. These findings may help improve the quality of life of these predominantly female dyads.
Aims To explore the perspectives of those involved in co‐designing a mobile application with people with dementia and their carers. Background People with dementia suffer physical and psychological problems as their illness progresses and require a range of health and social care services to meet their needs. Mobile applications are being developed to support individuals to manage long‐term conditions, but patients and carers are not always involved in designing this technology, which can lead to poor quality health apps. A digital initiative was launched to involve people with dementia and their carers in creating a mobile app that would support communication and enable them to share memories together. Design An exploratory, descriptive approach was used. Methods In‐depth interviews with people with dementia, their carers, and others involved in co‐creating a mobile health application were conducted. Data analysis was undertaken using the framework approach. Results The views of people with dementia, their carers, and project staff were similar regarding the complexity of the co‐design process, and the value the mobile app had for people with dementia and their families. Being involved in co‐production seemed to have numerous benefits for people with dementia and their carers as they gained new knowledge and skills, friendships, and a sense of achievement in creating a unique app that would benefit many people. The app also appeared useful in stimulating memory and cognitive function, aiding communication, and providing a sense of normalcy for people living with dementia and their carers. Conclusion Mobile health applications can facilitate interaction between people with dementia and their carer network that could improve their quality of life. Further research on which co‐design process is best suited to people with dementia and whether technology created via this participatory method is more effective or not in improving health outcomes is required.Implications for practiceNurses should have knowledge of and education about technology and how it can promote health and wellbeing of persons with dementia. Nurses who care for people with dementia and their families should support them in taking part in or leading the design of technologies that meet their needs. Participatory design methods should be taught in nursing education so the profession can provide guidance to patients and their families on co‐creating health products and services
Background: Due to demographic change within an aging population as announced by the WHO, the involvement of caregivers is essential. Caregivers are required to change their roles within the family unit. Such life transitions experienced by caregivers to people confronted with dementia-type pathologies are sometimes difficult, necessitating the acquisition and development of certain skills. Few studies have shown that caregivers develop specific and essential skills to promote quality care and safety. To characterize their skills, there is a need to identify the abilities, knowledge, resources, obstacles and constraints that contribute to caregivers' transitions. The research question for this study was: What skills do caregivers use to care for their loved one with dementia? Methods: Qualitative observational research based on the epistemological paradigm of socioconstructivist knowledge was conducted. The study was carried out in the canton of Geneva and recruitment was carried out through the participation of the Alzheimer's association and the association for the support and assistance of elderly people in medical and social institutions and their families (APAF). Observations and semi-structured interviews were conducted in the homes of 14 family carers caring for their loved one with dementia. The observations were transcribed on observation grids and the interviews were recorded. Subsequently, according to the classic distinction of Denzin (Interpretive interractionism, 2001), we analysed the observation notes and verbatims, then as recommended by Miles et al. (Qualitative data analysis: a methods sourcebook, 2014), two researchers triangulated the results. Results: The results identified five types of situations regularly experienced by caregivers. The study characterized 11 skills that caregivers use to cope with their daily lives. The learning process and maladaptive behaviours in caring for their loved ones with dementia were also highlighted. Conclusion: This study was able to point out that today's caregivers have developed more competency than their predecessors. This evolution can be explained by new paradigms of care requiring caregivers to be more involved. Although some caregivers need training, others through their experiences can act upon and provide knowledge. To improve the quality and safety of care for people with dementia, this expertise can be the subject of partnerships between caregivers and health care staff.
Objectives We provide national estimates of caregiving networks for older adults with and without dementia and examine how these networks develop over time. Most prior research has focused on primary caregivers and rarely on change over time. Method We identify a cohort of older adults continuously followed in the National Health and Aging Trends Study between 2011 and 2015 and receiving help from family members or unpaid caregivers in 2015 (n = 1,288). We examine differences by dementia status in network size, types of assistance and task sharing, and composition—differentiating between "specialist" and "generalist" caregivers helping in one versus multiple activity domains. Multinomial regression is used to estimate change over time in network task sharing and composition. Results In 2015, older adults with dementia had larger caregiving networks involving more task sharing than those without dementia and more often relied on generalist caregivers, especially the subset assisting with medical, household, and mobility or self-care activities. Uniformly greater reliance over time on these more intensely engaged generalist caregivers chiefly accounts for larger dementia networks. Discussion Findings lend support to the need for caregiver training on managing multiple task domains and—for dementia caregivers in particular—task-sharing skills. More generally, the design of new approaches to better support older adults and their caregivers should consider the complexity, heterogeneity, and change over time in caregiving networks.
Background: The population aging together with an increased incidence of Alzheimer's disease (AD) should also be accompanied by a growing interest in healthcare research. Therefore, this study examines the nature of the caregiver's work, its mental and physical demands, experience and questions, and the relationship between the person with AD, the caregiver, and family members. Methods: As social media has become the place where people share family situations, a Facebook private discussion group of caregivers was chosen as the analytical data source. The study documented the daily-life situations of one-hundred dyads based on 2110 posts published during a six-month or longer period. A content analysis classified communication into 35 categories of basic, instrumental, and extended activities of daily livings (ADLs) and newly designed caregiver's daily issues (CDIs). Results: The frequently discussed topics were related to exhaustion and feelings of "giving up" by caregivers and interpersonal communication and help from family members. The highest support was found for the topics of aging and dying and family events. Conclusion : The communications of caregivers were diverse and rather associated with co-occupational ADLs and CDIs than basic or instrumental ADLs. The support of the group was mainly provided in coping with fundamental life changes.
Objectives: Death preparedness amongst family caregivers (CG) is a valuable and measurable concept. Preparedness predicts CG outcomes in bereavement and is modifiable through a palliative approach which includes advance care planning (ACP) interventions. Improving death preparedness is important for CGs of persons with dementia (PwD) whom are more likely to develop negative outcomes in bereavement, and experience less than adequate palliative care. However, the adequacy of existing tools to measure death preparedness in CGs of PwD is unknown, which limits intervention design and prospective evaluation of ACP effectiveness. Methods: We conducted a review and evaluation of existing tools measuring the attribute domains and traits of CG death preparedness. Literature was searched for articles describing caregiving at end of life (EOL). Measurement tools were extracted, screened for inclusion criteria, and data extracted regarding: conceptual basis, population of development, and psychometrics. Tool content was compared to preparedness domains/traits to assess congruency and evaluate the adequacy of tools as measures of death preparedness for CGs of PwD. Results: Authors extracted 569 tools from articles, retaining seven tools for evaluation. The majority of tools, n = 5 (70%) did not sample all preparedness domains/traits. Few tools had items specific to EOL; only one tool had a specific item questioning CG preparedness for death, and only one tool had items specific to dementia. Conclusion: Limitations in existing tools suggest they are not adequate measures of death preparedness for CGs of PwD. Consequently, the authors are currently developing a questionnaire to be titled, 'Caring Ahead' for this purpose.
This study aimed to evaluate caregiver burden and quality of life (QoL) and their predictors in family caregivers of dementia patients. A descriptive cross-sectional survey was carried out with a sample of 102 patients and their family caregivers. The Caregiver Burden Inventory (CBI) and Short Form-12 (SF-12) were used to collect data. CBI mean score was 37.97 ± 21.30. Mean scores of SF-12 sub-domains varied between 36.02 and 77.94 and were significantly lower as compared to normative means of the general population, excluding only the physical health subdomain. Among several patient and caregiver-related correlations, the number of medications and worse cognitive function of the patient, caregiver's age and having limited space at home were found as predictors of burden, whereas caregiver's chronic disease and having a limited space were predictors of QoL. Also, the burden and QoL were correlated. This study demonstrated a high burden and low QoL in dementia caregivers. In societies where caregivers are mostly informal such as that in Turkey, supportive systems should be established.
Background: Globally, family members account for the main source of caregiving of persons with dementia living at home. Providing care to family members with dementia often has negative health consequences for caregivers such as stress, depression and low quality of life. Yet, formal support for family caregivers (FCs) is limited. Telehealth technology has the potential to provide health care and social support to FCs. This study aims to assess the effectiveness of providing support by healthcare professionals (HPs) through a mobile app in reducing stress, depressive symptoms and loneliness, and improving mental health and quality of life of FCs of persons with dementia. Methods: Using a pragmatic intervention design, this study will use pre- and post-intervention assessment to evaluate the effectiveness of the proposed intervention in a sample of 78 FCs of persons with dementia (PWD). The intervention will be implemented by approximately 5 HPs specialized in dementia care based in the municipalities in Sweden. The main thrust of the intervention is to provide professional support, with help of an interactive mobile app, to family members in their caregiving role for PWDs. Qualitative interviews with HPs and FCs form the groundwork of the development of the mobile app. By using the app on smart phone or tablet, the FC, in groups of 8-10, will communicate with peers and a HP exchanging ideas on how to deal with PWD's behavioral and cognitive changes and get support. They will also be able to discuss stressful events and access mindfulness exercises focused on themselves. Quantitative data will be collected before and at three time points after the 8-week intervention to assess changes in the health outcomes of the FCs. In-depth interviews will be conducted after the intervention to capture the experiences of FCs and HPs regarding the ease of use and acceptability of the app.Discussion: This tailor-made mobile app has the high potential to be a practical platform for supporting FCs to alleviate stress and improve mental health irrespective of distance to the nearest health care or social service center.Trial Registration: ISRCTN, ISRCTN46137262 . Registered 10 October 2019.
Objectives: To illustrate specific psychosocial interventions aimed at improving self-efficacy among family caregivers enrolled in the Care Ecosystem, a model of navigated care designed to support persons with dementia and their primary caregivers. Enrolled family caregivers work with unlicensed care team navigators who are trained in dementia care and provide information, linkages to community resources, and emotional support by phone and email. Method: We conducted focus groups and interviews with the care team navigators to identify the approaches they used to target caregiver self-efficacy. We assessed mean self-efficacy scores in a sample of 780 family caregivers and selected three exemplary cases in which the caregivers had low self-efficacy scores at baseline with significantly higher scores after six months of participation in the Care Ecosystem intervention. Results: Multiple psychosocial strategies were utilized by care team navigators working with patients with dementia and their family caregivers. Using thematic coding we identified three categories of Care Team Navigator intervention: emotional, informational, and instrumental support. These are consistent with a psychosocial approach to building self-efficacy. Discussion: Self-efficacy represents a family caregiver's knowledge and preparedness in managing the challenges of care. Psychosocial support shows benefit in improving caregiver self-efficacy that in turn, may positively influence caregiver health and well-being. The findings in this manuscript demonstrate how a model of navigated care can positively impact self-efficacy among dementia family caregivers.
This report describes the evaluation of the psychometric and clinimetric properties of nine self-report measures completed by informal care partners of individuals with mild cognitive impairment or dementia in Parkinson's disease and dementia with Lewy bodies. One hundred thirty-six care partners completed measures on relationship satisfaction, burden, stress, mood, resilience, health, quality of life, and feelings related to care provision. Psychometric properties, such as internal consistency, convergent validity, floor and ceiling effects, completion rate and data missingness, as well as clinimetric properties, such as time to administer, ease of scoring, readability and availability of the scales, were examined. Additionally, the design of the measure development studies was assessed with the 2018 COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) Risk of Bias checklist. Participants were mostly married women (>85%) with a mean age of 69.4 years. The methodological quality of the design of all measure development studies was "inadequate." Five widely applied measures (Zarit Burden Interview, Hospital Anxiety and Depression Scale, Short Form 12 Health Survey, Relatives' Stress Scale, and EuroQoL-5D) and two less researched instruments (Brief Resilience Scale and Relationship Satisfaction Scale) had high internal consistency and completion rates, moderate to strong convergent validity, low missingness and floor effects, and excellent clinical utility ratings. Two scales (Dyadic Relationship Scale and Family Caregiving Role) received poor psychometric ratings, and their usage among informal care partners is not recommended. In conclusion, well-validated and widely used measures received strong psychometric and clinimetric ratings. Future studies are required to determine the most reliable, valid and robust caregiver-reported measures.
Family caregivers of people with dementia often must make crucial medical decisions for them that may increase the burden of care experienced. Although undertaking Advance Care Planning (ACP) might reduce their decision-making burden, completion rates remain very low. The present study aimed to explore the common beliefs of family caregivers of people with dementia about undertaking ACP for themselves. A qualitative study was conducted, using a semi-structured questionnaire based on the Theory of Planned Behavior. Face-to-face interviews were conducted with a convenience sample of 20 family caregivers of people with dementia in Israel. The behavioral beliefs expressed by the participants referred to the dual benefits of ACP, for the person who will not be able to make medical decisions at the end of life and for themselves. Participants mentioned that family members and friends were the main persons with whom they would consult in making decisions regarding ACP. Personal characteristics and instrumental factors were mentioned as enablers and barriers to undertaking ACP. Findings from the study provide an important basis for expanding research and for developing interventions that can encourage undertaking ACP.
• BA had a moderate effect on reducing depression in family dementia caregivers. • Other psychological and cardiovascular health can be improved by BA. • Maintaining a log and subsequent checks might enhance the effectiveness of BA. • More studies of BA are needed in family dementia caregivers.
The current study aims to investigate the effectiveness of behavioral activation (BA) for family dementia caregivers. A systematic literature search was conducted through PubMed, Medline, CINAHL, Cochrane, Embase and PsycINFO for studies published from March 1988 to September 2019. Standardized mean differences (SMDs) were combined to synthesize pooled effect measures using random effects. The review was based on ten randomized controlled trials. Depression was significantly reduced after participants received BA (n = 9; 786 participants; SMD = −0.69; 95% CI: −1.12 to −0.25; p = 0.002). BA also has a positive impact on other areas of psychological health (e.g., self-efficacy, anxiety, and distress) and physical health (e.g., interleukin-6) in family dementia caregivers. In conclusion, BA not only has a moderate effect on reducing depression but also has the potential to improve other areas of psychological and cardiovascular health in family caregivers. However, more interventional studies of BA for family dementia caregivers are needed.
In its mission to protect the personal data of European Union (EU) citizens, the reach of the General Data Protection Regulation (GDPR) extends into the research activities traditionally supervised and approved by university institutional review and ethics boards. This article discusses how transnational research for an online support intervention for family carers of people with dementia was obstructed by a particularly restrictive interpretation of the 2018 GDPR. Contested issues discussed include privacy, consent, the balance between risks and benefits, and the rights of family carers.
Objectives: This study aimed to compare informal caregivers/dementia caregivers to non-caregivers regarding alcohol consumption, smoking behavior, obesity, and insufficient physical activity and to identify caregiving-related factors (caregiving intensity, length of caregiving, relationship to the care recipient, and type of caregiving task) which are associated with behavioral risk factors in caregivers/dementia caregivers.; Methods: Using cross-sectional data from the Behavioral Risk Factor Surveillance System, we performed the statistical analyses applying logistic regression models and accounted for confounding using the entropy balancing approach.; Results: For caregivers (n = 12,044), the odds of overweight/obesity and smoking were higher (OR = 1.14/1.34, p < 0.05) and the odds of binge drinking and insufficient physical activity were lower (OR = 0.86/0.83, p < 0.05) than for non-caregivers (n = 45,925). For dementia caregivers, results point in the same direction. Caregiving-related variables tend to influence the likelihood of behavioral risk factors, but depending on the kind of factor considered, in different directions.; Conclusions: Being a caregiver is associated with risky and health-promoting behavior. However, the effects are relatively low. Future studies should study potential pathways between caregiving characteristics, psychological impacts of caregiving, health behavior, and mental or physical health.
Background Impacts of social isolation measures imposed by COVID-19 Pandemic on mental health and quality of life of older adults living with dementia and their caregivers remain unexplored. Studies have shown that psychoeducational and psychosocial interventions can manage behavioral and psychological symptoms in dementia (BPSD) and reduce the emotional burden on family members when applied in home-setting scenarios. Method a comprehensive systematic review of useful interventions for easing the BPSD burden in patients with dementia (PwD) and their caregivers in the context of COVID-19 quarantine was performed from January 2010 to March 2020. Results From a total of 187 articles retrieved from electronic databases (MEDLINE, LILACS, Cochrane and SCOPUS), 43 studies were eligible for this review. Most of the psychosocial and psychoeducational interventions described were person-centered strategies based on the cognitive-behavioral approach or informational tools to enhance care providers' knowledge of dementia. Most studies achieved successful results in handling BPSD and mood-anxiety symptoms of care providers, contributing to an overall improvement in dyad life quality. Conclusion Evidence from the last few years suggest that low-cost techniques, tailored to the dyad well-being, with increasing use of technology through friendly online platforms and application robots, can be an alternative to conventional assistance during COVID-19 Pandemic. Nevertheless, the world's current experience regarding the duration of the COVID-19 Pandemic and its effects on the cognition, behavior, and life quality of PwD will demand research on preventive and protective factors of dementia and the pursue of efficient interventions in different scenarios.
Objective: To describe the experiences and needs of caregivers of persons with dementia during the COVID-19 pandemic and lockdown in a city in India. Design: Qualitative study using a telephonic semistructured interview. Setting: A specialist geriatric outpatient mental health service based in a nongovernmental organization in Chennai, India. Participants: A purposive sampling of family members of persons with dementia registered in the database and seen within the previous 6 months. Results: Thirty-one caregivers participated. Thematic analysis of the data showed two sets of issues that the caregivers of persons with dementia faced in their experiences during the pandemic. The first set was unique to the caregivers that directly related to their caregiving role, while the second set did not relate directly to their caregiving role. These two sets also appeared to have a two-way interaction influencing each other. These issues generated needs, some of which required immediate support while others required longer-term support. The caregivers suggested several methods, such as use of video-consultations, telephone-based support and clinic-based in-person visits to meet their needs. They also wanted more services postpandemic. Conclusion: Caregivers of persons with dementia had multiple needs during the pandemic. Supporting them during these times require a pragmatic multilayered approach. Systemic changes, policies and frameworks, increased awareness, use of technology, and better access to health are necessary.
While the burden of caring for people living with dementia has been well documented, considerably less is known about how carers transition into post-care life. This study aimed to understand the experiences of primary family care-givers of people with dementia after the person with dementia has died. A specific focus of the research was understanding the barriers to transitioning into a positive post-care life, and facilitators that help sustain carers as they move forward after their care journey has ended. A qualitative exploratory, descriptive study was undertaken with nine primary carers for a family member who died with dementia (five spouses and four adult children). Semi-structured face-to-face or telephone interviews were conducted with carers between July and August 2016. Interview transcripts were analysed using a thematic approach. A number of factors that can act as barriers or facilitators to transition for carers were identified. Contextualising loss, restructuring identity, psychological health issues and the influence of social attitudes seemed to have a strong influence on carer outcomes. The findings highlight the need for further systematic social and informational support for carers to moderate post-care trajectories and improve carer transition.
Objectives: We examined how caregivers who had cared for a relative at end of life (EoL) wished to be cared for in the event that they experienced advanced dementia or physical disability in the future, and what factors influenced their preferences for EoL care. Methods: In this mixed-methods study, 83 participants, recruited from multiple sources in Israel, were interviewed concerning socio-demographic factors, health status, past experience with EoL, preference for extension of life vs. quality of life (QoL), willingness to be dependent on others, and preferences for EoL care. Results: In case of advanced dementia, 58% preferred euthanasia or suicide; around a third chose those for physical disability. Care by family members was the least desired form of care in the advanced dementia scenario, although more desirable than institutional care in the physical disability scenario. QoL was rated as the highest factor impacting preferences for EoL care. Men demonstrated a higher preference than women for extension of life over QoL. Conclusion: Our study points to the need for society to consider solutions to the request of participants to reject the type of EoL experienced by their relatives. Those solutions include investing in improving the quality of life at the end of life, and offering alternatives such as euthanasia, which a large proportion of our participants found ethically and medically appropriate within the current system of care in the event of severe physical disability, and more so in the event of advanced dementia. [
Background: The negative interactions between Alzheimer's disease (AD) patients and their caregivers may provoke criticism, hostility, and emotional overinvolvement that characterise highly expressed emotion (EE) attitudes. In this study, we hypothesised that affective temperament traits of AD caregivers are related to their high EE levels independent from other patient and caregiver characteristics. Methods: Eighty AD patients were assessed through Clinical Dementia Rating Scale (CDR), and Mini‐Mental State Examination. Expressed Emotion Scale (EES), Temperament Evaluation of Memphis, Pisa, Paris and San Diego auto‐questionnaire, and Hamilton Depression Rating Scale were applied to the caregivers. The high (n = 41) and low EE caregivers (n = 39) were compared with respect to some sociodemographic and clinical characteristics of the patients and caregivers, and affective temperament traits of caregivers. The associations of caregiver EES scores with multiple variables related to patients and caregivers were examined by Pearson correlation tests. We performed multiple linear regression analysis to determine the possible predictors of total EES scores. Results: High EE caregivers had significantly higher depressive, cyclothymic, and anxious temperament traits than in low EE subjects. A weak positive correlation was found between the total EES scores and Personal Care scores of CDR. Home and hobbies subscale scores of CDR had a moderately significant positive correlation with total EES scores. There was also moderate significant positive correlations between total EE scores and depressive, cyclothymic, anxious, and irritable temperament traits. Linear regression analysis indicated that depressive temperament significantly predicted the high levels of caregiver EE. Conclusion: These findings suggest that caregivers' depressive temperament is predominantly related to their EE levels even after controlling for the severity of AD, and lower educational level of caregivers. Our results may provide evidence that high EE might be a reflection of caregivers' depressive temperament traits, in accordance with the trait hypothesis.
Persons with dementia are at high risk for loss of decision-making ability due to increased cognitive decline as the disease progresses. Participation in advance care planning (ACP) discussions in the early stages of dementia is crucial for end-of-life (EoL) decision-making to ensure quality of EoL care. A lack of discussions about ACP and EoL care between persons with dementia and family caregivers (FCGs), can lead to decisional conflicts when persons with dementia are in the later stages of the disease. This study explored the effects of a family-centered ACP information intervention among persons with dementia and FCGs. The study was conducted in outpatient clinics in Taiwan. Participants were dyads (n = 40) consisting of persons diagnosed with mild cognitive impairment or mild dementia and their FCGs. A one-group, pretest–posttest, pre-experimental design was employed. The intervention was provided by an ACP-trained senior registered nurse and was guided by ACP manuals and family-centered strategies. Outcome data were collected with four structured questionnaires regarding knowledge of end-stage dementia treatment, knowledge of ACP, attitude towards ACP, and EoL decisional conflict about acceptance or refusal of cardiopulmonary resuscitation, ventilators, and tracheostomy. Paired t tests compared differences between pre-intervention data and 4-weeks' post-intervention data. The intervention resulted in significant improvements among persons with dementia and FCGs for knowledge of end-stage dementia treatment (p =.008 and p <.001, respectively), knowledge of ACP (both p <.001), and significant reductions in decisional conflicts (both p <.001). Scores for positive and negative attitude toward ACP did not change for persons with dementia; however, there was a reduction in negative attitude for FCGs (p =.001). Clinical care for persons with dementia should incorporate ACP interventions that provide knowledge about EoL dementia care using family-centered care strategies that facilitate regular and continuous communication between FCGs, persons with dementia, and medical personnel to reduce decisional conflicts for EoL care.
Embedded pragmatic clinical trials (ePCTs) advance research on Alzheimer's disease/Alzheimer's disease and related dementias (AD/ADRD) in real‐world contexts; however, health equity issues have not yet been fully considered, assessed, or integrated into ePCT designs. Health disparity populations may not be well represented in ePCTs without special efforts to identify and successfully recruit sites of care that serve larger numbers of these populations. The National Institute on Aging (NIA) Imbedded Pragmatic Alzheimer's disease (AD) and AD‐Related Dementias (AD/ADRD) Clinical Trials (IMPACT) Collaboratory's Health Equity Team will contribute to the overall mission of the collaboratory by developing and implementing strategies to address health equity in the conduct of ePCTs and ensure the collaboratory is a national resource for all Americans with dementia. As a first step toward meeting these goals, this article reviews what is currently known about the inclusion of health disparities populations of people living with dementia (PLWD) and their caregivers in ePCTs, highlights unique challenges related to health equity in the conduct of ePCTs, and suggests priority areas in the design and implementation of ePCTs to increase the awareness and avoidance of pitfalls that may perpetuate and magnify healthcare disparities.
Aim The caregiving situation differs according to the type of relationship between the patient caregiver, and among dementia caregivers, living with the person with dementia can contribute to caregiver distress. This study aimed to identify the predictors of caregiver distress based on caregiver profile: spouse, adult child living with the person with dementia, and adult child not living with the person with dementia. Method In total, 213 caregivers participated in this study. Their responses to questionnaires helped identify the positive and negative implications of the caregiving situation and the level of caregiver distress. The analyses consisted of univariate and multiple linear regression models using a forward method. Results Based on the standardized beta scores, the variables that are the most significant in predicting spouse caregiver distress are the impact on health and impact on schedule. The variable that is the most significant in predicting the distress of adult child caregivers living with the person with dementia is the impact on health. The variables that are the most significant in predicting the distress of adult child caregivers not living with the person with dementia are the impact on health, impact on schedule, and impact on finances. Conclusion The results make it possible to consider different approaches to providing support, including evaluating the health of all caregivers, giving guidance on accepting help and focusing caregivers' actions on their values for spouse caregivers, providing family mediation for adult child caregivers living with the person with dementia, and offering information and assistance on the available aids for adult child caregivers not living with the person with dementia.
The aim of this study was to evaluate the effects of stress-relief programs on positive aspects of caregiving and depression among caregivers of older people with dementia. A quasi-experimental design was employed. Participants in the experimental group received a 8-week period and 120 minutes each session cognitive-behavioral therapy. Participants in the control group received standard health education. Stress relief programs may alleviate depression and increase positive aspects of caregiving among family caregivers of older people with dementia. These findings will help health professionals to implement stress-relief strategies for family caregivers of older people with dementia, or to use those strategies to increase positive aspects of caregiving, or to alleviate depression in caregivers.
In this article, we explore the psychological process through which Vietnamese family caregivers adjust to their role as primary caregivers for their relatives with dementia. The study adopted a constructivist grounded theory approach to collect data with 30 face-to-face, semi-structured interviews with 20 self-identified primary caregivers of older adults with dementia in Vietnam. The core adjustment process, consisting of four stages (Experience, Acknowledgment, Experiment, and Acceptance [EAEA]), to caregiving role emerged from the data. The EAEA process highlights the importance of self-perception, self-perception focused strategies, and acceptance of caregivers and suggests an adjustment process to their "becoming self" in caregiving. The EAEA process was reflected in the transactional relationship with caregiver personal factors (demographic and relational characteristics with care recipients, personal beliefs in and commitments to caregiving, and personal history of caregiving and coping with past adversity) and structural factors (cultural values and norms, social support, and social pressure).
Background: The lockdown imposed in the UK on the 23rd of March and associated public health measures of social distancing are likely to have had a great impact on care provision. The aim of this study was to explore the decision-making processes of continued paid home care support for dementia in the time of COVID-19. Methods: Unpaid carers caring for a person living with dementia (PLWD) who were accessing paid home care before COVID-19 and residing in the UK were eligible to take part. Participants were interviewed over the phone and asked about their experiences of using paid home care services before and since COVID-19, and their decision-making processes of accessing paid home care since the outbreak and public health restrictions. Results: Fifteen unpaid carers, who were also accessing paid care support for the PLWD before COVID-19, were included in the analysis. Thematic analysis identified three overarching themes: (1) Risk; (2) Making difficult choices and risk management; and (3) Implications for unpaid carers. Many unpaid carers decided to discontinue paid carers entering the home due to the risk of infection, resulting in unpaid carers having to pick up the care hours to support the person living with dementia. Conclusions: This is the first study to report on the impact of COVID-19 on paid home care changes in dementia. Findings raise implications for providing better Personal Protective Equipment for paid carers, and to support unpaid carers better in their roles, with the pandemic likely to stay in place for the foreseeable future.
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
Objectives Accessing social care and social support services is key to support the well-being of people living with dementia (PLWD) and unpaid carers. COVID-19 has caused sudden closures or radical modifications of these services, and is resulting in prolonged self-isolation. The aim of this study was to explore the effects of COVID-19 related social care and support service changes and closures on the lives of PLWD and unpaid carers. Method PLWD and unpaid carers were interviewed via telephone in April 2020. Transcripts were analysed using thematic analysis. Demographic characteristics including household Index of Multiple Deprivation score and weekly hours of social support service usage before and since the COVID-19 outbreak were also collected. Paired samples t-tests was used to compare the mean of weekly hours of social support service usage before and since the outbreak. Results 50 semi-structured interviews were conducted with unpaid carers (n?=?42) and PLWD (n?=?8). There was a significant reduction in social support service usage since the outbreak. Thematic analysis identified three overarching themes: (1) Loss of control; (2) Uncertainty; (3) Adapting and having to adapt to the new normal. Carers and PLWD were greatly affected by the sudden removal of social support services, and concerned about when services would re-open. Carers were worried about whether the person they cared for would still be able to re-join social support services. Conclusions PLWD and carers need to receive specific practical and psychological support during the pandemic to support their well-being, which is severely affected by public health restrictions.
Background The present study investigated the factor structure of positive aspects of caregiving (PAC) scale among primary informal caregivers providing care to persons with dementia (PWD) in Singapore. Methods 282 primary informal caregivers of PWD were recruited from the Institute of Mental Health, and Changi General Hospital and administered the 9-item PAC scale. A confirmatory factor analyses (CFA) was conducted to test the model fit of the 9-item PAC proposed by the scale developer and multiple linear regression was used to investigate the significant socio-demographic correlates. Results CFA showed that the 2-factor structure including ‘Self-Affirmation’ and ‘Outlook on Life’ had an acceptable model fit. After controlling for confounding variables, Malay caregivers were associated with higher scores on PAC and ‘Self-Affirmation’ compared to caregivers of other ethnicities. Caregivers with Secondary or below education level had higher PAC and ‘Outlook on Life’ scores. Caregivers who had received formal training scored higher in PAC, ‘Self-Affirmation’ and ‘Outlook on Life’. Discussion The present study confirmed that the 2-factor structure of the 9-item PAC was suitable for informal caregivers of PWD in Singapore. The findings have important implications for locally available interventions to enhance caregiver’s psychological well-being and reduce burden of care.
Research Aim: This aim of this research is to explore how the experiences and needs of people with dementia and carers have changed throughout the COVID-19 pandemic and to understand how these needs can be appropriately addressed. Summary: This report presents the findings of national research undertaken by The Alzheimer Society of Ireland (ASI) between 8th and 26th June 2020, which explored how people with dementia and their carers are coping during COVID-19 and to understand their challenges and needs. This report follows on from a national survey carried out at the start of April 2020, when dementia services ceased operating and COVID-19 restrictions were imposed.
Aims: The study aims to analyse the tensions and the challenges of dementia care that are experienced by people with dementia and their family caregivers in China. Background: China has the largest dementia population in the world; however, dementia care services and related support services are still developing. Caring for a person with dementia is very challenging, as evidenced by many studies. As the majority of people with dementia are looked after by their family in their homes in China, it is very important to understand what people with dementia and their family caregivers are experiencing in the context of dementia care services that are in the process of developing. Design: Interpretative phenomenological analysis (IPA) was used. Method: Semi-structured individual interviews with 24 participants (10 people with dementia and 14 unrelated family caregivers) recruited from a mental health centre in Shandong Province. Findings: Three main themes emerged that highlighted unmet need: (a) Lack of support services, (b) Insufficient institutional care and (c) Social attitude and social stigma towards dementia. Conclusions: These themes reveal the challenges that the participants face in the context of dementia care services that are in the process of development in China; and how their lived experiences have been affected by the constraints of social support, public services, healthcare access, long-term care services and social stigma. Implications for practice: This study highlights the tensions that are identified by people with dementia and family caregivers. The research recommends that more support services would be beneficial for this group and would also enhance family support dementia care in China. Looking after an older family member is a culturally, socially and legally embodied norm in Chinese society, so it is important to address education for dementia awareness and the sustainability of family support care services in China by providing dementia services and resources to support both people with dementia and family caregivers.
Objectives: Family caregivers of people with dementia (PWD) often feel powerless and experience decreased well-being. Our aim was to develop an intervention program based on the caregiver empowerment model (CEM) and apply it with the Korean caregivers to evaluate its effects. Design and Sample: The study population comprised 115 family caregivers (experimental group, n = 35, control group 1, n = 40, control group 2, n = 40). Methods: Using an experimental design with two control groups. The experimental group received a 12-week program including intensive counseling, education, and telephone calls. The control group 1 (CG1) received usual service. The control group 2 (CG2) was provided with a handbook during the first week. A mixed-effects model was used to clarify longitudinal changes in participants' outcomes. Results: The experimental group showed significantly increased caregiving appraisal (effect size in CG1 = −7.25; CG2 = −5.63), caregiving attitude (CG1 = −21.47; CG2 = −17.79), self-efficacy (CG1 = −12.42; CG2 = −10.12), and well-being (CG1 = −4.33; CG2 = −2.35) after the program. Conclusions: The empowerment program can be used to promote family caregivers' positive adaptation and to help caregivers who care for PWD to effectively cope with their problems.
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.
Background: Dementia is a major public health concern associated with significant caregiver demands and there are technologies available to assist with caregiving. However, there is a paucity of information on caregiver needs and preferences for these technologies, particularly from a sex and gender perspective. To address this gap in research, the objectives of this study are to examine (1) the knowledge of technology, (2) perceived usefulness of technology, (3) feature preferences when installing and using technology and (4) sex and gender influences on technology needs and preferences among family caregivers of persons with dementia (PWD) across North America. Methods: A secondary analysis was conducted on an existing cross-sectional survey with family caregivers of PWDs. Respondents were recruited through the Alzheimer Society of Canada, the Victorian Order of Nurses and Adult Day Programs and other Canadian health care provision institutes. Descriptive statistics, bivariate and multivariate analyses were used to describe the study sample, uncover differences between male and female caregivers and examine sex and gender influences on caregivers' technology needs and preferences. Results: A total of 381 eligible responses were received over a nine month data collection period. The majority of respondents did not know much about and never used any technologies to assist with caregiving. "Being easy to install", "easy to learn how to use" and "cost" were identified as the most important features when purchasing and setting up technology, while "reliability" was identified as the most important feature when using technology. Most respondents were willing to pay up to $500 to acquire individual technologies. Controlling for other socio-demographic variables, female respondents were more likely to have some or more knowledge about technology for caregiving while male respondents were more willing to pay higher amounts for these technologies compared to their female counterparts. Conclusions: As one of the first studies of its kind, our findings represent a step towards the incorporation of sex and gender considerations such as cost and reliability in technology design and promotion for caregivers. Future efforts are warranted to establish an in-depth understanding of sex and gender influences in relation to other social and environmental factors..
Objectives Much is known about the demands of caregiving for persons with dementia (PWD) and its effects on family caregivers, however sex and gender aspects have received less attention. We synthesized the evidence on sex and gender distinctions in: (1) the caregiving burden and (2) the impact of caregiving on the physical and mental health of family caregivers of PWD. Design Systematic review. Data sources Medline, Embase, PsycINFO and Cumulative Index to Nursing and Allied Health Literature between January 2007 and October 2019 were searched. Eligibility criteria for selecting studies Included studies met the following criteria: (1) examine experiences and/or impacts of caregiving among family caregivers of individuals with any form of dementia; (2) report sex and/ or gender distribution of study population and/or report results stratified by sex and/or gender, and (3) include both male and female family caregivers. Data extraction and synthesis Two independent reviewers extracted the data and assessed risk of bias using the Critical Appraisal Skills Program checklist and National Institutes of Health Quality Assessment Tool for Observational Cohort and Cross-sectional Studies. Data were synthesized using a narrative synthesis approach. Results A total of 22 studies were included. Caregiving burden was measured using various methods. A majority of studies reported higher burden among females. All studies that did not report a sex and gender difference in caregiving burden accounted for confounders. Findings on sex and gender differences on physical and mental health conditions were inconsistent with most studies failing to account for confounders in their analyses. Conclusions Current evidence on sex and gender differences in caregiving burden, mental and physical health is limited. Findings suggest presence of sex and gender differences in caregiving burden. Given the variety of mental and physical health constructs that were examined, further research is required to substantiate the evidence.
BACKGROUND: The number of older people with dementia and the cost of caring for them, already substantial, are expected to rise due to population ageing. OBJECTIVE: This study makes projections of the number of older people with dementia receiving unpaid care or using care services and associated costs in England. METHODS: The study drew on up-to-date information for England from multiple sources including data from the CFASII study, output from the PACSim dynamic microsimulation model, Office for National Statistics population projections and data from the MODEM cohort study. A simulation model was built to make the projections. RESULTS: We project that the number of older people with dementia will more than double in the next 25 years. The number receiving unpaid or formal care is projected to rise by 124%, from 530,000 in 2015 to 1,183,000 in 2040. Total cost of dementia is projected to increase from £23.0 billion in 2015 to £80.1 billion in 2040, and average cost is projected to increase from £35,100 per person per year in 2015 to £58,900 per person per year in 2040. Total and average costs of social care are projected to increase much faster than those of healthcare and unpaid care. CONCLUSION: The numbers of people with dementia and associated costs of care will rise substantially in the coming decades, unless new treatments enable the progression of the condition to be prevented or slowed. Care and support for people with dementia and their family carers will need to be increased.
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.
Dementia rates are growing (WHO, 2017) and as dementia is associated with a loss of independence, carers are required. Caring for a dementia patient places great demands on the carer’s resources (WHO, 2017). Previous research has indicated that whilst carers are at increased risk of poor mental and physical health (Diener & Chan, 2011; Mahoney, Regan, Katona, & Livingston, 2005; Mausbach, Patterson, Rabinowitz, Grant, & Schulz, 2007), there are some effective protective measures against these increased risks (Cooper et al., 2012; Elvish, Lever, Johnstone, Cawley, & Keady, 2013; Kaufman, Kosberg, Leeper, & Tang, 2010). Aims: This study aimed to evaluate a dementia support group, in relation to protective measures including social and emotional support, in a real-life rural setting from a carers’ perspective. Method: Fourteen informal carers of dementia patients were interviewed about their experiences of attending dementia support groups. The interviews were transcribed verbatim and subject to thematic analysis. Findings: The analysis showed that attendance to the support group was associated with subjective well-being and that social support provided by the group was both stimulating and supportive for the carers. Participants valued the opportunity to share their experiences of being a carer with fellow group members and finding out about resources. Frequently, participants reported that the time period surrounding their loved one receiving a diagnosis of dementia was traumatic and they needed time to adjust to their new circumstances before attending a support group. Conclusions: Implications for wider employment of support groups as a format of support for carers are discussed.
Objectives Recently, research has focused on understanding the needs of persons with early‐onset dementia and their family caregivers who often experience stigmatic beliefs. However, to date, research has not provided a thorough and deep understanding of the stigma formation process and its implications for this population. Thus, the aim of the present study was to explore the stigma formation process as experienced by family members as informal caregivers of persons with early‐onset dementia, and professionals as formal caregivers who are involved in the development, management and provision of services. Method We conducted three focus groups with 16 participants, including spouses of a person with early‐onset dementia and professionals. The focus groups’ transcripts were analysed following a thematic analysis procedure. Results Results indicated that both family members and professionals encounter stigmatic experiences because of their association with younger persons with dementia. Lack of knowledge emerged as the main antecedent and emotional burden as the main consequence of stigma. Conclusion Stigmatic experiences emerged as a pervasive and complex phenomenon among formal and informal caregivers of persons with early‐onset dementia, suggesting the need to developing a comprehensive and integrated approach to reduce them at the individual, professional and societal levels.
The use of quantitative self-report methods for assessing the stress associated with dementia caregiving, especially among minority groups, has been lately criticized. The aim of this study was to examine whether Human Figures Drawings might provide a tool for assessing caregivers' burden. Sixty Israeli Arabs – 30 family caregivers of a person with dementia and 30 gender and age-matched non-caregivers – were asked to draw a caregiver of an elderly person with dementia and a caregiver of an elderly person with a physical disability. While no differences were found between the drawings of caregivers and non-caregivers, statistically significant differences were found between all the characteristics of the drawings depicting a caregiver of an elderly person with dementia and a caregiver of an elderly person with a physical disability, as drawn by caregivers. Several of the drawings' characteristics were significantly associated with caregiver burden. By introducing a nonverbal form of expression, Human Figures Drawings might add utility to the assessment of dementia caregivers' burden.
Objectives: To evaluate cost-effectiveness of an in-home respite care program in addition to standard community-based dementia care to support informal caregivers of persons with dementia compared with standard community-based dementia care. Methods: An age-dependent decision-analytic Markov model was applied from a third-party payer and a societal perspective projecting results of a quasi-experimental study over a time horizon of 5 years assuming a repetition of the program every 6 months. Additionally, to deal with uncertainty and to test robustness of the model scenario, one-way and probabilistic sensitivity analyses were conducted. Results: Implementing the program resulted in a quality-adjusted life year (QALY) gain of 0.14 in favor of the invention group compared with controls and an incremental cost of 1270€ from the third-party payer perspective and of 1220€ from the societal perspective. Next, an incremental cost-effectiveness ratio of 9042€/QALY and of 8690€/QALY was found in the base case, from the third-party payer perspective and the societal perspective, respectively. The scenario, one-way sensitivity, and probabilistic analyses demonstrated robustness of the base-case results. Conclusion: This cost-effectiveness analysis suggests that an in-home respite care program in addition to standard community-based dementia care is a cost-effective approach compared with standard community-based dementia care only. These findings provide more insight into the value of such services for the patient, the caregiver, and for society.
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.
BACKGROUND AND OBJECTIVES: People with dementia become increasingly dependent on others for care as cognition declines. Decision making about placement of people with dementia into long-term institutional care can be emotionally complex. The objective of this review is to describe experiences and perspectives of people with dementia and their family caregivers in making decisions about institutional care placement. RESEARCH DESIGN AND METHODS: MEDLINE, Embase, PsycINFO, and CINAHL were searched from inception to August 2018. Thematic synthesis was used to analyze results. RESULTS: We included 42 studies involving 123 people with dementia and 705 family caregivers from 12 countries. We identified five themes: ensuring safety (avoiding injury due to frailty, protecting against dangerous behaviors, preventing aggressive encounters), reaching breaking point (insufferable burden of caregiving, needs exceeding capabilities, intensifying family conflict, loneliness and isolation, straining under additional responsibilities, making extreme personal sacrifices), vulnerability in lacking support (ill-prepared for crisis, unable to access professional expertise, unpredictable prognostic trajectory, uncertainty navigating health care services, pressured by limited placement opportunities, high cost of placement, resenting loss of autonomy), avoiding guilt of abandonment (sharing accountability, mitigating against disagreement and stigma, reluctance to relinquish caregiving, seeking approval), and seeking reassurance and validation (preserving personhood and former identity, empowerment through engagement, assurance of care quality, acceptance from other care residents). DISCUSSION AND IMPLICATIONS: People with dementia and family caregivers feel vulnerable, disempowered, and guilty in decision making about institutionalization. Person-centered communication and support strategies that foster confidence and reassurance are needed to assist people with dementia and caregivers to make decisions about placement into long-term institutional care settings.
Extract: Besides their feeling of helplessness and uncertainty in making treatment decisions on behalf of PWD, family caregivers tended to rely on medical practitioners to make difficult EOL care decisions.
Background: Living with dementia involves both illness and health, and self-care and care from others. As most persons with dementia live in their own homes, dementia affects not only the person with the disease, but also family, commonly the partner. Research shows that spousal carers feel as though they are losing their partners since they can no longer share thoughts, feelings and experiences as a couple. Aim: The aim of the study was to describe the sense of togetherness of the spouses when one spouse has dementia. Method: The sample consists of 18 recorded conversations between 15 persons with dementia and their spouses. The filmed conversations were transcribed verbatim and then analysed using qualitative content analysis. Findings: One overarching theme arose: Dementia preserved and challenged the value of “us.” It can be challenging for a couple in which one partner has dementia to preserve a sense of togetherness and to have the relationship they wish for. Conclusion: Based on our results, we suggest that practitioners should help couples to strengthen their bond as a couple so as to maintain a sense of well-being. Future studies should examine couplehood under differing conditions, such as long- versus short-term relationships. Prior relationship quality may also be a factor that influences the sense of couplehood following a serious health challenge, such as dementia. Implication for practice: When spouses were able to live together, their relationship was enriched at many levels. Their love for each other strengthened them as a unit – as an “us” – where togetherness seemed to be strong. Future studies need to examine whether the sense of couplehood varies depending on the length of the relationship (i.e., a relationship of many years or a relatively new relationship).
In this study, a cross-sectional, predictive correlation design was used to identify and test a causal relationship between behavior disturbances, coping, family conflict, self-esteem and social support to caregiver burden among dementia caregivers. A total of 450 caregivers of dementia aged over 18 years were recruited from 4 hospitals in northern Thailand based on selected criteria. Demographic Questionnaire, Behavioral Pathology in Alzheimer’s Disease Rating Scale (BEHAVE-AD, The Family Conflict Scale, The Zarit Burden Interview Scale, The Perceived Social Support Questionnaire, The Brief COPE and The Rosenberg Self-Esteem with acceptable reliability coefficients were used to collect data. Data were analyzed using descriptive statistics, Pearson’s Product-Moment Correlation and path analysis by structural equation modeling. Results showed that the modified model fitted with the data and explained 58 % of the variance in caregiving burden among dementia caregivers. Coping and family conflict had a positive direct effect on caregiving burden (p < 0.001), whereas self-esteem and social support had a direct negative effect on caregiving burden (p < 0.001). Behavior disturbance had a positive indirect effect caregiving burden (p < 0.001) via family conflict. Coping had a positive indirect effect on caregiving burden (p < 0.001) via behavior disturbance and family conflict. Social support had a negative indirect effect on caregiving burden (p < 0.001) via family conflict and self-esteem. The results of this study could be used as a guideline for psychiatric nurses in planning an appropriate intervention program to reduce burden of caregivers of dementia patients in Thailand.
Family caregivers of people with dementia (PWD) have a heavy care burden. Affiliate stigma is the stigma internalized by individuals associated with PWD. Limited research has addressed the affiliate stigma among caregivers of PWD and its influence on caregiver burden. Thus, our study investigated the burden of caregivers of PWD and its relationship with affiliate stigma. In addition, we examined the factors related to affiliate stigma. This cross-sectional study was conducted in a general hospital in Taiwan. We recruited 270 PWD and their family caregivers from the outpatient department. Relevant demographic and clinical assessment data of the patients and caregivers were evaluated. Regression analysis was performed to examine the factors associated with affiliate stigma. In total, 23.7% of the family caregivers had depression and 37.4% had anxiety. Male caregivers had higher levels of anxiety and heavier care burdens related to affiliate stigma compared with female caregivers. Moreover, characteristics such as younger age and low levels of dependence in daily activities among PWD were associated with increased affiliate stigma. A higher family caregiver burden was related to more severe affiliate stigma. Interventions for decreasing the family caregiver burden might reduce the effect of affiliate stigma.
OBJECTIVE: Assistive technology (AT) can help carers (family, friends and neighbours) and people with dementia to stay well and safely at home. There are important gaps in what we know about experience of using AT from the perspective of carers of persons with dementia. This study investigates carers' experience of using AT in supporting and caring for persons with dementia who live at home. DESIGN: Qualitative phenomenological study with semi-structured interviews to achieve data saturation and thematic analysis to identify key themes. SETTING: Community-based within the UK. PARTICIPANTS: Twenty-three (14 women, nine men) adult carers of persons with dementia who have used at least one AT device. RESULTS: All participants reported benefiting to varying degrees from using AT. There were five themes and 18 subthemes that highlighted reasons for using AT and use of AT over time. Providing care for a person with dementia, motivation for using AT, changes to roles and routines, carer knowledge and skills for using AT and social, environmental and ethical considerations were the main themes. This study showed that AT can provide reassurance and support for carers of persons with dementia but there are difficulties with acquiring and continued use of AT as dementia progresses. CONCLUSIONS: Carers consider AT as an adjunct to care they provided in caring for a person with dementia. Use of AT should be considered in the personal, social and environmental context of persons with dementia and their carers. Further research and policy interventions are needed to address best use of resources and guidance on data sharing and data protection while using AT.
This article presents results from a conceptual validation of the programme ‘Living Together with Dementia’, through an e-Delphi study carried out during April/May, 2015 with 26 Portuguese and Spanish experts. The programme consists of seven individual weekly sessions and two group sessions over a seven-week period. It covers dementia, communication and behaviour; demands and expectations of the caregiver role; basic activities of daily living; coping and problem solving strategies; physical and mental health of the caregiver and community support. The programme methods mainly consist of discussion sessions, practical examples/simulations and skill training.
Objective: We sought to determine whether the aspects of white matter connectivity implicated in major depression also relate to mild depressive symptoms in family dementia caregivers (dCGs). Methods: Forty-one dCGs (average age=69 years, standard deviation=6.4) underwent a 7 Tesla 64-direction (12-minute) diffusion-weighted imaging sequence. We compared the fractional anisotropy (FA) of 11 white matter features between dCGs with (n=20) and without (n=21) depressive symptoms (Patient Health Questionnaire-9 scores ≥5). Results: Caregivers reporting depression symptoms had lower FA in tracts connecting to the posterior cingulate cortex (Cohen's d = −0.9) and connecting dorsolateral prefrontal with rostral cingulate regions (Cohen's d = −1.2). Conclusions: Posterior cingulate and dorsolateral prefrontal-to-rostral cingulate white matter, implicated in prior studies of major depression, appear relevant to mild depression in dCGs.
This report produced by The ASI summarises the results of three surveys that were distributed to people living with dementia, family carers, and Community Champions (Understand Together). The aims of this report are threefold:
1. To identify the current challenges experienced by people with dementia and family carers in the current Covid-19 Pandemic through simple surveys.
2. To bring together suggestions from people with dementia and family carers of how ASI can continue to support them in lieu of suspended services.
3. To communicate the above work in an accessible way to the committee in such a way that will enable the committee to review and shortlist the evidence in a timeline manner.
Results are presented for each individual cohort: People living with dementia, Family Carers, and Community Champions.
Caring for an individual living with Alzheimer’s disease and other forms of dementia is especially challenging and impacts every aspect of the lives of the family caregivers. Family caregiving is defined as informal, unpaid care provided by family or friends to people with a chronic illness or disability. Caregiver burden, often experienced by a caregiver for a cognitively impaired family member, is multifaceted involving physical, psychological, social, and emotional problems. To date, little has been done to examine the relationship between the knowledge of Alzheimer’s disease and memory loss and caregiver burden. To fill this gap, a cross sectional, correlational design was employed to collect data from a convenience sample (N = 104) of African American and Caucasian dementia family caregivers. For this study, caregivers ranged from 25 to 89 years of age with African American caregivers possessing significantly lower levels of knowledge about Alzheimer’s disease and other dementias compared to Caucasian caregivers, p <.001. There were 44 caregivers who scored 41 or greater on the Caregiver Burden Inventory corresponding to moderate to severe and higher levels of burden. Results of hierarchical multiple regression models indicated that higher levels Alzheimer’s disease knowledge was significantly associated with lower caregiver burden for all caregivers, B = −0.294, p <.01. Additionally, employment status was significantly associated with caregiver burden. This study highlights the benefits of including disease specific knowledge within educational components of dementia related interventions and programs involving families.
Aim: This study aimed to develop the empowerment scale for family caregivers of community-dwelling people with dementia (PWD) in Japan (EFCD) and to validate the scale. Methods: The questionnaires were mailed to 820 family caregivers of PWD. The first version of the EFCD based on interviews with family caregivers and elderly care specialists and content validity results was tested. Participants also completed the Revised Scale for Caregiving Self-Efficacy and the General Health Questionnaire. For the EFCD development procedure, construct validity was evaluated by item analysis and exploratory factor analysis. Criterion validity was tested using Spearman's correlations between scores of the three scales. Reliability was evaluated using Cronbach's alpha, intraclass correlation coefficients (ICC), and Bland and Altman analysis. The final model was verified by confirmatory factor analysis. Results: Data from 304 family caregivers were analyzed. Exploratory factor analysis identified a 16-item, four-factor structure for the final version of the EFCD, as follows: (a) Excellent Practice in Dementia Care; (b) Understanding the Essence of Dementia Care; (c) Caring for Oneself as well as for the Person with Dementia; and (d) Having Peers with Shared Support Activities. Reliability and validity of the scale was established using the methods described. Conclusions: The developed EFCD is a reliable and valid measure that provides a simple assessment of empowerment among family caregivers of PWD.
Aim and objective To explore the challenges faced by family caregivers of people with frontotemporal dementia and other forms of dementia affecting the frontal and temporal lobes causing behavioural disturbances through a qualitative approach with in‐depth interviews. Background Studies of different forms of dementia involving degeneration of the frontal and temporal lobes have mainly focused on the neurophysiology and physiology of the disease and on caregivers’ health. Few studies have described the challenges and burdens connected with everyday life and in relation to suitable nursing home placement that are faced by family caregivers. Method and design This study used a descriptive and explorative design. Eleven semi‐structured interviews with family caregivers of patients from special units in four nursing homes were conducted in 2014. Data were analysed based on Kvale and Brinkmann's three contexts of interpretation: self‐understanding, common sense and theoretical understanding. Checklist for qualitative studies: Standards for Reporting Qualitative Research (SRQR) http://www.equator-network.org/reporting-guidelines/srqr/ Results Two central themes were derived from the data: changes in behaviour and personality were perceived as incomprehensible, frightening and increasingly difficult to manage. Family caregivers experienced challenges in finding suitable care facilities when they were not able to continue providing home care. Due to behavioural disturbances and lack of relevant competencies among health personnel, family members were often moved between nursing homes. Conclusion Pronounced personality and behavioural disturbances such as tactlessness and aggression in a family member with dementia are experienced by caregivers as stressful and burdensome and may lead to feelings of shame and guilt. A lack of suitable care facilities adds to the stress and difficulties of the families and entails an additional and unresolved burden. Relevance to Clinical Practice The study reveals a need for more knowledge among those organising health services as well as healthcare professional dealing with this patient category to ease the burden on next of kin.
Background: Since people with advanced dementia are usually not able to make complex decisions, it is usually the family caregivers, as proxies, who have to decide on treatments and their termination. However, these decisions are difficult for the caregivers to make, as they are often inadequately informed and cannot properly assess the consequences; moreover, they are concerned about harming the sick person. We aimed to first develop an informative booklet about palliative care issues for caregivers of people with advanced dementia. Secondly, we aimed to investigate a change in family caregivers' knowledge regarding palliative care issues and caregivers' involvement in medical and care decisions before and after studying this booklet. Methods: A first version of the booklet was drafted by an experienced psychiatrist and palliative care specialist based on existing booklets and guidelines; necessary cultural adaptions were taken into consideration. A nominal group process was conducted to develop the informative guide. In order to investigate the acceptance of the booklet and the possibility to implement it, 38 patient-caregiver dyads were recruited, and caregivers were interviewed both before receiving the booklet and after 3 months of receiving the booklet. Results: Experts from various disciplines collaborated on a German booklet for family caregivers of people with advanced dementia as an information aid regarding issues of palliative care. The subsequent test showed that all caregivers had experienced a personal benefit from the booklet. Caregivers had a significant gain of knowledge after provision of the booklet. A large proportion of caregivers who had not previously considered and/or discussed medical topics reported that they had done so within 3 months after obtaining the booklet, or planned to do so in the near future. Conclusions: The caregivers valued the comprehensible, concise and well-structured information guide on palliative care issues in advanced dementia. They agreed it increases knowledge and prompts decision making and therefore should be developed in many languages and disseminated among family caregivers of people with dementia. Trial registration: Clinicaltrial.gov, NCT03548142. Retrospectively registered 7 June 2018.
As the ageing population grows globally, the need for informal care-usually provided by family and friends-will continue to increase. Numbers of people with dementia also continue to rise, and much of their care will be provided by relatives. As such, more people who may themselves be older, will take on such caring roles. Consequently, more carers are likely to have education and support needs. Amidst government recognition of the need to provide good quality, person-centred education and support to carers, there are tensions between the potential for such provision to be resource intensive and whether existing services have the capacity to meet the needs of carers. Massive Open Online Courses (MOOCs) are a resource with scope to meet some of these educational and support needs. MOOCs enable flexible learning, are often free, and can be accessed anywhere in the world. Providing supportive dementia care requires carers to have an understanding of the condition, assistance to cope with the responsibilities of caring, and recognition of the importance of their own health and wellbeing as well as the person they support. In response to the needs of family carers of people with advancing dementia identified through a 5 year programme of research, we developed a MOOC-dementia care: living well as dementia progresses. This is an accessible source of relevant and engaging information; which enables carers to learn about advancing dementia, consider their own needs and create an interactive global forum of peer support.
Background and objectives: Behavioral and psychological symptoms of dementia are highly prevalent, stressful, and challenging to manage. Caregivers’ approaches for handling these behaviors have implications for both care partners’ well-being. Yet the specific strategies that caregivers use in their daily management of behavioral and psychological symptoms of dementia are relatively unknown. This study used in-depth focus group data to examine family caregivers’ strategies for managing behavioral and psychological symptoms of dementia. Design: As part of a larger study (NINR R01NR014200), four focus groups were conducted with a total of 26 family caregivers of older adults with dementia. Caregivers were asked to describe the strategies they use to manage behavioral and psychological symptoms of dementia. Data from audio-recorded sessions were transcribed, coded to identify relevant concepts, and reduced to determine major categories. Results: Caregivers managed behavioral and psychological symptoms of dementia through (1) modifying interactions within the care dyad (e.g., simplifying communication); (2) modifying the care environment (e.g., using written prompts); (3) activity engagement; (4) humor; (5) self-care; and (6) social support. Conclusion: Family caregivers manage behavioral and psychological symptoms of dementia using strategies to minimize stress and address the needs of both care partners. Caregivers’ own accounts of these approaches reveal a window into their everyday management of difficult behaviors. The present findings generate key information for routine clinical care and targeted interventions to promote caregiver well-being.
Background and Objectives: The purpose of this study was to identify risk and protective factors for abusive and neglectful behavior in the context of daily caregiving. Research Design and Methods: Family caregivers who co-reside with a care recipient with Alzheimer's disease and related dementia, recruited from social media, completed 21-days of diaries. Multilevel modeling with days (n = 831) nested within caregivers (N = 50) was used to evaluate relationships between hypothesized risk and protective factors and the odds of an abusive or neglectful behavior on a given day. Results: Disruptions in the daily routine and stress of the caregiver related to behavioral symptoms of the care recipient are significant risk factors for abusive and neglectful behavior. Participating in a meaningful activity with the care recipient when it occurs twice in a day is a significant protective factor against use of a neglect behavior (OR = 0.19; CI 0.06-0.64; p =. 01), but not for abusive behavior. Hypotheses that spending the full day together would increase risk, and that receipt of instrumental support and caregiver participation in self-care would decrease risk, were not supported. Discussion and Implications: Findings demonstrate that risk of an abusive or neglectful behavior varies from day-to-day in the presence and absence of contextual factors, and that the majority of the variance in the odds an abusive or neglectful behavior occurring is related to day-level factors. Findings demonstrate that diary surveys are critical to identifying ecologically valid modifiable risk and protective factors for abusive and neglectful behaviors that can be targeted in future interventions.
Objectives: To examine factors that influence decision-making, preferences, and plans related to advance care planning (ACP) and end-of-life care among persons with dementia and their caregivers, and examine how these may differ by race. Design: Cross-sectional survey.Setting: 13 geographically dispersed Alzheimer's Disease Centers across the United States.Participants: 431 racially diverse caregivers of persons with dementia. Measurements: Survey on Care Planning for Individuals with Dementia. Results: The respondents were knowledgeable about dementia and hospice care, indicated the person with dementia would want comfort care at the end stage of illness, and reported high levels of both legal ACP (e.g., living will; 87%) and informal ACP discussions (79%) for the person with dementia. However, notable racial differences were present. Relative to white persons with dementia, African American persons with dementia were reported to have a lower preference for comfort care (81% vs. 58%) and lower rates of completion of legal ACP (89% vs. 73%). Racial differences in ACP and care preferences were also reflected in geographic differences. Additionally, African American study partners had a lower level of knowledge about dementia and reported a greater influence of religious/spiritual beliefs on the desired types of medical treatments. Notably, all respondents indicated that more information about the stages of dementia and end-of-life health care options would be helpful. Conclusions: Educational programs may be useful in reducing racial differences in attitudes towards ACP. These programs could focus on the clinical course of dementia and issues related to end-of-life care, including the importance of ACP.
Objective: To identify barriers and facilitators to help seeking for a dementia diagnosis from the perspective of carers and people with dementia.Design: A systematic review of the literature was conducted according to the PRISMA guidelines (PROSPERO protocol registration CRD42018092524). Nine electronic databases were searched for qualitative, quantitative, and mixed methods primary research studies. Two independent reviewers screened titles and abstracts, full texts of eligible studies, and conducted quality appraisal of included articles. A convergent qualitative synthesis approach was used. Results: From 7496 articles, 35 papers representing 32 studies from 1986 to 2017 were included. Studies originated from 13 countries across 4 continents. Barriers and facilitators were reported predominantly by carers. A small number of studies included people with dementia. Barriers included denial, stigma and fear, lack of knowledge, normalization of symptoms, preserving autonomy, lack of perceived need, unaware of changes, lack of informal network support, carer difficulties, and problems accessing help. Facilitators included recognition of symptoms as a problem, prior knowledge and contacts, and support from informal network. Conclusions: Studies from a 30-year period demonstrated that barriers to help seeking persist globally, despite increasing numbers of national dementia policies. Barriers and facilitators rarely existed independently demonstrating the complexity of help seeking for a diagnosis of dementia. Multiple barriers compounded the decision-making process and more than one facilitator was often required to overcome them. Multi-faceted interventions to reduce barriers are needed, one approach would be a focus on the development of dementia friendly communities to reduce stigma and empower people with dementia and carers.
Background: Worldwide, patient and public involvement (PPI) in health research has grown steadily in recent decades. The James Lind Alliance (JLA) is one approach to PPI that brings patients, carers and clinicians together to identify priorities for future research in a Priority Setting Partnership (PSP). Our study aim was to describe the reflections of informal carers of people with dementia on the possibility of participating in the JLA's PSP process, for both themselves and the recipients of their care. In addition, we wanted to explore barriers to and facilitators of their participation. Methods: We conducted four focus groups with 36 carers of people with dementia. Thematic analysis was applied to analyse the data. Results: An overarching theme emerged from the participants' reflections: "Creating empowering teams where all voices are heard". The overarching theme incorporates the participants' suggestions about the importance of equivalence in power, mutual agreement with and understanding of the goals, adequate support, openness about each partner's tasks and the bonds needed between the partners to sustain the enterprise, and expectations of positive outcomes. From the overarching theme, two main themes emerged: "Interaction of human factors, the PSP process and the environment" and "The power of position and knowledge". The overall results indicated that carers are willing to participate in PSP processes and that they thought it important for people with dementia to participate in PSP processes as well, even if some might need extra support to do so. The carers also identified the need for research topics that influence their everyday lives, policy development and healthcare services. Conclusions: Both carers and the people with dementia for whom they care are able to contribute to the PSP process when given sufficient support. The involvement of these groups is important for setting healthcare research agendas, developing research projects that increase awareness and knowledge about their circumstances and improving health professionals', researchers' and policymakers' understanding of and insight into their unique situations.
Family members provide the majority of caregiving to individuals living with Alzheimer’s disease (AD) and related dementias. Asian American families are disproportionately impacted by the burden of caregiving due to limited knowledge about the disease in this community. This study explored how Vietnamese American caregivers understand AD and provide care to family members with AD. Twenty caregivers who have provided care to a family member with AD participated in a semi-structured qualitative interview. Data were analyzed using thematic analysis. Several themes were identified in the caregivers’ understanding of AD: (a) “Now I know:” the disruptions, shocks and surprises leading up to the initial diagnosis; (b) The frustrations of managing family members’ cognitive impairments; (c)“Going with the flow:” challenges in managing personality and behavioral changes; (d) The exhaustion of around-the-clock caregiving; (e)“Taking it day by day” in the face of progressively worsening symptoms. Underlining the participants’ descriptions of AD was a shared understanding of the progressively worsening, complex and unpredictable nature of the disease that makes it challenging for family caregivers on a daily basis. Findings provide important implications for healthcare workers’ outreach to Vietnamese American families to ease the caregiving experience through culturally-responsive education, thereby enhancing the families’ ability to recognize the early symptoms and seek appropriate help.
Background The generation of people getting older has become a public health concern worldwide. People aged 65 and above are the most at risk for Alzheimer's disease which is associated with physical and behavioral changes. This nurtures informal support needs for people living with dementia where their families together with other community members are the core providers of day to day care for them in the rural setting. Despite global concern around this issue, information is still lacking on informal support delivered to these people with dementia. Objective Our study aimed at establishing the nature of informal support provided for people with dementia (PWDs) and its perceived usefulness in rural communities in South Western Uganda. Methods This was a qualitative study that adopted a descriptive design and conducted among 22 caregivers and 8 opinion leaders in rural communities of Kabale, Mbarara and Ibanda districts in South Western Uganda. The study included dementia caregivers who had been in that role for a period of at least 6 months and opinion leaders in the community. We excluded trained health workers. Results The study highlights important forms of informal support offered to PWDs such as support in activities of daily living, enabling access to medical attention, recovering misplaced items, provision of herbal remedy, informal counseling, and sourcing carers from other families to offer presence and support in the hope to impact positively on behavioral outbursts and the frustration of living with dementia. Conclusion The study revealed various forms of informal support that are available for PWDs in South Western Uganda and stressed the role of caregivers and the perceived usefulness of the care provided.
Objective: The aim of the study was to explore the feasibility of using telepresence robots to encourage interactive communication in dementia care, from the perspective of family carers. Methods: Qualitative findings from semi-structured interviews with six family carers. Results: Generally, family carers reported a feeling of presence and connectedness when talking to their family member via the telepresence robots. They reported the robots as helping to enhance longer conversations and social connection with their family member. Conclusion: Telepresence may offer potential to encourage social connection, in particular where families are unable to make regular visits to the nursing home.
Objectives: The purpose of this study was to obtain input and feedback on a proposed intervention to reduce stress and enhance the health of Vietnamese dementia caregivers. Methods: Sixteen semi-structured, in-depth interviews and two focus groups were conducted with a total of 21 key stakeholders (i.e., family caregivers, professionals, and community leaders). Results: Several themes emerged from the data, and these themes fell into two major domains: the first domain was recruitment and engagement into the intervention: (1) importance of faith-based institutions, (2) inclusion of multiple family members in the intervention, (3) community empowerment/ownership, and (4) importance of credibility and trust. The second domain included themes on intervention content: (1) education about Alzheimer’s disease and dementias and (2) tailoring the intervention to caregivers’ needs. Conclusions: Findings indicate that the proposed intervention could be very beneficial to caregivers, but slight modifications needed to be made.
The purpose of this study was to gain a greater understanding of the experiences of African American daughters caring for parents with Alzheimer's disease or a related dementia (ADRD). In this secondary analysis of a subset (N = 12) of the sample from a previous study, daughters averaged 54 years of age and were caring for parents with moderate to severe ADRD. Results revealed two main categories: Caregiver Concerns and Caregiver Coping. Subcategories included challenging behaviors, social aspects, integration, and family culture and values. Findings offer insight into cultural factors relevant to practice along with research recommendations.
Objectives: One-on-one structured Montessori-based activities conducted with people with dementia can improve agitation and enhance engagement. These activities may however not always be implemented by nursing home staff. Family members may present an untapped resource for enabling these activities. This study aimed to evaluate the impact of the Montessori activities implemented by family members on visitation experiences with people who have dementia. Design: Cluster-randomized crossover design. Setting: General and psychogeriatric nursing homes in the state of Victoria, Australia. Participants: Forty participants (20 residents and 20 carers) were recruited. Intervention: During visits, family members interacted with their relative either through engaging in Montessori-based activities or reading a newspaper (the control condition) for four 30-minute sessions over 2 weeks. Measurements: Residents' predominant affect and engagement were rated for each 30-second interval using the Philadelphia Geriatric Center Affect Rating Scale and the Menorah Park Engagement Scale. The Pearlin Mastery Scale was used to rate carers satisfaction with visits. The 15-item Mutuality Scale measured the carers quality of their relationship with the resident. Carers' mood and overall quality of life were measured using the Center for Epidemiological Studies Depression Scale and Carer-QoL questionnaires, respectively. Results: Linear regressions within the generalized estimating equations approach assessed residents' and carers' outcomes. Relative to the control condition, the Montessori condition resulted in more positive engagement (b = 13.0, 95%CI 6.3-19.7, p < 0.001) and affect (b = 0.4, 95%CI 0.2-0.6, p < 0.001) for the residents and higher satisfaction with visits for carers (b = 1.7, 95%CI 0.45-3.00, p = 0.008). No correction was applied to p-values for multiple comparisons. Conclusion: This study strengthens the evidence base for the use of the Montessori programs in increasing well-being in nursing home residents. The findings also provide evidence that family members are an additional valuable resource in implementing structured activities such as the Montessori program with residents.
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.
Informal caregivers of persons with dementia often report high levels of anxiety, depression and burden. Nonetheless, other less evaluated psychological symptoms might also influence their health-related quality of life (HRQoL). The aim of this study was to comprehensively analyse other psychological symptoms and their influence on the health-related quality of life of informal caregivers. Fifty-four informal women caregivers and fifty-six women non-caregivers were recruited to participate in the study. Psychological symptoms were assessed using the Symptom Check-List-90-Revised (SCL-90-R) questionnaire and the HRQoL with the EuroQoL-Five Dimensions and Three Levels (EurQoL-5D-3L) questionnaire. Significant between-group differences were found in the majority of scales in the SCL-90-R questionnaire (p < 0.01) and caregivers also reported a worse HRQoL than non-caregivers (p < 0.05). Several psychological symptoms such as obsession-compulsive (beta = 0.47), hostility (beta = 0.59), and somatization (beta = 0.49) had a significant impact on caregivers' HRQoL (R-2 explained between 0.17 and 0.30 of the variance). Caregivers are at a higher risk of suffering other psychological symptoms and show a moderate-high level of psychiatric morbidity, which therefore explains the poorer HRQoL outcomes. Supporting interventions should be provided to mitigate these psychological symptoms in order to improve their general distress and HRQoL.
Dementia is a term used when the brain functionality reduces in terms of behaviour, memory and thinking clearly for daily activities. In the early stages, memory impairment limits the memory processes in patients with dementia (PwD). In advanced stages, it affects the PwD’s autonomy when performing complex daily activities such as PwD’s interaction and communication with people around them. Dementia is becoming one of the major causes of disability and dependency among older people worldwide. It affects the ability of an individual to reason with and to understand others, which creates difficulties in communication between the family caregivers and PwDs. Thus, there is a need for a platform to help family caregivers to communicate with the PwDs efficiently. One of the helpful tools to work with is a mobile application (app). Mobile apps can be widely available and easy to use for the people caring for PwDs. This paper describes the development of a mobile app for people interacting with PwDs. The app contains different scenarios related to daily activities that are usually performed by PwDs. Each scenario includes a set of options for the users and asks them to choose the option in response to the corresponding daily activity. Having chosen the option, the app provides the user with comments which are already included in the app for each scenario. The comments were developed by the research team in partnership with clinicians having more than 5 years of experience with PwDs. Caring4Dementia app can address the communication problem by providing (1) specific knowledge about the PwD’s condition cognitive performance evaluation, and monitoring, and (2) educating on appropriate behaviour to adopt while facing communication challenges associated with dementia. The theoretical framework of a communication training app introduced in the present paper will direct the future empirical investigations where the effectiveness of the app will be compared to the effectiveness of currently existing methods.
Effective support to carers of people with dementia can be critical to maintain quality of life for people with dementia and their families and to sustain the future of health and care systems. Qualitative interviews were undertaken with 14 carers of people with dementia across Scotland, and the data were analysed to identify the outcomes important to the carers. The importance of relationships emerged as the core theme, including relationship with the person with dementia, family members, other carers, and professionals. Although not evident in the literature, the authors noted that the concept of self-relationship was important to carers in the context of changing relationships with others. A multilayered approach to understanding relationships, and an approach to engagement that enables carers to define and express their priorities, is necessary to fit with the relational nature of care.
The aim of this job is to know the existing relationship between the task of caring patients with Alzheimer's disease, caregivers' gender and their level of academic studies. Descriptive study, 69 persons diagnosed with Alzheimer's disease and their respective familiar caregivers as subjects of the study. Age, gender, academic level, burden, depression, anxiety level, quality of life and social loneliness have been measured in caregivers. Age, gender, dependency level and neuropsychological state have been measured in patients. Data collection was done in 2016. Logistic regression analysis was performed. Caregivers with high levels of academic studies suffer more burden, being women in their majority. They are more likely to present social loneliness and higher levels of anxiety and a worse quality of life than men. The burden may be due to a greater number of responsibilities to respond to, and to the inability to combine it with the role of caregiver. We can conclude that women become victims of caring Alzheimer' patients.
The families of people diagnosed with dementia are commonly first-in-line caregivers. This can have a considerable effect on their lives, health, and relationships. However, few studies have focused on the children in such families. Therefore, the aim of this study was to describe how children, in their own narratives, construct themselves as subjects growing up and caring for a parent with dementia. The study applies discourse analysis. The findings show three subject positions: parent to your parent(s), orphan with parents, and time traveler stuck in time. There is a need to support these children, both as children and as young adults. More knowledge is necessary regarding the kind of support they might want or need. For health care professionals, it is important to know that it might not always be easy to ask for information or support as a child caring for a sick parent.
Objective: This study aimed to determine whether delivery of a dyadic intervention using telehealth was noninferior to delivery of the same program using traditional face-to-face delivery through home visits. Design: We conducted a noninferiority randomized controlled trial. Participants: Participants had a diagnosis of dementia, were living in the community, and had an informal caregiver who reported difficulties in managing activities of daily living or behavioral symptoms. Intervention: Participants were randomized to receive either telehealth or home visit delivery of the same intervention program. Measurements: The primary outcome was the Caregiving Mastery Index, secondary outcomes included caregiver's perceptions of change, activities of daily living function, and type and frequency of behavioral symptoms of persons living with dementia. Therapists delivering the intervention recorded the time spent delivering the intervention as well as travel time. Results: Sixty-three dyads were recruited and randomized. Both groups reported improvements for the primary outcome, however, these were not statistically significant. There were no significant differences between groups for the primary outcome (mean difference 0.09 (95% confidence interval −1.26 to 1.45) or the secondary outcomes at 4 months. Both groups reported significant improvements in caregiver's perceptions of change. The amount of time spent delivering the content of the program was similar between groups, however offering the intervention via telehealth significantly reduced travel time (mean 255.9 minutes versus mean 77.2 minutes, p <0.0001). Conclusion: It is feasible to offer dyadic interventions via telehealth and doing so reduces travel time and results in similar benefits for families.
Objective: International appeals call for interventions to prevent aggression and other behavioral problems in individuals with dementia (IWD). Aggression Prevention Training (APT), based on intervening in three contributors to development of aggression (IWD pain, IWD depression, and caregiver–IWD relationship problems) aims to reduce incidence of aggression in IWD over 1 year. Design: Randomized, controlled trial. Setting: Three clinics that assess, diagnose, and treat dementia. Participants: Two hundred twenty-eight caregiver–IWD dyads who screened positive for IWD pain, IWD depression, or caregiver–IWD relationship problems randomized to APT or Enhanced Usual Primary Care (EU-PC). Intervention: APT, a skills-based intervention delivered over 3 months to address pain/depression/caregiver–IWD relationship issues. EU-PC included printed material on dementia and community resources; and eight brief, weekly support calls. Measurements: The primary outcome was incidence of aggression over 1 year, determined by the Cohen Mansfield Agitation Inventory-Aggression Subscale. Secondary outcomes included pain, depression, caregiver–IWD relationship, caregiver burden, positive caregiving, behavior problems, and anxiety. Results: Aggression incidence and secondary outcomes did not differ between groups. However, in those screening positive for IWD depression or caregiver–IWD relationship problems, those receiving EU-PC had significant increases in depression and significant decreases in quality of the caregiver–IWD relationship, whereas those receiving APT showed no changes in these outcomes over time. Conclusion: The cost to patients, family, and society of behavioral problems in IWD, along with modest efficacy of most pharmacologic and nonpharmacologic interventions, calls for more study of novel preventive approaches.
BACKGROUND: Persons with dementia (PwD) need support to remain in their own homes as long as possible. Family caregivers, homecare nurses and general practitioners (GPs) play an important role in providing this support, particularly in rural settings. Assessing caregiver burden is important to prevent adverse health effects among this population. This study analysed perceived burden and needs of family caregivers of PwD in rural areas from the perspectives of healthcare professionals and family caregivers. METHODS: This was a sequential explanatory mixed methods study that used both questionnaires and semi-structured interviews. Questionnaires measuring caregiver burden, quality of life and nursing needs were distributed to the caregivers; health professionals received questionnaires with adjusted items for each group. Additionally, in-depth qualitative interviews were carried out with eight family caregivers. RESULTS: The cross-sectional survey population included GPs (n = 50), homecare nurses (n = 140) and family caregivers (n = 113). Healthcare professionals similarly assessed the psychosocial burden and stress caused by behavioural disturbances as most relevant. Psychological stress, social burden and disruptive behaviour (in that order) were regarded as the most important factors from the caregivers' perspective. It was found that 31% of caregivers reported permanent or frequent caregiver overload. Eight themes related to caregiver burden emerged from the subsequent interviews with caregivers. CONCLUSIONS: Professional support at home on an hourly basis was found to be highly relevant to prevent social isolation and compensate for lack of leisure among caregivers of PwD. Improvement of interprofessional dementia-related education is needed to ensure high-quality primary care.
To the editor:
We read with interest the recent article titled “Providing care to a family member affected by head and neck cancer: a phenomenological study,” by Dri et al. . The authors concluded that caregivers play a crucial role in patients’ post-treatment recovery, and future planning for the treatment of head and neck cancer (HNC) should consider caregivers’ needs....
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.
Families living with younger onset dementia face unique social challenges, which services do not currently address. There is a gap in understanding the experiences of families affected by younger onset dementia, including the interactions and relationships within the family units, and with existing services and supports. In this qualitative research study, semi-structured interviews were conducted across Australia with seven health and social care providers, five persons living with younger onset dementia, six spouse/carers, and 17 children. A thematic analysis was conducted using a theoretical lens drawn from the combined perspectives of the social model of disability and family systems-illness model. Two central themes emerged in the data: (1) Understanding the social demands on the family - lifecycle challenges living with younger onset dementia from a social and family context; and (2) Interactions of health and social care providers with families living with younger onset dementia - opportunities and challenges in providing support and services geared to a whole family approach. In order to provide families for those living with younger onset dementia with optimal assistance and support, co-creation of a family-focused services model is proposed. Its purpose is to support effective therapeutic interactions and service development among service users, service providers, and stakeholders.
BACKGROUND: Online contacts with a health professional have the potential to support family caregivers of people with dementia. OBJECTIVE: The goal of the research was to study the effects of an online self-management support intervention in helping family caregivers deal with behavior changes of a relative with dementia. The intervention-involving among others personal email contacts with a dementia nurse-was compared with online interventions without these email contacts. METHODS: A randomized controlled trial was conducted with 81 family caregivers of people with dementia who live at home. Participants were randomly assigned to a (1) major self-management support intervention consisting of personal email contacts with a specialist dementia nurse, online videos, and e-bulletins; (2) medium intervention consisting only of online videos and e-bulletins; or (3) minor intervention consisting of only the e-bulletins. The primary outcome was family caregivers' self-efficacy in dealing with behavior changes of the relative with dementia. Secondary outcomes were family caregivers' reports of behavior problems in the people with dementia and the quality of the relationship between the family caregiver and the person with dementia. Measurements were performed at the baseline and at 6 (T1) and 12 weeks (T2) after the baseline. A mixed-model analysis was conducted to compare the outcomes of the 3 intervention arms. RESULTS: Family caregivers participating in the major intervention involving email contacts showed no statistically significant differences in self-efficacy after the intervention compared with the minor intervention involving only e-bulletins (difference -0.02, P=.99). In the adjusted analysis, the medium intervention (involving videos and e-bulletins) showed a negative trend over time (difference -4.21, P=.09) and at T1 (difference -4.71, P=.07) compared with the minor intervention involving only e-bulletins. No statistical differences were found between the intervention arms in terms of the reported behavior problems and the quality of the relationship between the family caregiver and the person with dementia. CONCLUSIONS: The expectation that an online self-management support intervention involving email contacts would lead to positive effects and be more effective than online interventions without personal email contacts was not borne out. One explanation might be related to the fact that not all family caregivers who were assigned to that intervention actually made use of the opportunity for personal email contact. The online videos were also not always viewed. To obtain more definite conclusions, future research involving extra efforts to reach higher use rates is required. TRIAL REGISTRATION: Netherlands Trial Registry NTR6237; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=6237 (Archived by WebCite at http://www.webcitation.org/6v0S4fxTC). INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/resprot.8365. ©Judith G Huis in het Veld, Bernadette M Willemse, Iris FM van Asch, Rob BM Groot Zwaaftink, Paul-Jeroen Verkade, Jos WR Twisk, Renate Verkaik, Marco M Blom, Berno van Meijel, Anneke L Francke. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 25.02.2020.
Background and Objectives: Currently, one in eight people over the age of 65 have dementia, and approximately 75% of caregiving is provided by volunteer family members with little or no training. This study aimed to quantify points of stress for home-based caregivers with the aim of reducing stress for them while concurrently supporting quality of life for the people with dementia whom they cared for. The overreaching purpose was to increase our knowledge of the caregiver stress burden and explore potential technologies and behaviors to ease it. Materials and Methods: We interviewed home-based and professional caregivers regarding causes of emotional and physical stress and methods they used to alleviate it. Results: This study found that: (1) dementia symptoms created a burden of stress for home-based caregivers primarily in the areas of medication management, memory loss, hygiene care and disruptive behaviors; (2) home-based caregivers identified “finding available resources” as the most important source of stress relief; (3) a minority of home-based caregivers possessed a resource network and knew how to find resources but all professional caregivers were able to find resources and support; (4) home-based caregivers combated dementia symptoms with positive distractions and human touch with little use of technology, since it was mostly unknown; and 5) facility-based caregivers were knowledgeable and readily used dementia-based technology. Conclusion: Since professional caregivers have access to technological resources that our home-based caregivers lack, one might logically conclude that we should transfer technology used by professionals to those with dementia. However, great caution needs to be in place before we take that step. Successful technology should address the human experience as home-based caregivers try to use new technologies. Human-centric technology addresses the needs of both people with dementia and the home-based caregiver.
Family caregivers play a critical role in dietary care and the nutritional status of people with dementia. The aim of this study was to investigate the effects of a family care-based dementia dietary educational program (DDEP) on family caregivers’ nutritional knowledge, healthy eating behavior and nutritional status of people with dementia. A total of 57 pairs of participants completed this longitudinal experimental study. Group A received routine care. Group B received the DDEP. Three outcomes were measured at pretest (T1), posttest (T2) and follow-up test (T3). Generalized estimating equations and regression were used to analyze the data. The scores of the caregivers’ nutritional knowledge significantly increased after receiving the DDEP in group B, and this increase was better than in group A. The posttest and follow-up test scores of healthy eating behavior were significantly higher than the pretest scores in both groups. The scores of nutritional status in group B increased from the pretest to the follow-up test, although there was no significant difference between the two groups. Some demographic factors played significant roles in the caregivers’ nutritional knowledge and healthy eating behavior. In sum, the DDEP improved the caregivers’ nutritional knowledge and healthy eating behavior for dementia. The demographic factors of family caregivers should be considered when providing nutritional information to enhance the nutritional status of people with dementia. The DHPDEP should be incorporated into the in-service education and training courses for nurses or dietitians who work with people with dementia.
The majority of people living with dementia reside in the community and are often reliant on the support of informal carers to do so. Family carers face many challenges in supporting the person with dementia to remain at home, and short-term respite care is a valued service that offers a temporary break from the role. Respite cottages provide short-term care in a residential home-like setting with a limited number of clients and is a more flexible approach to accessing the service. Disproportionate use of cottage respite in Australia suggests this model is preferred over traditional respite within residential aged care facility (RACF) settings, yet limited research exists to compare these models. This study sought to understand the perceptions of carers who had used cottage respite in comparison to other models, and explore the contribution of cottage respite for supporting carers to continue in their role and maintain their care recipient (CR) living at home. Semi-structured interviews were conducted with 126 family carers who had used one of two New South Wales-based respite cottages within a 2-year period; 67 of whom had also used RACF respite. Thematic analysis revealed four main themes around the benefits of cottage respite: (a) an effective essential service, (b) flexibility, (c) familiarity and (d) appropriateness, especially for early stage or younger onset dementia. Carers indicated that the more homely, familiar and intimate cottage model of respite care was preferential to that of the larger, institutional-style RACF respite setting. Carers credited the cottage model of respite service with delaying their need for permanent residential placement by over 12 months. The cottage respite model provides an important avenue to supporting the individual needs of dementia dyads, with potential to delay permanent placement, and should be offered more broadly to provide people with more choice about their care.
There has been increasing research on the experience and needs of caregivers for persons with YOD, who are mainly spouses. Yet one little-explored area is their evolving parental role. As the person with YOD becomes less able to parent, the partner must take on more and more parental responsibilities. This occurs in much-changed familial context, with children often asked to assume caretaking roles and experiencing strong feelings such as grief, anger, and fear. How do the parents without YOD understand and negotiate their ever-changing parenting role, and how do their children experience it? We conducted in-depth, semi-structured interviews with four parents without YOD (coincidentally all mothers) and eight children ages 16–20 (3–18 when parent was diagnosed) regarding the changing nature of the parental-child relationship. These data were analyzed using thematic narrative analysis, in which respondents' material is closely read as it is gathered and analyzed for patterns. Three primary themes emerged. First, there are significant changes in family structures and role. Mothers increasingly assume all parental responsability. Children assume roles of carers and earners, and at times reluctant decision-making partners. Such responsabilities can feel overwhelming at times. However, the children discribed not wanting to burden mother with their feelings and experience, a second prominent theme. Finally, such muting of their experience likely contributes to mothers feeling they are managing the YOD so as to minimize the impact on their children, creating divergent experiences of the YOD on family life. Facilitating family members' articulation of what feel like “inadmissible” feelings, improving familial communication, and developing a range of support and resources are all important areas for intervention.
Background: Families do not fully disengage from care responsibilities following relatives' admissions to residential long-term (RLTC) care settings such as nursing homes. Caregiver stress, depression, or other key outcomes remain stable or sometimes increase following a relative's RLTC entry. Some interventions have attempted to increase family involvement after institutionalization, but few rigorous studies have demonstrated whether these interventions are effective in helping families navigate the potential emotional and psychological upheaval presented by relatives' transitions to RLTC environments. The Residential Care Transition Module (RCTM) provides six formal sessions of consultation (one-to-one and family sessions) over a 4-month period to family caregivers who have admitted a relative to a RLTC setting. Methods: In this embedded mixed methods randomized controlled evaluation, family members who have admitted a cognitively impaired relative to a RLTC setting are randomly assigned to the RCTM (n = 120) or a usual care control condition (n = 120). Primary outcomes include reductions in family members' primary subjective stress and negative mental health outcomes; secondary role strains; and residential care stress. The mixed methods design will allow for an analysis of intervention action mechanisms by "embedding" qualitative components (up to 30 semi-structured interviews) at the conclusion of the 12-month evaluation. Discussion: This evaluation will fill an important clinical and research gap by evaluating a psychosocial intervention designed for families following RLTC admission that determines whether and how the RCTM can help families better navigate the emotional and psychological challenges of residential care transitions. Trial registration: ClinicalTrials.gov (NCT02915939, prospectively registered).
This article presents a comprehensive conceptual framework designed to foster research in the changing needs of caregivers and persons with dementia as they move through their illness trajectory. It builds on prior theoretical models and intervention literature in the field, while at the same time addressing notable gaps including inadequate attention to cultural issues; lack of longitudinal research; focus on primary caregivers, almost to the exclusion of the person with dementia and other family members; limited outcome measures; and lack of attention to how the culture of health care systems affects caregivers' quality of life. The framework emphasizes the intersectionality of caregiving, sociocultural factors, health care systems' factors, and dementia care needs as they change across time. It provides a template to encourage longitudinal research on reciprocal relationships between caregiver and care recipient because significant changes in the physical and/or mental health status of one member of the dyad will probably affect the physical and/or mental health of the partner. This article offers illustrative research projects employing this framework and concludes with a call to action and invitation to researchers to test components, share feedback, and participate in continued refinement to more quickly advance evidence-based knowledge and practice in the trajectory of dementia caregiving.
Aim To assess the effectiveness of psychoeducational interventions with respect to burden, anxiety and depression in family caregivers of People With Dementia living at home. Background In dementia, the family assumes the role of main caregiver, maintaining the patient in a good state of health. Nevertheless, burden, anxiety and depression may have negative repercussions in caregivers. Therefore, professional supports through psychoeducational programmes are recommended as interventions for improving caregivers' health. Design A quantitative systematic review. Data Sources Electronic searches were performed in CINAHL/AMED/CENTRAL/Web of Science/LILACS/PUBMED from January 2005–August 2018. Review Methods The review was conducted using the JADAD scale to assess bias risk and the quality of the randomized controlled trials (RCTs) and the CONSORT instrument to assess study quality report. The extracted data were reviewed by independent reviewer pairs. The review was reported using PRISMA. Results A total of 18 RCTs met inclusion criteria. Seven were classified as Technology‐based Interventions and 11 as Group‐based Interventions. Conclusion Psychoeducational interventions for caregivers allow them to increase their knowledge of the illness, develop problem‐solving skills and facilitate social support. Technology‐based Interventions significantly affect burden while Group‐based Interventions affect anxiety, depression, insomnia and burden and quality of life and self‐efficacy. Impact Research findings can be used to classify caregivers in future interventions according to illness stage to obtain more precise results.
Digital technologies have the potential to assist people with dementia to monitor day to day activities and mitigate the risks of living independently. This purposive pilot study surveyed participants for frailty, wellbeing, and perceived carer burden using the 3Rings(TM) digital plug. 30 paired participants used the digital device for four months. People with dementia reported a decline in wellbeing and increased frailty. Family carers reported a decline in wellbeing but 18 reported a reduction in burden. The use of digital monitoring by family carers demonstrated a reduction in their perceived burden and the device was acceptable to people with mild dementia living alone.
Neurodegenerative diseases such as Parkinson's and dementia are highly prevalent worldwide. People who suffer from these disorders often receive in-home care and assistance from family members, who must dedicate a considerable amount of time to the care recipient. The study of family caregivers' psychosocial adjustment to the degenerative processes of both conditions is of interest due to the implications for the quality of life of both the care receiver and the caregiver, as well as other family members. This study compares the psychosocial adjustment of family members who care for people with dementia and Parkinson's disease and identifies the main sociodemographic variables that affect the processes of adjustment to both conditions. To this end, the Psychosocial Adjustment to Illness Scale (PAIS-SR) and a sociodemographic form were administered to 157 family caregivers in Navarre, Spain. The results show that adjustment to the disease in family caregivers of people with Parkinson's disease and dementia is, in general, satisfactory and related to variables such as place of residence, income, and employment status. The illness itself (Parkinson's or dementia), however, is found to be the most influential variable in the level of psychosocial adjustment.
Background: Alzheimer's disease is commonly seen in older people in China,in particular,its prevalence reaches 5.14% in those aged over 65 years,bringing huge management burden to primary family caregivers of the patient. It has received extensive attention worldwide. Objective: To investigate the sources of management burden and major solutions among primary family caregivers of the Alzheimer's disease patient, providing a basis for further development of the family management system for such patients. Methods: By use of purposive sampling,the primary family caregivers of 12 re-examined outpatients with Alzheimer's disease were recruited from Hangzhou Seventh People's Hospital and Zhejiang Provincial Hospital of TCM from September to December 2018 were recruited,and were interviewed intensively using a phenomenological approach. Colaizzi's seven-step analysis was performed to analyze the interview results. Results: Five subthemes of management burden sources of the primary family caregivers for the Alzheimer's disease patient were summarized as follows: lack of sufficient care knowledge to cope with the patient's complex conditions, social burden, emotional burden, physical burden and unappreciated care. For the solutions to the management burden, two themes of caregiver self-management strategies and patient family management strategies with six subthemes such as rational acceptance and active accommodation and so on arose. Conclusion: Medical professionals and others need to provide effective emotional support and adequate care knowledge for primary family caregivers for the Alzheimer's disease patient to help them form effective family management strategies. At the same time, the diversified long-term care system should be improved to reduce the burden of care.
Background and Objectives Improving quality of life for community-dwelling older persons with dementia symptoms (PWDS) and family caregivers requires promoting dementia-friendly communities (DFC). However, little is known regarding older Taiwanese Aboriginal PWDS' experiences of living in the community. We explored these experiences for older Atayal PWDS and their families in Taiwan. Research Design and Methods This grounded theory research used in-depth interviews to explore the perspectives of older PWDS (n = 4), their family members (n = 3), and key persons (n = 10) in an Atayal community in northern Taiwan. Data were analyzed using constant comparative analysis. Participants were interviewed between January and May 2015. Results Participants' experiences were captured by the overarching concept of "low dementia awareness, high family-like ambience in the community." Despite the low/absent community awareness of dementia, older Atayal PWDS functioned as freely in the community as at home due to a family-like supportive environment. Aboriginal PWDS and their families also faced environmental challenges, e.g., environmental constraints and barriers to transportation access. Discussion and Implications Our results suggest that this Aboriginal community and culture offer important DFC components, and these strengths could be further studied to enhance DFC models elsewhere. Despite these strengths in supporting PWDS, environmental challenges to transportation access still cause difficulties for PWDS and their families and need improvement. The Atayal community's low dementia awareness suggests that services introduced must be culturally appropriate and nondisruptive to existing supportive helping systems. Our study can be a model for future studies to understand and identify PWDS' needs in Indigenous communities.
Restrictions related to the 2019 novel coronavirus (COVID-19) pose unique and significant challenges for community-dwelling caregivers and people with dementia, including disrupted routines, a lack of structure, decreased access to respite care, and new or worsening safety issues related to interpersonal violence and hygiene. In addition to identifying issues confronting caregivers, the authors also describe possible ways to address some of these pressing concerns.
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.
Mindfulness‐based stress reduction (MBSR) developed by Jon Kabat‐Zinn has shown to assist carers cope with their stress when they feel overwhelmed by the responsibility of care. The authors in this Cochrane review aimed to evaluate the evidence supporting the use of MBSR for reducing the psychological distress among carers looking after their family members with dementia.
Despite an increasing number of sources providing information and advice about dementia, those living with the condition feel inadequately informed. The reasons for this remain unclear. This study has three aims: to identify where people with dementia and their carers currently access dementia-related information from; to determine how accessible, credible and comprehensible people with dementia and their carers consider the available sources of information; and to determine how people with dementia and their carers would like to receive information. An online or postal survey was completed by 171 female and 41 male participants with a close family member or friend with dementia. Accessibility above quality held the greatest influence over an individual’s use of an information source. Participants preferred relational sources such as healthcare professionals as these were able to give individualised information, yet these were poorly accessible and lacked dementia specific knowledge. Therefore, individuals used non-relational sources such as the internet. However, increased use of the internet was linked to feeling overwhelmed by information. It was not the end result of the information search but the effort taken to reach the information that influenced participant’s perception of information gathering. Future research should look at ways of designing and providing accessible information sources that act and feel like relational contact.
Background Alzheimer's disease and related dementias are associated with increasing health burden in low- and middle-income countries. Less well-recognized is the potential health burden experienced by other affected individuals, such as family caregivers. In this study, we sought to profile the burden of care and its association with symptoms of depression and anxiety among informal caregivers of people living with dementia in rural southwestern Uganda. Method We conducted a cross-sectional study of 232 family caregivers of people with dementia. The key measured variables of interest were caregiving burden (Zarit Burden Index) and symptoms of depression and anxiety (Depression Anxiety Stress Scales). We fitted multivariable regression models specifying depression and anxiety symptoms as the primary outcomes of interest and caregiving burden as the primary explanatory variable of interest. Results Family caregivers of people with dementia experience significant caregiving burden, with each item on the Zarit Burden Index endorsed by more than 70% of study participants. Nearly half [108 (47%)] of caregivers had Zarit Burden Interview scores >60, suggestive of severe caregiving burden. In multivariable regression models, we estimated a statistically significant positive association between caregiving burden and symptoms of both depression [b = 0.42; 95% confidence interval (CI) 0.34-0.49] and anxiety (b = 0.37; 95% CI 0.30-0.45). Conclusion Family caregivers of people with dementia in rural Uganda experience a high caregiving burden, which is associated with symptoms of depression and anxiety. Interventions aimed at reducing caregiving burden may have important collateral mental health benefits.
Background and Objectives By shedding light on the reasons why persons with a migration background (PwM) may take up the role of family caregiver of a person with dementia, and how this relates to gender norms, we aim to elucidate cultural and social dynamics that impede care sharing. Research Design and Methods A qualitative study of 12 PwM who provide care, or have recently provided care, for a family member with dementia was conducted through semi-structured interviews. Identified themes and patterns were analyzed with the help of Hochschild's interpretive framework of framing and feeling rules. Findings Our findings illuminate how motivations to provide care are framed through two moral framing rules, reciprocal love and filial responsibility, and how these framing rules are accompanied by the feeling rule of moral superiority over non-caregiving family members. We show how shared dementia care is impeded though these moral framing and feeling rules, and how gender norms impact on an unequal distribution of care-tasks. Implications Healthcare practitioners should identify the moral dialectics of caregiving. This means that, on the one hand, they should be aware that moral framing rules may pressure women into exclusive caregiving, and that this can lead to health problems in the long term. On the other, healthcare practitioners should recognize that providing care can create a deep sense of pride and moral superiority. Therefore, showing acknowledgement of the caregiver contribution is a crucial step in creating trust between the caregiver and healthcare practitioner. Furthermore, asking for support should be normalized. Governmental advertisements on care–support can achieve this.
This briefing summarises the findings of a study into whether there is a universal optimal time for people living with dementia to move to a care home. The research drew on the experiences of people living with dementia and family carers, as well as social workers and care home managers. It found that factors to consider include the wellbeing of the person living with dementia, the ability of family members to support them and the availability of suitable care home places.
This scoping review comprehensively describes evidence of using peer support to assist informal carers of individuals with dementia (any type). A systematic search of 11 databases (CINAHL, Cochrane Library, Medline, Embase, PsychInfo, Web of Science, Scopus, Science Direct, ProQuest, TRIP and PubMed) was conducted for research published between 2007-2017 focussing on informal dementia carers, and research designs with interventions incorporating or consisting exclusively of peer support. Authors worked independently to screen retrieved articles, review applicability and extract data. Thirty-six research papers (representing 28 original studies) were identified, from these, two modes of delivery were demonstrated: 12 studies provided the intervention online, and the remainder face-to-face. The review indicated that peer support is of potential benefit to carers if it is delivered via either mode. It is not clear what components may or may not be effective as results provided a mixed landscape of differing intervention effectiveness due to the wide variation in outcome measurements. Trial design using a multi-component intervention was the predominant choice, with the most common components being Information Sharing and Non-Healthcare Professional Support for both delivery modes. The burden/anxiety/depression compendium and health and well-being were the most frequently measured outcomes; perceived level of support was one of the least. The peer support interventions identified included various components, demonstrating no true best practice model. Nonetheless, they can be offered successfully online or face-to-face. This provides a unique opportunity to develop and supply tailored peer support interventions for informal dementia carers to ensure their specific needs are met. Further work is required to construct and evaluate the effectiveness of targeted peer-led support whether online or face-to-face to meet the individual needs of dementia carers.
Objectives: Family caregivers (defined broadly as family and friends) of persons with dementia are challenged to cope with myriad stressors and changes that occur along the dementia trajectory. The purpose of this study was to explore the transitions experienced by caregivers of persons with dementia after their relative relocated to a 24-hour care home. Method: Qualitative thematic and conversational analysis were used: themes were co-created and modes of speech and syntactical patterns analysed to expose discourses related to caregiving after placement in 24-hour care homes. Results: Four main themes were co-constructed from the data analysis: living with loss, relinquishing, redefining the caregiving role, and rediscovering and recreating a new self. Discussion: Caregiving continues after placement of family members with dementia in 24-hour care homes. Caregivers are at-risk group and require ongoing support throughout the caregiving journey. Study participants reported that navigation skills such as relationship building, communication, and advocacy were particularly salient to the post-placement period, when navigating the complex health care environment was a significant obstacle. Ultimately, findings from these focus groups will be used to inform an online intervention to support caregivers of a family member with dementia residing in a 24-hour care home.
Background: Communication and empathy are considered as key competences in the care of persons with dementia. Virtual reality might be an effective intervention to train informal and professional caregivers of persons with dementia in order to improve their communication skills and empathy.; Objectives: The aim of this study was to map the use and impact of virtual reality simulation in dementia care education.; Method: A scoping review was performed. Studies with all types of qualitative or quantitative design published since 2007 in English, French or German were included if a virtual reality intervention was examined in a dementia care education setting (e.g. nursing school, caregiver training). The literature search was conducted in six databases (MEDLINE, CINAHL, PsycINFO, Web of Science Core Collection, ERIC, and Inspec), including an additional hand search as well as backward and forward citation tracking of included studies. Charted data was narratively reported by clustering results according to study characteristics and impact of virtual reality.; Results: The review process resulted in the inclusion of six studies published between 2012 and 2017. Two of them are ongoing studies. Three studies had a one group pre-post-test design and in one study a post-test only design was applied. The samples consisted of caregivers of people with dementia as well as students and varied in size between seven and 126. Eight different outcomes were measured, e.g. empathy, competence, and stress. Interventions resulted in improvements of caregivers' and students' empathy and competences among other outcomes.; Conclusions: No studies with controlled design and group comparisons are available yet. There are some indications that virtual reality might be an effective intervention to train caregivers of persons with dementia. Little is known about the use and impact of virtual reality in dementia-related education. Since studies are rare and do not address effectiveness, the findings of this review can substantially contribute to guide further research on this topic.
Background: Assistive technology (AT) is rapidly emerging within dementia care and support. One area of AT application is support of people with dementia in compensating for cognitive symptoms and thereby promoting their self-management. There is, however, little evidence for the applicability, usability, and effectiveness of AT for people with dementia, and there is a need to identify factors that can promote adoption.; Objective: This study aimed to (1) evaluate the applicability and usability of an app, tailor-made for people with dementia; (2) explore factors affecting adoption; (3) explore the possible influence of caregiver involvement; and (4) contribute to process evaluation of the intervention.; Methods: The ReACT (Rehabilitation in Alzheimer's disease using Cognitive support Technology) app was designed as a holistic solution to support memory and structure in daily living. Persons with dementia had access to a personal user account, and family caregivers were given a parallel login. Written and Web-based materials were provided to support self-applied implementation. A mixed methods design was applied to explore adoption and use patterns, including background and disease-related data, qualitative data from a survey, and log data. Adoption was defined as the use of the app over a period of ≥90 days.; Results: Data from 112 participants and 98 caregivers were included. Shorter time from diagnosis (U=595; P=.046; r=0.19) and caregiver activating the app (P=.02) had a significant impact on the participant adoption status. Logistic regression analysis showed that if caregivers had activated the app, the participant was five times more likely to become an adopter (odds ratio 5.1, 95% CI 1.29-19.99; P=.02). However, the overall predictive power was low, and there was a wide variation in background and disease-related characteristics among adopters. The level of experience and skills in tablet use were not significantly different between adopters and nonadopters. Adopters generally rated the app high on usefulness, satisfaction, and ease of use (rated on the USEdem questionnaire). Their scores were significantly higher compared with nonadopters (U=5.5; P=.02; r=0.64). Analysis of use patterns showed that all functionalities of the app were used among adopters.; Conclusions: For participants who became adopters, the ReACT app and the methods for self-applied implementation were applicable. However, the results were also in accordance with the well-known challenges of nonadoption and nonadherence to digital health interventions. The study provided insight into the importance of timely introduction and caregiver support for adoption of AT among people with dementia. It also underlined the high complexity of personal and contextual factors that influence adoption. These complex factors need to be considered when designing and implementing AT for people with dementia.
Self-management support for people with dementia is important to help them and their family caregivers to cope with challenges in daily live. Insight into the effects of self-management support interventions on people with dementia is however lacking, despite existing relevant systematic reviews. We therefore conducted a meta-review of relevant systematic reviews, following the PRISMA statement. Systematic literature searches were conducted in PubMed, CINAHL, the Cochrane Library, Embase and PsycINFO. The searches were done in December 2015, and all relevant references until then were taken into consideration. No conclusions about the effects of self-management support interventions on people with dementia could be drawn. Recommendations for future research and practice include that self-management support interventions and effect measurements should be wider in scope than psychological well-being.
Introduction: Dementia is considered as a serious threat for over 65years old population, because of its high prevalence rates. Dementia with a complex and multifaceted nature has negative effects on patients, family members, and their caregivers' psychological health and socioeconomic status. The current qualitative study is designed to investigate the stigma phenomenon to dementia in Iranian population. Methods: This qualitative research was conducted by the descriptive phenomenological method. In order to analyze the data, the Colaizzi's descriptive phenomenological method was used. The target population consisted of all patients with dementia and their family members in neurological clinics of Tehran. We interviewed with patients and one of the main family members until data saturation. Participants included the main family members (spouse and children) of people with dementia (nine women and six men) who were selected by a nonrandom purposeful sampling method. Results: Two main themes emerged from data analysis: dysfunctional beliefs and negative social attitudes. Each main theme integrates the classes and clusters which are constituted by formulated meanings. Conclusion: Dimensions of stigma, such as dysfunctional beliefs and negative social attitudes, in addition to undesirable effects on patients and caregivers lives, is considered as a serious obstacle to effective caring and providing a good quality of life. It can be concluded that, higher levels of awareness, management, and coping with this powerful phenomenon are capable of preventing, rehabilitation, and improving the psychosocial health in elderly population.
Background: Tailoring interventions to the needs of caregivers is an important feature of successful caregiver support programs. To improve cost-effectiveness, group tailoring based on the stage of dementia could be a good alternative. However, existing staging strategies mostly depend on trained professionals. Objective: This study aims to stage dementia based on caregiver reported symptoms of persons with dementia. Methods: Latent class analysis was used. The classes derived were then mapped with disease duration to define the stages. Logistic regression with receiver operating characteristic curve was used to generate the optimal cut-offs. Results: Latent class analysis suggested a 4-class solution, these four classes were named as early (25.9%), mild (25.2%), moderate (16.7%) and severe stage (32.3%). The stages based on the cut-offs generated achieved an overall accuracy of 90.8% compared to stages derived from latent class analysis. Conclusion: The current study confirmed that caregiver reported patient symptoms could be used to classify persons with dementia into different stages. The new staging strategy is a good complement of existing dementia clinical assessment tools in terms of better supporting informal caregivers.
Aim and objectives: The aim of this study was to explore family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities. Background: Dementia not only affects individuals but also affects and changes the lives of close family members. An increasing number of dementia-related deaths occur in long-term care facilities; therefore, it is critical to understand how healthcare professionals support and care for residents with dementia and their families at the end of life. Design: A qualitative design with a phenomenological approach was adopted. Methods: In-depth interviews were performed with 10 family caregivers of residents in 3 Norwegian long-term care facilities. Results: The family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities were characterized by responsibility and guilt. Admission to a long-term care facility became a painful relief for the family caregivers due to their experiences with the poor quality of palliative care provided. The lack of meaningful activities and unsatisfactory pain relief enhanced the feelings of responsibility and guilt among the family caregivers. Despite the feelings of insecurity regarding the treatment and care given during the early phase of the stay, the family caregivers observed that their close family member received high-quality palliative care during the terminal phase. The family caregivers wanted to be involved in the care and treatment, but some felt that it became a heavy responsibility to participate in ethical decision-making concerning life-prolonging treatment. Conclusions: The family caregivers experienced ongoing responsibility for their close family members due to painful experiences with the poor quality of the palliative care provided. When their expectations regarding the quality of care were not met, the palliative care that was offered increased their feeling of guilt in an already high-pressure situation characterized by mistrust.
Background: Dementia is a serious and growing health problem, and since most people with dementia live at home, caring responsibilities generally fall on family members. Caregivers are often inadequately supported by formal health services and have poorer psychological and physical health. Our study aimed to compare the contributions of publications from different countries, institutions and authors and present a bibliometric analysis to determine the hotspots and trends in research concerning the health of and interventions for family dementia caregivers.; Methods: Studies published during 1988-2018 were extracted from the Science Citation Index Expanded of the Web of Science. Each abstract of publications was evaluated to obtain the basic information. A bibliometric analysis was used to evaluate the number or cooperation networks of publications, countries, institutions, journals, citations, authors, references, and keywords. The resulting articles were analyzed descriptively, and the publication keywords were visualized using VOSviewer.; Results: Five hundred forty-two articles were identified. The annual number of relevant publications has steadily increased since approximately 2006. The USA has the highest number of publications (36.2%), followed by the UK (12.9%). China entered the field late, but research conducted in China has rapidly developed. The most productive institution, journal, and author in this field are University College London, the Journal of the American Geriatrics Society, and Orrell M from the UK, respectively. A co-occurrence analysis of the keywords reveals a mainstream research focus on burden, depression, quality of life, and corresponding interventions for people with dementia caregivers. The keywords "psychosocial intervention", "long-term", "e-learning/online", "communication", and "qualitative research" reflect the latest hotspots, appearing in approximately 2017-2018.; Conclusion: Our study details the performance statistics, main topics and trends research on the health of and interventions for dementia caregivers from 1988 to 2018 and provides a comprehensive analysis.
Persons living with dementia and their carers experience stigma. Stigma intensifies social exclusion and threatens health and well-being. Decreasing stigma associated with dementia is a public health priority across national and international settings and is a key component of National Dementia Strategies. Research-based drama is an effective public health strategy for reducing stigma and enhancing well-being. In this article we focus on survey data from an evaluation of a research-based drama called Cracked: new light on dementia. Our analysis illustrates the effectiveness of Cracked in reducing stigma by: decreasing health care practitioners' and family carers' prejudice, fostering critical reflection about relational practices, and fostering a commitment to individual and collective action to address stigma. Cracked is well-positioned to respond to urgent calls for culture change, which include reducing societal misconceptions and stereotypes around dementia and promoting inclusive and meaningful engagement of persons living with dementia across all levels of society.
Objective:This study aimed to review and synthesize findings of the effectiveness of psychosocial interventions aimed at improving outcomes for family carers of people with dementia. Method: A systematic review and meta-analysis were conducted according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We systematically searched the following databases: Cochrane, PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycInfo, Excerpta Medica Database (EMBASE), and Applied Social Sciences Index and Abstracts (ASSIA). RevMan 5 software was used to conduct meta-analysis and subgroup analysis using a random-effects model. Results: The search yielded 22 high-quality intervention articles that were suitable for further meta-analysis. Meta-analysis revealed that psychosocial interventions have a small to moderate significant effect on carer burden (standardized mean difference [SMD] = -0.34, confidence interval [CI] = [-0.59, -0.09]), depression (SMD = -0.36, CI = [-0.60, -0.13]), and general health (SMD = 0.34, CI = [0.18, 0.51]). Discussion: Psychosocial interventions had a positive impact on carer outcomes; however, these results should be interpreted with caution, given the significant level of heterogeneity in study designs. Future research could examine contextual and implementation mechanisms underlying psychosocial interventions to develop effective support systems for family carers of people with dementia.
Objectives Caregiving to individuals affected by Alzheimer's disease and related dementia (ADRD) is a family-systems process where tasks are distributed between multiple caregivers in a network. We evaluate the extent to which multiple network members nominate one another as filling primary caregiver (PCG) roles and factors associated with nomination. Method Data come from the Caregiving Roles and Expectations Networks project, which aimed to characterize the caregiving networks of families affected by ADRD. All persons affected by ADRD were either full-time residents in residential care facilities or community-dwelling adult day-care participants. Generalized Poisson regression was used to model the count of incoming PCG nominations of each network member. Results On average, there were multiple network members identified as PCGs across different network contexts. Network members who were perceived to perform essential caregiving tasks, such as making decisions on behalf of and spending time with the care recipient, received more primary caregiving nominations from their network peers, adjusting for personal attributes, and the context of care. Discussion Having multiple PCGs in a network may result in lack of consensus in who fills those roles, potentially putting families at risk for interpersonal conflicts. Future work aimed at intervention development should fully assess the social contexts surrounding caregiving processes in order to better understand how network composition might impact outcomes.
Caring for an older family member with dementia can be extremely challenging, often resulting in diminished psychological well-being. A wide range of both internally and externally directed behavioral strategies may serve to protect well-being among caregivers. Specifically, primary control strategies involve direct attempts to change one's current situation, while secondary control strategies are attempts to inwardly adjust cognitions to align with the current situation. This study examined the use of multiple primary and secondary control strategies among familial caregivers (n = 110), as well as their associations with several indices of psychological well-being. Results showed that the most common primary and secondary control strategies, namely task persistence and positive reappraisal, were used with approximately equal frequency. Furthermore, the specific strategy of positive reappraisal seemed to bolster psychological well-being among caregivers. Findings indicate that primary control strategies might be less effective than secondary control strategies within the context of caregiving for a person with dementia.
Although there are a number of support services accessible for most family dementia caregivers, many caregivers reject available and affordable support. Previous research suggests that rejections of support services may result from insufficient fit of available services with caregivers’ unmet needs and a lack of acknowledgement of caregivers’ unmet needs and associated support services. The present study investigates (a) the number, proportion and types of caregivers’ rejection on recommended tailored support, (b) socio-demographic and clinical determinants of caregiver’s rejection of both people with dementia (PwD) and caregivers, and (c) caregivers’ health-related variables related to caregivers’ rejection.
While informal caregivers often feel burdened by the care for a person with dementia, they can also experience positive consequences due to caregiving; caregiver gains. One of these, relatively overlooked, caregiver gains is heightened self-esteem. We assessed the predictive ability of non-modifiable (caregiver sociodemographic- and dementia related-) and modifiable (psychological-) factors for caregiver self-esteem). A cross-sectional study in which 201 caregivers, who spent at least eight hours a week on caring for a community-residing person with dementia, completed a semi-structured interview and five questionnaires. One two-block (1: non-modifiable-; 2: modifiable variables) hierarchic multiple regression analysis was used to assess which variables predicted self-esteem. None of the non-modifiable variables significantly predicted self-esteem. Regarding the modifiable variables, depression and relationship quality with the person with dementia significantly predicted self-esteem (adjusted R2 = .460, β = -.207, p = .015 and β = .632, p < .001 respectively). Caregivers who experience a better relationship quality with the person with dementia, and fewer depression symptoms, experience a higher level of self-esteem. Interventions focused on heightening self-esteem should strive to optimize these factors to enhance the lives of informal dementia caregivers.
This cross-sectional study explored factors affecting information about available health services, content of services provided, and involvement in decisions regarding services as perceived by the family caregivers of home-dwelling persons with dementia in Northern Norway. Altogether, 788 family caregivers were invited to participate in a survey, with a response rate of 54.6% (n = 430). The respondents reported modest levels of perceived information and involvement. Few of the expected predictors were associated with the outcomes. Ordinal logistic regression analyses revealed that primary school as the highest level of education and perception of caregiving as moderately or very demanding predicted lower scores on family caregivers' perceived level of information about available services, information on service content, and involvement in decisions. In addition, medium household income predicted lower scores on information about service content. The results may point to mechanisms that create inequalities in the processing of information and involvement in care decisions regarding care arrangements among different caregiver groups. Health authorities should investigate potential social inequalities in complementary health care for home-dwelling persons with dementia.
Objective: The aim of the present work was to study the serial multiple mediating role of optimism, perceived social support and subjective burden in the relationship between objective burden and psychological distress in caregivers of people with Alzheimer´s Disease (AD). Method: One hundred and forty family caregivers of people living with AD were recruited from randomly selected Alzheimer Association Centres. They answered the General Health Questionnaire (GHQ), the Life Orientation Test-Revised (LOT-R), the Functional Social Support Questionnaire (DUKE.UNC), the Zarit Burden Interview (ZBI) and questions relating to gender, age and the amount of time spent on daily caregiving. Results: Results indicated that objective burden and subjective burden were both high in these caregivers. Optimism mediated on psychological distress through social support and through subjective burden with a full mediation role. When comparisons between indirect effects were performed, optimism was the mediator with the greatest effect between objective burden and psychological distress. Conclusion: This study highlights the indirect role of optimism and the advantages that interventions in optimism training in the early stages of the person with AD could produce. Thus, alleviating subjective burden and increasing perceived social support, which would lead to an improvement in the mental health of family caregivers of people with AD.
Background: Informal caregivers (IC) of people with dementia (PwD) are at greater risk of developing physical and mental health problems when compared to the general population and to IC of people with other chronic diseases. Internet-based interventions have been explored for their potential to minimize the negative effects of caring, accounting for their ubiquitous nature, convenient delivery, potential scalability and presumed (cost) effectiveness. iSupport is a self-help online program developed by the World Health Organization (WHO) to provide education, skills training and support to IC of PwD. This paper describes the design of an intervention study aimed at determining the effectiveness of a Portuguese culturally adapted version of iSupport on mental health and other well-being outcomes.; Methods: The study follows an experimental parallel between-group design with two arms: access to the five modules and twenty-three lessons of "iSupport" for three months (intervention group); or access to an education-only e-book (comparison group). One hundred and eighty four participants will be recruited by referral from national associations. Inclusion criteria are: being 18 years or older and provide e-consent; being a self-reported non-paid caregiver for at least six months; of a person with a formal diagnosis of dementia; being skilled to use internet; and experience a clinically relevant level of burden (≥ 21 on Zarit Burden Interview) or depression or anxiety symptoms (≥ 8 on Hospital Anxiety and Depression Scale). Data is collected online, resorting to self-administered instruments, at baseline, 3 and 6 months after baseline. The primary outcome is caregiver burden, measured by the Zarit Burden Interview. Symptoms of depression and anxiety, quality of life, positive aspects of caregiving and general self-efficacy are secondary study outcomes. The data analysis will follow an Intention-to-treat (ITT) protocol.; Discussion: This protocol is an important resource for the many organizations in several countries aiming to replicate iSupport. Findings from this intervention study will offer evidence to bolster an informed decision making on scaling up iSupport as a new intervention program with minimal costs aimed at minimizing the psychological distress of IC of PwD in Portugal and elsewhere.; Trial Registration: ClinicalTrials.gov, NCT04104568. Registered 26 September 2019.;
Caregiving burden significantly effects the physical and mental health of family dementia caregivers. While the association between objective caregiving burden (OCB) and subjective caregiving burden (SCB) of family dementia caregivers is well documented, little is known as with how the association is moderated by the configuration of intrapersonal resource (e.g., immanent justice reasoning) and interpersonal resource (e.g., social support). The present study collected cross-sectional data on 157 major family caregivers of non-institutionalized persons with dementia in an urbanizing region of Western China's Sichuan Province. They responded to questions on daily time spent on caregiving, the short version of Zarit Burden Interview (ZBI), a sub-scale of a caregiver meaning scale, Social Support Rating Scale (SSRS), and demographic questions. Controlling for the demographic variables of the caregivers, this study found that the objective and subjective dementia caregiving burden were significantly associated (p < 0.001), and immanent justice reasoning was positively correlated with subjective burden (p < 0.01). Moreover, the association between OCB and SCB was significantly positive when social support and immanent justice reasoning were both high (p < 0.001), but neutral when social support was high and immanent justice reasoning was low. The association between OCB and SCB was significantly positive when social support and immanent justice reasoning were both low (p < 0.05), but neutral when social support was low and immanent justice reasoning was high. This research suggests the importance of developing intervention programs that consider the configuration of the external supporting resources and internal meaning-making of caregiving of the family dementia caregivers.
Introduction: The End-of-Life Namaste Care Program for People with Dementia, challenges the misconception that people with dementia are a 'shell'; it provides a holistic approach using the five senses, which can provide positive ways of communicating and emotional responses. It is proposed Namaste Care can improve communication and the relationships families and friends have with the person with dementia. Previously used in care homes, this study is the first to explore the pioneering use of Namaste Care in people's own homes.; Objective: To develop initial programme theories detailing if, how and under which circumstances Namaste Care works when implemented at home.; Design: A qualitative realist approach following the RAMESES II guidelines was employed to understand not only whether Namaste Care has positive outcomes, but also how these are generated, for whom they happen and in which circumstances.; Setting: A hospice in the North East of England, operating in the community, through volunteers.; Participants: Programme theories were developed from three focus groups with volunteers implementing Namaste Care (n=8; n=8; n=11) and eight interviews with family carers (n=8).; Results: Four refined explanatory theories are presented: increasing engagement, respite for family carers, importance of matched volunteers and increasing social interaction. It was identified that while Namaste Care achieved some of the same goals in the home setting as it does in the care home setting, it could also function in a different way that promoted socialisation.; Conclusions: Namaste Care provides holistic and personalised care to people with both moderate and advanced dementia, improving engagement and reducing social isolation. In the present study carers often chose to use Namaste Care sessions as respite. This was often linked to their frustration of the unavoidable dominance of task-focussed care in daily life. Individualised Namaste Care activities thus led to positive outcomes for both those with dementia and their carers.
The number of people living with dementia is rising due to the aging of the population. Nearly two thirds of people with dementia live at home and the majority of the emotional and practical support that they receive is provided by family carers. Psychodynamic perspectives provide a valuable framework of understanding from which to consider the emotional dimensions of caring for a family member who is living with dementia. This paper offers a further contribution to this emerging field of knowledge by discussing the impact that mentalizing and non-mentalizing states of mind may have on the dynamics of the relationship between a person with dementia and their family carers. The potential benefits of using mentalization-based understandings are illustrated by four case vignettes. The vignettes are taken from a communication skills training course for family carers called Empowered Conversations and a web-based support initiative called Empowered Carers, which is targeted at family carers who provide intensive support for people living with dementia in their own homes.
The aim of this article was to present the preliminary results of a training programme for family caregivers of people with dementia at an early to moderate stage living at home - 'Living Together With Dementia'. In this randomised controlled trial, 27 family caregivers who met the inclusion criteria were recruited from the neurology outpatient consultation clinic of a hospital in the north of Portugal and randomised into two groups (control and experimental) between October 2015 and March 2016. The programme 'Living Together With Dementia' was applied to the participants of the experimental group. The strategies used, overload, difficulties and satisfaction of the caregivers were assessed at three different stages (at the beginning and end of the intervention, as well as at follow-up). For the data analysis, quantitative parametric measures were applied. The Health Ethical Commission of the Hospital Centre approved the study, and its protocol and Helsinki Declaration ethical principles were considered throughout the process. In the final assessment, an improvement in the overload and difficulties was confirmed, as was an increase in the caregivers' satisfaction level and an improvement in coping/problem-solving strategies. In the follow-up stage, the results tended to revert towards those of the initial assessment. The programme 'Living Together With Dementia' appeared to be a major contribution enabling family caregivers of people with dementia, although there is a need to develop an efficacy study using a more substantial sample. The programme contributed to a reduction in the overload and difficulties borne by the family caregivers of people with dementia at an early to moderate stage living at home and to increased caregiver satisfaction.
Spousal caregivers draw upon understandings of shifting relationality to maintain a familial understanding of their spouse with Alzheimer's disease. Working through what it means to think of an adult with Alzheimer's disease "like a child," I trace how spouses negotiate their shifting relationships across the course of Alzheimer's. While regarding adults as childlike can be perceived as dehumanizing infantilization, for families living with Alzheimer's disease, conceiving of one's spouse as like a child can actually enable processes of continued care, sustained recognition, and love to uphold personhood in the midst of often radical change.
The Kintun program is the first public health strategy specifically designed for dementia care in Chile. It was launched in 2013 in the city of Santiago with support from the National Service for the Elderly and the Municipality of Peñalolén. Using an interdisciplinary team, the program seeks to promote community integration and better support for persons with dementia and their caregivers. The multicomponent program includes: an activity-based day care center, training and education of family caregivers, home visits, and community outreach to increase dementia awareness. Case management helps to monitor ongoing needs and link families to resources. To date, 259 dyads (persons with dementia and their families) have been enrolled in the program. Due to its success in 2015, the Kintun program received funding from the Ministry of Health. This has led to the integration of previously disparate initiatives, better consistency across services, and the development of a comprehensive national dementia plan for Chile.
Technologies have emerged that aim to help older persons with Alzheimer's disease and related dementias (ADRDs) remain at home while also supporting their caregiving family members. However, the usefulness of these innovations, particularly in home-based care contexts, remains underexplored. The current study evaluated the acceptability and utility of an in-home remote activity monitoring (RAM) system for 30 family caregivers of persons with ADRD via quantitative survey data collected over a 6-month period and qualitative survey and interview data collected for up to 18 months. A parallel convergent mixed methods design was employed. The integrated qualitative and quantitative data suggested that RAM technology offered ongoing monitoring and provided caregivers with a sense of security. Considerable customization was needed so that RAM was most appropriate for persons with ADRD. The findings have important clinical implications when considering how RAM can supplement, or potentially substitute for, ADRD family care.
Objectives: Home dwelling people with dementia and their informal carers often do not receive the formal care services they need. This study examined and mapped the research regarding interventions to improve access and use of formal community care services. Method: This is a scoping review with searches in PubMed, CINAHL, PsychINFO, Medline, Cochrane Database of Systematic Reviews, Social Science Citation index and searches of grey literature in international and national databases. Studies were categorized according to the measure used to enhance access or use. Results: From international databases, 2833 studies were retrieved, 11 were included. Five studies were included from other sources. In total, 16 studies published between 1989 and 2018 were examined; seven randomized controlled trials, six pretest-posttest studies and three non-randomized controlled studies. Sample sizes varied from 29 to 2682 participants, follow-up from four weeks to four years. Five types of interventions were identified: Case management, monetary support, referral enhancing, awareness & information focused and inpatient focused. Only two studies had access or use of community services as the primary outcome. Fourteen studies, representing all five types of interventions, had positive effects on one or more relevant outcomes. Two interventions had no effect on relevant outcomes. Conclusion: The included studies varied widely regarding design, type of intervention and outcomes. Based on this, the evidence base for interventions to enhance access to and use of formal community services is judged to be limited. The most studied type of intervention was case management. More research is recommended in this field.
Objectives The burden often associated with informal caregiving for patients with dementia is associated with negative effects on health, both physiologically and in terms of caregiver cognition. There is wide variation in the level of burden experienced by dementia caregivers. To better understand caregiver burden, it is thus important to understand the factors associated with level of burden. Methods In the current study, we collected carer burden and putative associated factors at baseline, 6 and 12 months. Hierarchical regression was used to assess the impact of these factors on caregiver burden. We assessed self-reported carer burden, patient behavioural and safety issues, and level of difficulty associated with providing assistance with activities of daily living (ADL). Patients' age was also recorded, and trained nurses assessed patient cognitive performance using the quick mild cognitive impairment screen. Results At baseline, patients' age, cognition and ADLs were associated with burden, and safety and challenging behaviour were both significantly associated with burden independent of the other factors. Change in burden was associated with change in carer-reported safety at 6-month follow-up, and with change in safety and change in carer-reported challenging behaviours at 12-month follow-up. Conclusions Safety issues and challenging behaviours are associated with carer burden, even after accounting for cognitive and functional impairment in the person with dementia. As dementia progresses, monitoring these factors may help to inform stress-management strategies for caregivers.
Introduction: Living with a person with dementia (PWD) causes physical and psychological problems in family caregivers (FCGs), as well as a reduction in their Quality of Life (QOL). The purpose of this study was to examine the possible effectiveness of the therapeutic songwriting method for improving the QOL and well-being of FCGs of PWD. Methods: The sample of caregivers (n = 21) was divided into three homogeneous groups that received 12 intervention sessions. A non-randomized, quasi-experimental design with repeated measures (pre-post intervention) was employed to determine a possible therapeutic effect. The State-Trait Anxiety Inventory (STAI), Short-Form Health Survey (SF-36v2), Beck Depression Inventory, and Rosenberg Self- Esteem Scale were administered before and after the intervention. Results: The results showed a decrease in anxiety and depression scores and an increase in scores of self-esteem after the intervention. Regarding QOL, post-intervention scores in the Mental Component Summary and Mental Health were significantly higher. In contrast, a small effect size was observed for difference between pre-test and post-test on the subscales of QOL: General Health, Social functioning, Role Emotional and Bodily Pain. Discussion: This exploratory study concludes that therapeutic songwriting can help to reduce caregivers' symptoms of depression and anxiety and improve their perceived self-esteem and QOL. This work reinforces the progress made to date and provides new results that highlight the benefits of music therapy for FCGs of PWD.
Aim: Nurses are teachers to their patients and need to know best practices for diverse families living with dementia. Little is known about Hispanic beliefs around dementia knowledge and self-efficacy that may have an impact on the learning situation. Design: A pre-/postresearch design was used in this intervention study with a baseline assessment of dementia knowledge and caregiver self-efficacy and a reassessment at training completion. Methods: Investigation of education training with two caregiver groups caring for persons with dementia: Caucasian and Hispanic. Convenience sample consisted of 567 Caucasians and 104 Hispanic dementia caregivers. Groups received training in their primary language accompanied by a training book (Dealing with Dementia Guide) also in the primary language. Results: Dementia knowledge and caregiver self-efficacy increased in both groups with the Hispanic group demonstrating significantly greater increase in self-efficacy. The Caucasian group had a significantly greater increase in the dementia knowledge compared with the Hispanic group.
Objective: Both caregivers and the older adults they care for can experience declines in quality of life (QOL) over the course of the dementia trajectory. Little research has examined QOL in African-American caregivers and even less in African-American persons with dementia (PWDs), making it difficult to identify associated factors. Method: Guided by the Negro Family as a Social System framework, a secondary data analysis was used to examine the influence of family structure, instrumental and expressive role functions on QOL in a sample of 62 African-American dementia dyads (i.e. African-American PWDs and their African-American caregivers). Dyadic data were analyzed using multilevel modeling to control for the interdependent nature of the data. Results: On average, African-American PWDs reported significantly worse QOL than African-American caregivers. Within African-American dementia dyads, QOL covaried. African-American PWDs experienced significantly worse QOL when their caregiver was a non-spouse and they themselves perceived less involvement in decision-making. In addition, African-American caregivers experienced significantly worse QOL when they reported greater dyadic strain with the African-American PWD and were non-spouses of African-American PWDs. Conclusion: Findings suggest understanding the interpersonal characteristics (e.g., dyadic relationship, family structure and role functions) of dyads may hold promise for improving their QOL.
Objectives: The provision of information and referral (I&R) and connection to support services is crucial for individuals with Alzheimer's disease and related dementias (ADRD) and their informal caregivers, especially in rural and remote regions where care and support resources may be limited. The purpose of this study was to develop a deeper understanding of needs for I&R from community stakeholders across a rural and remote state. Methods: A series of town hall meetings were conducted across ten communities in a frontier state. Results: Participants were 175 adults with a mean age of approximately 60 years (SD = 15 years); a majority were non-Hispanic white, female, and self-identified as informal caregivers. Three themes emerged as primary areas of need: (1) to address stigma related to ADRD; (2) to improve the availability of dementia-related I&R; and (3) to efficiently disseminate dementia-related I&R. Conclusions: Findings suggest the importance of a single point of access for I&R with presence in local communities as well as initial and ongoing assessment and provision of appropriate I&R throughout the course of ADRDs. Clinical Implications: Existing community resources and funding support should be leveraged for multiple points and means of access to reliable I&R.
Purpose: This study aimed to examine the factors associated with the development of higher burden in informal caregivers of patients with dementia, using dyadic data.; Design and Methods: Seventy-two dyads of patients with dementia and their informal caregivers were assessed, the former in terms of behavioral-psychological symptoms and autonomy, the latter in terms of burden and individual needs.; Findings: Caregivers at risk for developing higher burden are those who are female, whose care recipient present psychiatric symptoms and lower autonomy, and those who recognize the need for more information/support.; Practice Implications: Interventions should offer caregivers the tools to provide care, maintaining their psychological well-being. Interventions should target not only common aspects of caregiver burden but also the specificities of caring for a person with dementia.
The role of caregivers is very important in the management of person with dementia, where it is not uncommon for them to experience psychological distress. However, the level of distress can be managed and reduced through strategic educational intervention. A systematic review has been conducted through searching Medline, Science direct, Cochrane library and EMBASE databases to provide a narrative synthesis that elaborate on methods and outcomes of the educational intervention among informal caregiver of person with dementia. From a total of 5125 records, eight studies were selected and included in this review, where the results show that educational intervention can be implemented either as individual or group intervention. Group intervention methods mainly focus on training programs such as workshops and lectures, and also group-based discussions. While for individual intervention, most of the activities were implemented through self-learning using technology or computer-based systems. In conclusion, based on the outcome of the studies, both methods of implementations are found to be useful in reducing psychological distress of the informal caregiver.
Objectives: Previously developed dementia caregiver profiles defined by caregiver age and burden, have been associated with caregiver quality of life, depression and perseverance time. The current aim was to investigate whether these caregiver profiles could predict subsequent service use. In addition, non-personal (e.g. meals on wheels) and supportive services (e.g. Alzheimer café) in early dementia were investigated as predictors. Methods: A total of 451 dyads of people with dementia and their informal caregivers from eight European countries were followed for one year. People were included if they did not use formal (personal) care but were expected to do so within 1 year. Logistic regression analyses were used with four clusters of service use as dependent variables (home social care, home personal care, day care and admission). The independent variables were caregiver profiles, and non-personal and supportive services at baseline. Results: Caregiver profiles were significant predictors of service use; those experiencing high strain were more likely to use formal care. The use of low-intensity, less intrusive services at baseline significantly predicted the use of home personal care and admission at follow-up. The use of day care at follow-up was predicted by the baseline use of supportive services. Conclusion: Caregiver profiles are valuable predictors for service use: this knowledge can aid professionals in ensuring optimal access to services, which is important for maintaining independence at home. In addition, the use of supportive and less intrusive, non-personal services in the early stages of dementia is to be advised.
Background: People with dementia and their relatives are faced with major challenges due to complex dementia symptoms. Families need information and counselling in order to find adequate dementia care services tailored to their needs. Aim: This case report's objective is to exemplify the domestic situation of a married couple who is faced with significant challenges within the family and the care system due to the husband's dementia and Parkinson's disease. Methods: The Dementia Care Nurse project included case monitoring; by means of different assessments relevant information was recorded and the family's situation described. Results: The family's problems and their need for support were multifaceted and entailed reimbursement of costs, application for care services as well as management of challenging behaviours and reduction of the caregiver's psychosocial burden. Conclusions: The family, particularly the spouse caregiver, was effectively supported in meeting the challenges of dementia, e. g. by drawing on professional services and sorting out entitlement to benefits. From the perspective of the experience in the project, independent counselling structures such as a case management approach are indispenable in order to stabilise the domestic situation.
Purpose: To build an evidence-informed theoretical model describing how to support people with dementia to live well or for longer at home.; Methods: We searched electronic databases to August 2018 for papers meeting predetermined inclusion criteria in two reviews that informed our model. We scoped literature for theoretical models of how to enable people with dementia to live at home independently, with good life quality or for longer. We systematically reviewed Randomised Controlled Trials (RCTs) reporting psychosocial intervention effects on time lived with dementia at home. Two researchers independently rated risk of bias. We developed our theoretical model through discussions with experts by personal, clinical and academic experiences, informed by this evidence base.; Results: Our scoping review included 52 studies. We divided models identified into: values and approaches (relational and recovery models; optimising environment and activities; family carer skills and support); care strategies (family carer-focused; needs and goal-based; self-management); and service models (case management; integrated; consumer-directed). The 11 RCTs included in our systematic review, all judged at low risk of bias, described only two interventions that increased time people with dementia lived in their own homes. These collectively encompassed all these components except for consumer-directed and integrated care. We developed and revised our model, using review evidence and expert consultation to define the final model.; Conclusions: Our theoretical model describes values, care strategies and service models that can be used in the design of interventions to enable people with dementia to live well and for longer at home.; Trial Registration: PROSPERO 2018 registration number: CRD42018099693 (scoping review). PROSPERO 2018 registration number: CRD42018099200 (RCT systematic review).
We investigated quality of life (WHOQoL-BREF), perceived stress (PSS-10), anxiety and depression (HADS-M), life satisfaction (SWLS), and serum levels of interleukin-6 (IL-6), C-reactive protein (CRP), and cortisol in family caregivers (n = 94) and professional caregivers (n = 48) of demented patients, as well as among noncaregivers (n = 30). Compared with professional caregivers, family caregivers had higher scores in HADS-M depression (P = .003) and anxiety (P = .033), lower life satisfaction (P = .04), and lower quality of life in psychological (P = .02) and social relationship (P = .03) domains. There were no differences in serum levels of IL-6, CRP, or cortisol between caregivers and control participants. In multivariable analysis, when family relationship was considered together with the time period of caregiving and results of the Mini-Mental State Examination test in care recipients (n = 118, 12.49 ± 7.99), only family relationship influenced scores in HADS-M depression (P = .004), SWLS scores (P = .011), and WHOQoL-BREF scores in psychological (P = .011) and social relationship (P = .008) domains. In conclusion, family caregivers are more stressed and have deeper depressive and anxiety disorders, lower life satisfaction, and lower quality of life than professional caregivers.
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.
Having 2 or more relatives involved in the informal care of people with dementia is frequent worldwide. There are, however, few comparisons of primary and secondary caregivers and even fewer of those who are caring for the same person. Our study aimed to contrast these 2 experiences of caregiving. We compared 2 related samples of 61 primary and 61 secondary family caregivers of the same persons with dementia in a nonrandomized cross-sectional study. Caregivers' main outcome assessments were the Zarit Burden Interview (for subjective burden), the General Health Questionnaire (for psychological distress), and the Positive Aspects of Caregiving scale. We controlled for caregiver variables (e.g., demographics, caregiving arrangements, social support, sense of coherence) and the neuropsychiatric symptoms of dementia. Subjective burden was higher in primary than secondary caregivers (p = .013), but positive aspects of caregiving did not differ (p = .150). Psychological distress was high at clinically relevant levels in primary and secondary caregivers, without statistically significant differences between groups (p = .456). The findings demonstrate that notwithstanding the difficulties faced by primary caregivers, secondary caregivers may also experience clinically significant distress. Therefore, their needs for assistance and support should be addressed more systematically. These findings call for systemic family-focused interventions in dementia that address the support each person provides or might provide, as well as the psychological distress each person may feel.
Background The START (STrAtegies for RelaTives) intervention reduced depressive and anxiety symptoms of family carers of relatives with dementia at home over 2 years and was cost-effective. Aims To assess the clinical effectiveness over 6 years and the impact on costs and care home admission. Method We conducted a randomised, parallel group, superiority trial recruiting from 4 November 2009 to 8 June 2011 with 6-year follow-up (trial registration: ISCTRN 70017938). A total of 260 self-identified family carers of people with dementia were randomised 2:1 to START, an eight-session manual-based coping intervention delivered by supervised psychology graduates, or to treatment as usual (TAU). The primary outcome was affective symptoms (Hospital Anxiety and Depression Scale, total score (HADS-T)). Secondary outcomes included patient and carer service costs and care home admission. Results In total, 222 (85.4%) of 173 carers randomised to START and 87 to TAU were included in the 6-year clinical efficacy analysis. Over 72 months, compared with TAU, the intervention group had improved scores on HADS-T (adjusted mean difference -2.00 points, 95% CI -3.38 to -0.63). Patient-related costs (START versus TAU, respectively: median 5759 pound v. 16 pound 964 in the final year; P = 0.07) and carer-related costs (median 377 pound v. 274 pound in the final year) were not significantly different between groups nor were group differences in time until care home (intensity ratio START:TAU was 0.88, 95% CI 0.58-1.35). Conclusions START is clinically effective and this effect lasts for 6 years without increasing costs. This is the first intervention with such a long-term clinical and possible economic benefit and has potential to make a difference to individual carers. Declarations of interest G.L., Z.W. and C.C. are supported by the UCLH National Institute for Health Research (NIHR) Biomedical Research Centre. G.L. and P.R. were in part supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) North Thames at Bart's Health NHS Trust. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. Z.W. reports during the conduct of the study; personal fees from GE Healthcare, grants from GE Healthcare, grants from Lundbeck, other from GE Healthcare, outside the submitted work.
Living with a person with dementia considerably affects the lives of both the primary caregiver and the entire family. This study aimed to synthesize the findings of qualitative studies that explored dementia caregivers' experiences, to further understand the impact of dementia caregiving on family dynamics. Thirty-seven qualitative studies were analyzed and synthesized according to the meta-synthesis methods suggested by Sandelowski and Barroso. Four themes were identified to describe the impact of dementia caregiving on the family: cracked foundation of the family caused by dementia, voluntary or involuntary setup of a marked boundary of care, family as supportive foreground versus reluctant or interfering background, and re-established relationships within and outside the family. The findings illuminate that dementia caregiving has a destructive impact on the entire family, and therefore, it is imperative to develop interventions and infrastructures for both the caregiver and the entire family of individuals with dementia.
Objectives: To investigate the resilience of caregivers of people with mild and moderate Alzheimer's disease (PwAD) and the related sociodemographic and clinical characteristics. Methods: Cross-sectional assessment of dyads of PwAD and family caregivers (N = 106). Caregivers were assessed for resilience, depression, anxiety, hopelessness, quality of life, burden and cognition. PwAD were assessed for severity of dementia, cognition, neuropsychiatric symptoms, functionality, quality of life and awareness of disease. Results: Most of the caregivers (51.1%) reported emotional problems (symptoms of anxiety, stress and depression). In both mild (p < 0.05) and moderate (p < 0.05) PwAD groups, resilience was inversely related to self-reported emotional problems. There was not a significant difference between caregivers of mild and moderate PwAD resilience (p < 0.05). Upon analyzing the factors related to resilience, we found some differences between the groups of caregivers of mild and moderate PwAD. Neuropsychiatric symptoms of PwAD (p < 0.05) and caregiver's depressive symptoms (p < 0.05) were related to resilience of caregivers of mild PwAD. In the moderate group, caregivers' higher levels of quality of life (p < 0.05) and co-residing with PwAD (p < 0.05) were related to resilience. Conclusion: Caregivers' resilience is driven by different factors according to disease severity. The findings suggest that resilience allows caregivers to manage and respond positively to stressful demands of care.
Objective: This study investigated barriers to quality end-of-life (EOL) care in the context of dementia with Lewy bodies (DLB), one of the most common degenerative dementias in the United States.; Methods: The study consisted of telephone interviews with caregivers and family members of individuals who died with DLB in the last 5 years. Interviews used a semi-structured questionnaire. Investigators employed a qualitative descriptive approach to analyze interview transcripts and identify common barriers to quality EOL care.; Results: Thirty participants completed interviews. Reported barriers to quality EOL experiences in DLB pertained to the DLB diagnosis itself and factors relating to the US health-care system, facilities, hospice, and health-care providers (physicians and staff). Commonly reported barriers included lack of recognition and knowledge of DLB, lack of education regarding what to expect, poor coordination of care and communication across health-care teams and circumstances, and difficulty accessing health-care resources including skilled nursing facility placement and hospice.; Conclusion: Many identified themes were consistent with published barriers to quality EOL care in dementia. However, DLB-specific EOL considerations included diagnostic challenges, lack of knowledge regarding DLB and resultant prescribing errors, difficulty accessing resources due to behavioral changes in DLB, and waiting to meet Medicare dementia hospice guidelines. Improving EOL experiences in DLB will require a multifaceted approach, starting with improving DLB recognition and provider knowledge. More research is needed to improve recognition of EOL in DLB and factors that drive quality EOL experiences.
Objective: To examine the relationship between care recipient (person with Alzheimer's disease) ability to perform daily tasks and caregivers' (CG) perceived burden and depression, guided by the caregiver identity theory. We also examine the mediating effect of CG abilities to meet their basic needs. Methods: This study utilizes the baseline data of the REACH II study. Spearman's rho (ρ) was used to test for relationships between burden, reported depression, and each ADLs and IADLs. To further explore the relationship between burden and each ADLs and IADLs, structural equation modeling was conducted using Mplus 8.0. Results: Reported CG total scores indicated increased perceived CG burden with greater number of assisted daily activities. CG depression scores were significantly predicted by reported burden scores and caregiver's ability to pay for basic needs. Importantly, 34.6% of variation in CG reported depressions scores were explained by reported burden scores. A multivariate regression model with reported burden scores, controlling for caregiver's ability to pay for basic needs, explained 36.6% of the variance in CG depression scores. Burden scores and CG ability to pay for basic needs significantly predicted depression scores. Results from the three models indicated that CG burden fully mediated the relationship between daily living skill scores and CG depression. Conclusion: Our study findings suggest the need to more closely examine the link between AD caregiving, financial instability, and mental health and bolster support for policies and programs that offer tangible supports and services to offset the costs of informal AD CG.
Life review (LR) therapy has received considerable support as an effective treatment for depression among older adults. Researchers believe that providing LR does not require extensive training and can be done by family members who are not psychiatric professionals. If so, then training family caregivers to provide LR is a potential strategy for alleviating the shortage of resources for treating depression among the growing population of older adults experiencing depression. A pilot study that explored the feasibility of that strategy had mixed results. Seventeen (89%) of 19 caregiver–care recipient dyads completed the current study, and caregivers provided the LR with self-reported fidelity. However, there was lack of statistically significant improvement in this convenience sample. Implications are provided for future assessments of this strategy with a larger study of caregiver and care recipient dyads.
Given the paucity of support from the welfare state, the lion's share of care for American seniors with memory loss is shouldered by their spouses who tend to be older and sometimes are frail themselves. Previous research has bifurcated attention to either accounts from diagnosed individuals or carers rather than understanding the experience within a socio-relational context of sometimes half-century long relationships. The present study was a qualitative investigation of 11 community-dwelling dyads (N = 22) living in the Greater Boston Area to understand how married heterosexual couples experience Alzheimer's. They were predominately white, highly educated individuals with mild to moderate AD and their spouses. Grounded theory methodologies were used to collect, code, and analyze all narrative study data. The data from these spousal dyads reveal that most couples approached AD as a joint challenge and were committed to maintaining their prior roles and lives for as long as possible, including shared outlooks, approaches, and activities. By showing how some couples navigate AD together rather than separately, these data provide an important counter narrative to the burden-based framing of AD in our social imagination. Regardless of perceptions of relationship closeness, all dyads employed strategies to live life positively with Alzheimer's. Despite being a highly privileged sample, or an “ideal type,” these data reveal the importance of studying AD as a coupled or family event; that is, a social and relational matter, rather than simply an individual medical problem. They also highlight the importance of relationship-centered care in meeting families “where they are” in terms of existing social roles. Universalizing all AD experiences leads to an over-reliance on reductionist tropes such as “stress” and “burden” and exacerbates the very real threat to social disenfranchisement.
Background and Objectives: Dementia is becoming increasingly prevalent and family caregivers have been providing most of the care for persons with dementia. This caregiving is a mentally and physically demanding task. "The Berlin Inventory of Caregiver Stress-Dementia" (BICS-D) is a theory driven, multidimensional assessment which was developed as part of the Longitudinal Dementia Caregiver Stress Study (LEANDER).; Research Design and Methods: The inventory consists of 25 subscales with a total of 121 items. Analyses of the psychometric properties of the inventory were based on responses from 594 caregivers.; Results: Factor analyses confirm the multidimensionality of the inventory. The reliabilities of the subscales (Cronbach's α) are between .72 and .95. Validity and sensitivity of the inventory were also confirmed. Differing patterns of burden could be demonstrated for different relatives (partners, children, and daughters-in-law) as well as for different degrees of severity of dementia.; Discussion and Implications: The scores derived for the instrument have support for reliability and validity, and sensitivity to change. It is suitable for the differential measurement of burden experienced by different subgroups of caregivers as well as for the evaluation of interventions. The different subscales of the battery can also be used separately, depending on the study's objectives.
Objectives: Providing care for family members with Alzheimer's disease (AD) might awaken ambivalent feelings in caregivers. This topic, however, has received little research attention. Having reliable and valid scales is a first step in expanding our knowledge in this area, particularly among different cultural groups, as ambivalent emotions have been found to be dependent on culture. Thus, the aims of this study were (1) to test the reliability and validity of the Caregiving Ambivalence Scale (CAS) among Israeli Jewish and Arab caregivers of individuals with AD and (2) to examine the contribution of caregivers' ethnocultural affiliation (Jewish/Arab) to the experience of ambivalent feelings. Methods: Structured face-to-face interviews were conducted with 370 family caregivers (adult children and spouses) of elderly people with AD. Approximately half of the participants (55.3%) were Israeli Jews (79.5% female; 61.3% adult children; mean age = 65.52), and the rest (44.7%) were Israeli Arabs (87.4% female; 72% adult children; mean age = 54.28). Results: Our findings indicated that the CAS has good-to-excellent internal reliability and validity both in Hebrew and Arabic. Additionally, as expected, ethnocultural affiliation (Jewish/Arab) made a unique - although modest - contribution to the explanation of ambivalence as reflected in the CAS score, with Arab caregivers reporting significantly higher levels of ambivalent feelings than did Jewish caregivers. Conclusions: The CAS is a reliable and valid structured measure to assess ambivalent feelings among Arab and Jewish caregivers of individuals with AD in Israel. Cultural context is a unique factor in understanding their mixed emotions.
In this paper, we present an ontology-based approach to analyze depression of family caregivers of Alzheimer’s disease patients. First, we developed depression ontology called OntoDepression considering the language written in social media. Four major classes and specialized subclasses are defined based on the dailyStrength, which is a well-known social media site centered on healthcare. Next, to find mental health of family caregivers of Alzheimer’s patients, their twitter data is analyzed based on the OntoDepression. Our experimental results show that negative feelings of family caregivers are not clearly revealed, while medical condition of depression symptom is highly rated. Also, their tweets mention a lot about human relationships, work and activities.
Alzheimer’s disease is the most common type of dementia, accounting for 60–80 percent of cases. The disease causes devastating impairment and often loss of cognitive and relational functioning for the individual and creates disorder and chaos for the family system. Even when not stepping into the formal role of caretaker, children of parents with Alzheimer’s disease experience increased vulnerability to physical and psychological illness, changes in family roles, and uncertainty about navigating a relationship with a parent they no longer know. In the present study, I sought to understand, through the lens of identity and identity-work, how adult children of parents with the disease perceived that their communication with and about the parent changed. Data from interviews with 12 adult children, none of whom were formal caregivers to their parents with the illness but all reported experiencing shifts in their identity and roles as a child of a parent with the disease, revealed four significant communication changes: communicating with a parent who was the same but different, communicating in multiple roles, correcting or reprimanding the parent, and managing parent’s private information. I discuss these findings, their implications, practical suggestions from the data, and suggested areas of future research.
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.
The purpose of this study is to determine family caregivers' recommendations for professional health care professionals on how to help prepare them for the death of an elder with dementia. Purposive criterion sampling was employed to identify 30 bereaved caregivers of family members aged 65 and older who died with a dementia-related diagnosis. In-depth, qualitative interviews were conducted over a 12-month period, and qualitative content analysis was used to analyze the data. Three primary themes emerged: (a) Educate Caregivers, (b) Lead Caregivers, and (c) Provide a Caring and Compassionate Presence. The results highlight the importance of various health care professionals' roles in preparing family caregivers for a death. In doing so, both the dying and their caregivers may have a better end-of-life experience with improved bereavement outcomes.
Background: The burden of caring for People with Dementia (PWD) is heavy; identifying incentives that motivate them in providing care is essential in facilitating and optimizing care. This study aims to explore and describe these motivating factors. Methods: We conducted this qualitative study between January 2016 and January 2017 in Isfahan, Iran. Data were extracted through in-depth, semi-structured interviews with 19 caregivers of PWD. These data were then examined through thematic content analysis. Results: We identified four categories of psychological motives based on the caregivers' feedback and experience. These include 1) Moral-based motives, 2) Religious, and spiritual motives; 3) Financial motives, and 4) Wicked motives. Conclusions: Our results revealed several aspects of caregivers' motives. They include moral, religious, and spiritual aspects; sharing housing accommodations, and the likelihood of inheriting a portion of the patient's assets based on unspoken rules and informal arrangements in the family, and wicked and immoral aspects. These findings can inform future efforts in enhancing the experiences of caregivers of PWD, and subsequently, the quality of care these patients receive. It further suggests that family members, members of a religious and spiritual organization, as well as social media, could play important roles in setting the stage.
A significant number of informal carers look after people who have dementia. Women's caring experiences are well documented. However, a substantially smaller amount of research exists specifically investigating the male carer perspective. This literature review explores older husbands' experiences of caring for their wives who have dementia. The findings suggest that husbands are committed to their caring role but can feel socially isolated. The caring role of older men has altered the dynamic in the marriage. Husbands continue to show commitment towards their spouses but feel that male-only support groups could offer some respite from their responsibilities. Nurses need to take time to listen to husbands' experiences, offering emotional support and signposting them to other services. Further research on the long-term effects and support needs of older male carers is needed.
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.
Background: The majority of people with dementia prefer to live independently and safely in their own home cared for by their family members. Much effort has been invested in the development of technology, such as sensor-based networks. Many challenges remain, in particular gaining more knowledge about their experiences and perceived benefits. This study aimed to explore experiences, needs and benefits with using sensor-based technology for safety and independence in the homes of people with dementia and their family members.; Methods: This study is part of the TECH@HOME project, aiming to evaluate the effects of sensor-based technology on independence among people with dementia and caregiver stress among their family members. This study applied an inductive, qualitative approach with semi-structured interviews of people with dementia (n = 9) and family members (n = 21). The participants were interviewed between June and September 2018 after using the technology for at least 6 months. The interviews were analysed with manifest content analysis.; Results: Our findings highlighted that technology was considered as a precaution and a safety measure that could provide a sense of having control of the everyday life of the person with dementia. Understanding and acceptance of the technology were as important, together with the reliability of the technology. Ethical dilemmas related to the monitoring of the person with dementia in the home were also raised.; Conclusion: This study provides insights into how people with dementia and family members experience and benefit from using sensor-based technology in their own homes. The knowledge generated is essential for healthcare professionals and policymakers developing and implementing care and service systems including technology, as well as for the industry.
Objective: Understanding which characteristics of persons with dementia (PWD) and their caregivers are associated with unmet needs can inform strategies to address those needs. Our purpose was to determine the percentage of PWD having unmet needs and significant correlates of unmet needs in PWD. Design: Cross-sectional data were analyzed using bivariate and hierarchical multiple linear regression analyses. Setting: Participants lived in the greater Baltimore, Maryland and Washington DC suburban area. Participants: A sample of 646 community-living PWD and their informal caregivers participated in an in-home assessment of dementia-related needs. Measurements: Unmet needs were identified using the Johns Hopkins Dementia Care Needs Assessment. Correlates of unmet needs were determined using demographic, socioeconomic, clinical, functional and quality of life characteristics of the PWD and their caregivers. Results: PWD had a mean of 10.6 (±4.8) unmet needs out of 43 items (24.8%). Unmet needs were most common in Home/Personal Safety (97.4%), General Health Care (83.1%), and Daily Activities (73.2%) domains. Higher unmet needs were significantly related to non-white race, lower education, higher cognitive function, more neuropsychiatric symptoms, lower quality of life in PWD, and having caregivers with lower education or who spent fewer hours/week with the PWD. Conclusions: Unmet needs are common in community-living PWD, and most are non-medical. Home-based dementia care can identify and address PWD's unmet needs by focusing on care recipients and caregivers to enable PWD to remain safely at home.
Identifying the needs of dementia caregivers is critical for supporting dementia home care. This study identified a typology of expert interventions delivered to dementia caregivers during an innovative telehealth trial that used in-home video recordings to directly observe care challenges. Qualitative content analysis was used to analyze narrative notes describing interventions that were developed based on video data submitted by 33 caregiver–care recipient dyads. Two major themes emerged: education and skills for dementia care and caregiver support. Ten subthemes included education and skills related to: behavioral and psychological symptoms of dementia, disease expectations, safety, activities of daily living, medical care optimization, and medication utilization and caregiver support related to: respite, positive reinforcement, social and financial support, and self-care. Families providing in-home dementia care experience a wide range of care challenges. By using video data, dementia care experts were able to witness and evaluate challenging care situations and provide individualized feedback.
Background: The experience of grief in family caregivers as they provide care for persons with dementia is often overlooked. The Marwit-Meuser-Caregiver-Grief-Inventory (MM-CGI) is one among the few scales that capture such experiences. In a recent study, MM-CGI was found to contain three subscales identifying dimensions of loss in caregivers - Personal-Sacrifice Burden (PSB), Heartfelt Sadness, Longing and Worry (HSLW), and Felt Isolation (FI). We aimed to evaluate the validity and utility of these dimensions in a multiethnic Asian population.; Methods: Family caregivers(n=394) completed MM-CGI and scales assessing caregiver burden, depression and gains. Internal-consistency reliability was examined using Cronbach's α, test-retest reliability using intraclass-correlation-coefficient, and construct validity using Pearson's correlation-coefficient. The utility of the MM-CGI dimensions was evaluated by comparing caregivers with high subscale scores across dementia stages and caregiving relationship.; Results: The three dimensions of MM-CGI exhibited adequate internal-consistency, test-retest reliability, construct validity, and known-group validity. PSB correlated most strongly with caregiver burden(r=0.78); HSLW with caregiver depression(r=0.75); and FI with caregiver burden and caregiver depression(r=0.60 respectively). Caregivers with high total grief scores tended to experience most difficulty with HSLW(90.8%), followed by PSB(75.4%) and FI(46.2%). The three dimensions also increased across the dementia stages, with FI higher in mild dementia, PSB higher in moderate dementia, and HSLW higher in severe dementia. Spousal caregivers experienced most difficulty in HSLW, whereas children caregivers experienced similar levels of difficulty across the dimensions.; Conclusions: The three dimensions of MM-CGI captured distinct aspects of caregiver grief in a multiethnic Asian population and would enable more individualized assessments and interventions for caregiver grief.
Objectives: The study examined the effects of a telephone-administered psycho-education with behavioral activation intervention (TBA) for family caregivers of person's with Alzheimer's dementia to reduce levels of depressive symptoms and burden and to enhance relationship satisfaction with the care-recipient METHODS: A double-blinded randomized trial compared TBA with telephone-based psycho-education with general monitoring (TGM). Ninety-six dementia caregivers were randomized. Both conditions received four weekly psycho-education sessions led by a social worker. TBA participants then received eight bi-weekly behavioral activation practice sessions delivered by paraprofessionals. TGM participants received eight bi-weekly monitoring sessions by paraprofessionals.; Results: As compared to TGM, TBA participants reported significantly larger reductions in depressive symptoms and burden and larger improvement in relationship satisfaction. Self-efficacy for controlling upsetting thoughts was found to have a partial meditation effect between TBA and the reduction of depressive symptoms. Qualitative feedback suggested that TBA participants expressed unique gains in awareness and developing new ways of reappraising the caregiving situation.; Conclusion: TBA was an effective intervention to reduce depressive symptoms and burden as well as to enhance relationship satisfaction in dementia caregivers.; Practice Implications: The use of telephone and trained paraprofessionals can enhance the accessibility and sustainability of behavioral activation intervention for dementia family caregivers.
Background and Objectives: The number of persons living with dementia (PLWD) in the United States will reach 16 million by 2050. Behavioral and psychological symptoms of dementia challenge family caregivers and contribute to negative caregiver outcomes such as burden and depression. Available technology can support the delivery of effective interventions to families providing dementia care at home. The Supporting Family Caregivers with Technology for Dementia Home Care (FamTechCare) randomized controlled trial evaluated the effects of a telehealth intervention on caregiver outcomes.; Research Design and Methods: The FamTechCare intervention provides tailored dementia-care strategies to in-home caregivers based on video recordings caregivers submit of challenging care situations. An expert team reviews the videos and provides individualized interventions weekly for the experimental group. In the telephone-support attention control group, caregivers receive feedback from an interventionist via the telephone based on caregiver retrospective recall of care challenges. Effects of the intervention on caregiver outcomes, including burden, depression, sleep disturbance, competence, desire to institutionalize the PLWD, and caregiver reaction to behavioral symptoms were evaluated by fitting linear mixed regression models to changes in the outcomes measured at 1 and 3 months.; Results: FamTechCare caregivers (n = 42) had greater reductions in depression (p = .012) and gains in competence (p = .033) after 3 months compared to the attention control group (n = 41). Living in rural areas was associated with a reduction in depression for FamTechCare caregivers (p = .002). Higher level of education was associated with greater improvements or lesser declines in burden, competence, and reaction to behavioral symptoms for both the FamTechCare and attention control caregivers.; Discussion and Implications: This research demonstrated benefits of using available technology to link families to dementia care experts using video-recording technology. It provides a foundation for future research testing telehealth interventions, tailored based on rich contextual data to support families, including those in rural or remote locations.
Background and Objectives Sex and gender differences among dementia spousal caregivers have been investigated, but never systematically reviewed or synthesized. A synthesis of findings can help facilitate specificity in practice and in health policy development. As a first step towards such a synthesis, this scoping review reports the available evidence, identifies research gaps, and suggests possible directions for future research. Research Design and Methods A scoping review methodology was used to identify articles, and to chart and analyze data. Systematic searches for published, empirical studies, with an explicit goal or hypothesis related to sex or gender differences were conducted in seven databases. Results Sixty-one studies met inclusion criteria. Most (n = 45) were quantitative, cross-sectional studies. Caregivers included in the studies were generally 61–70 years old, Caucasian, middle-class, and highly educated. The most extensively investigated differences are: depression, burden, objective physical health, and informal supports. Discussion and Implications This scoping review is the first to summarize and critique the research on sex and gender differences that are specific to dementia spousal caregivers. The review can be used by researchers to make decisions regarding future systematic reviews and primary studies. To further strengthen the evidence base, future studies may benefit from including more caregivers of ethnic minorities, using more qualitative, longitudinal, or experimental designs, and focusing on variables needed to inform caregiving models and theories. Overall, this scoping review contributes to furthering gender-sensitive practices and policies that are better tailored to the specific needs of this population.
Primary family caregivers of patients with dementia often experience high caregiver burden and significant decline in a range of health outcomes. The current study examined the relationship between medical comorbidities of inpatients with dementia and caregiver burden in adult–child primary caregivers, and the buffering effect of having a secondary caregiver on the relationship between patients' comorbidities and caregiver burden. The study is a secondary analysis of data from a cross‐sectional observational study design. The sample comprised 477 dyads of inpatients with dementia and adult–child primary caregivers attending the neurological department of two grade A hospitals. All the inpatients were assessed with the Charlson Comorbidity Index (CCI) and the Mini‐Mental State Examination (MMSE). All the adult–child primary caregivers were assessed with the Zarit Burden Interview (ZBI) and completed the questionnaires on socio‐demographic data, caring hours, presence of secondary caregiver, and the level of impairment of the patient. Higher burden was associated with higher scores on the CCI and having a spouse of the patient as the secondary caregiver. A significant interaction occurred between the CCI and caregiver burden when having a spouse as the secondary caregiver, indicating the negative effect of the CCI on caregiver burden was greater when the spouse of the patient served as the secondary caregiver. In summary, the negative impact of patients' comorbidities on caregiver burden in adult–child primary caregivers was heightened when the secondary caregiver role was undertaken by the spouse of the patient with dementia. These results may inform programmes targeted to improve care arrangements for people with dementia and their caregivers.
Aims: To synthesize factors that facilitates or hinders the choice of a new living environment for a person with dementia by the informal caregiver.; Background: In an effort to develop evidenced-based interventions to support caregivers, it is essential to explore their experience.; Design: A qualitative systematic review using thematic synthesis. Studies published up to July 2019 were retrieved from four electronic databases. Two independent reviewers selected studies and assessed their methodological quality.; Findings: Choosing a new living environment for a person with dementia includes two main concerns for caregivers: (1) evaluating the current living environment and caregiving arrangements; and (2) evaluating potential living environments. The key factor, that is acceptability, reflects the extent to which a change of living environment is personally and socially perceived as desirable, suitable, as well as decent for all stakeholders.; Conclusions: Future interventions must consider that caregivers' decision-making process is highly social and value-laden.
Background and Objectives Purpose in life is associated with better health and has been found to minimize caregiving stress. Greater purpose may also promote caregiving gains (i.e. rewards or uplifts from providing care), yet the implications of purpose for positive aspects of the care role are largely unknown. The present study determined how perceptions of purpose in life among persons with dementia (PWDs) and their family caregivers are linked to caregiving gains. Research Design and Methods This cross-sectional study examined 153 co-resident family caregivers drawn from the 2011 National Health and Aging Trends Study and National Study of Caregiving. Linear regressions were estimated to evaluate associations between caregivers' and PWDs' reports of their own purpose in life and caregivers' perceived caregiving gains, along with whether these associations vary by caregiver gender. Models controlled for caregivers' sociodemographic characteristics, relationship to the PWD, care tasks, role overload, negative caregiving relationship quality, and both care partners' chronic health conditions. Results Caregivers' higher purpose in life was significantly linked to greater caregiving gains. Beyond this association, PWDs' higher purpose in life was significantly associated with greater caregiving gains for women but not for men. Discussion and Implications Purpose in life is a psychological resource that contributes to positive caregiving outcomes. Interventions to improve caregiver well-being could benefit from strategies that strengthen and maintain feelings of purpose among caregivers and PWDs.
Although family satisfaction is recognized as a critical indicator of quality care for persons with serious illness, Spanish-language measures are limited. The study aims were to develop a Spanish translation of the short-form Family Satisfaction With End-of-Life Care (FAMCARE), investigate its psychometric properties in Hispanic caregivers to patients with Alzheimer's disease and related dementias (ADRD; N = 317; 209 interviewed in Spanish), and add parameters to an existing item bank. Based on factor analyses, the measure was found to be essentially unidimensional. Reliabilities from a graded item response theory model were high; the average estimate was 0.93 for the total and Spanish-language subsample. Discrimination parameters were high, and the model fit adequate. This is the first study to examine the performance of the short-form FAMCARE measure among Hispanics and caregivers to patients with ADRD. The short-form measure can be recommended for Hispanics and caregivers to patients with ADRD.
Background: Coping with behavioral changes is a daily challenge for family caregivers in all phases of dementia, and assistance is needed for it. An online self-management support intervention was therefore developed and conducted involving the following elements: (1) email contact with a specialized dementia nurse, (2) online videos, and (3) e-bulletins containing information about behavior changes and how to manage them.; Objective: The aim of this study was to understand (1) family caregivers' actual use of various elements of the online self-management support, (2) family caregivers' evaluation and satisfaction with the various elements, and (3) nurses' usage and evaluations of the online support through the tailored email contacts.; Methods: A mixed methods design was used in this process evaluation, combining quantitative and qualitative methods including analyses of dementia nurses' registration forms, the number of clicks on online videos and e-bulletins, evaluation questions answered by family caregivers in a survey questionnaire, semistructured interviews with family caregivers and nurses, and analysis of the content of the email contacts.; Results: The actual use of various elements of the online self-management support by family caregivers varied: 78% (21/27) of family caregivers had an email contact with the specialist nurse, 80% (43/54) of family caregivers clicked on an online video, and 37% (30/81) clicked on an e-bulletin. Family caregivers showed positive evaluations and satisfaction. The tailor-made approach in the personal email contacts in particular was valued by the family caregivers. Nurses' evaluations about providing self-management support online were mixed as it was a relatively new task for them.; Conclusions: An important insight is that not all participants made optimum use of the various elements of the intervention. Nurses also said that the email contacts were more often used to express feelings about coping with behavioral changes. More research is needed to investigate the reasons why people accept, adopt, and adhere to online interventions to reduce cases where they are not used and to back them up appropriately with tailored (online) information and advice for their personal situations.
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.
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.
The number of Latinos with Alzheimer's disease (AD) is projected to more than double by 2030. Yet, the current literature is lagging on Alzheimer's caregiving among Latinos. This study explores how Mexican origin women experience dementia caregiving, and the coping strategies they use to manage their caregiving situations. Nine women were identified as caregivers of a family member with AD or dementia from a larger study on caregiving. Interviews with them were collected and subsequently analyzed using a modified grounded theory approach to reduce the data to identify thematic content. All but one participant described caregiving as "tiring," "wearing," or "hard." They reported suffering from stress, insomnia, nervousness, migraines, and/or depression because of their caregiving experiences. Participants engaged in various coping strategies to help combat the perceived negative consequences of their caregiving experiences. The most commonly reported strategies were various forms of distraction, and meditation or prayer. The Mexican origin women in this study experience faced two types of interpersonal challenges related to dementia caregiving: changes in the care receiver's personality and behaviors, and physical care needs. They engaged in various coping to strategies to address the difficulties of their situation. This study provides formative research for identifying research questions and topics of examination in the future.
Background: About three-quarters of people with dementia live in their own homes, with help from family members and/or other unpaid carers, such as friends or neighbors. Often, unpaid carers themselves experience negative consequences, such as stress, burden, and symptoms of depression or anxiety. Research has shown that these consequences can be alleviated by psychosocial and psychological interventions. Moreover, there are indications that those interventions can be effective when offered online.; Objective: This paper describes the protocol of a randomized controlled trial (RCT) that will take place in the Netherlands to evaluate the effectiveness of iSupport, a minimally guided, internet-based intervention to improve carers' mental health and coping resources.; Methods: A superiority two-arm RCT comparing the effects of the online support program with a waiting list control condition will be carried out in the Netherlands. The iSupport intervention was developed by the World Health Organization and is based on cognitive behavioral therapy principles. It has five main themes divided into 23 lessons. Carers can pick and choose which lessons they want to complete. We aim to recruit 200 unpaid carers. The experimental group (n=100) will be provided with access to the intervention for 3 months following randomization; those in the waiting list control group (n=100) will be granted access to the intervention after 3 months. Assessments will be conducted at baseline (T0), 3 months after baseline (post intervention, T1), and 6 months after baseline (follow-up, T2). The primary outcome is perceived stress, measured by the Perceived Stress Scale. Secondary outcomes are symptoms of depression and anxiety, caregiver burden, sense of competence, self-efficacy, mastery, and carers' attitudes toward dementia and their person-centered approach (ie, to what extent carers tailor the provided care to the interest, needs, and history of the person with dementia).; Results: Recruitment for the trial started in January 2019. As of July 2019, we have enrolled 120 participants. Data collection is expected to be completed by March 2020. Once all the data have been collected, we will conduct the data analyses between April and May 2020. We aim to publish our results in a manuscript by June 2020.; Conclusions: Online interventions have shown promising results in improving the mental health of carers of people with dementia. Additionally, online interventions may overcome accessibility barriers. If successful, this intervention will have important potential for implementation as a public health intervention, since costs and support by trained staff are minimal.; Trial Registration: Netherlands Trial Register (NTL) NL6417; https://www.trialregister.nl/trial/6417.; International Registered Report Identifier (irrid): DERR1-10.2196/14106.; ©Ángel C Pinto-Bruno, Anne Margriet Pot, Annet Kleiboer, Rose-Marie Droes, Annemieke van Straten. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 10.10.2019.
Objective: To determine the effect of occupational therapy provided at home on activities of daily living, behavioural and psychological symptoms of dementia (BPSD) and quality of life (QOL) for people with dementia, and the effect on family carer burden, depression and QOL.; Design: Systematic review and meta-analysis.; Methods: Eight databases were searched to February 2018. Randomised controlled trials of occupational therapy delivered at home for people with dementia and their family carers that measured ADL, and/or BPSD were included. Two independent reviewers determined eligibility, risk of bias and extracted data.; Results: Fifteen trials were included (n=2063). Occupational therapy comprised multiple components (median=8 sessions). Compared with usual care or attention control occupational therapy resulted in improvements in the following outcomes for people with dementia: overall ADL after intervention (standardised means difference (SMD) 0.61, 95% CI 0.16 to 1.05); instrumental ADL alone (SMD 0.22, 95% CI 0.07 to 0.37; moderate quality); number of behavioural and psychological symptoms (SMD -0.32, 95% CI -0.57 to -0.08; moderate quality); and QOL (SMD 0.76, 95% CI 0.28 to 1.24) after the intervention and at follow-up (SMD 1.07, 95% CI 0.58 to 1.55). Carers reported less hours assisting the person with dementia (SMD -0.33, 95% CI -0.58 to -0.07); had less distress with behaviours (SMD -0.23, 95% CI -0.42 to -0.05; moderate quality) and improved QOL (SMD 0.99, 95% CI 0.66 to 1.33; moderate quality). Two studies compared occupational therapy with a comparison intervention and found no statistically significant results. GRADE ratings indicated evidence was very low to moderate quality.; Conclusions: Findings suggest that occupational therapy provided at home may improve a range of important outcomes for people with dementia and their family carers. Health professionals could consider referring them for occupational therapy.; Prospero Registration Number: CRD42011001166.
Background and Objectives: Neuropsychiatric symptoms (NPS) are a core feature of Alzheimer's disease and related dementias that are characterized by a fluctuating course. NPS are challenging to manage and contribute to high rates of burden among family caregivers. Successful information exchange between clinicians and family caregivers is critical for facilitating effective management of NPS. However, this communication is often challenging due to inconsistent terminology and classification of symptoms and limited understanding of how family caregivers recognize and describe symptoms. The objective of this study was to examine the language family caregivers' use to describe and contextualize NPS.; Research Design and Methods: Descriptive qualitative study of 20 family caregivers in a mostly urban county in the Midwestern United States using semistructured interviews. Caregiver descriptions of NPS were analyzed using directed content and text analysis to examine terminology, followed by a thematic analysis approach to examine contextualization of NPS.; Results: Caregivers employed shared terminologies to describe NPS that differed substantially from clinical terminology used to classify symptoms. Caregivers frequently engaged sense-making as a strategy to explain NPS. This sense-making served to contextualize patterns in behavior and was characterized by explanatory, situational, and strategy-oriented frameworks for understanding behavior in terms of its purpose and meaning. Caregivers' descriptions of NPS reflected broad overlap between individual NPS (i.e., agitation and care resistance) that would generally be considered clinically distinct symptoms.; Discussion and Implications: Nomenclature surrounding NPS may vary considerably between family caregivers and clinicians, and should be evaluated in partnership with people with dementia and their caregivers to ensure supportive interventions and resources are responsive to caregivers' interpretation of symptoms and sense-making.
Background and objective: Assistive technologies might be a suitable option for supporting people with dementia and their informal caregivers. To avoid "one-fits-all"-solutions and to design useful technologies, it is essential to consider the end-users' needs. The objective of this review was to examine the needs of people with dementia and their informal caregivers with regard to assistive technologies. Methods: We conducted a scoping review based on a comprehensive literature search in databases, handsearching, and free web searching. Additionally, we performed citation tracking of included studies. We included all types of study designs. Two researchers independently selected the studies. The results were thematically categorised by two researchers. Results: The search yielded 7160 references. 18 of 24 included studies were qualitative. The studies had been conducted in 13 different countries, mostly in Europe. The sample size ranged between two and 270 participants. Most of the studies involved people with dementia as well as informal caregivers. The analysis resulted in eleven themes. The themes could be assigned to three domains: "needed technologies", "characteristics of needed technologies", and "information about technologies". Conclusions: The results might guide future usage, development and research addressing end users' needs with regard to assistive technologies.
Background and Objectives People with dementia and carers do not always access respite services in a timely manner, or in some cases, at all. Although carers' perspectives on respite access have been explored, other stakeholder perspectives, especially providers and people with dementia, are underrepresented in the existing literature. The aim of this study was to synthesize multiple stakeholders' perspectives, including people with dementia, on accessing respite services in the context of dementia. Research Design and Methods Purposive maximum variation sampling was used. Semi-structured interviews were conducted with 35 key stakeholders, including people with dementia (n = 6), carers (n = 9), respite frontline staff (n = 4), respite managers (n = 8), primary care professionals (n = 3), and policy-makers/academics (n = 5). The process of consent is outlined. Data were interpreted inductively using thematic analysis. Reflexivity was considered throughout the research process. Results Three themes ("Service Acceptability," "Navigational Knowledge and Skills," "Constructing and Adjudicating Respite Need") were identified that relate to how access to respite services is negotiated between service providers and dyads. Discussion and Implications A number of the findings support previous research; however, novel findings discussed relating to the access negotiation process include (a) the ambiguous legitimacy of respite needs, in a system configured to deliver a biomedical model of care and which considers nonmedical care as a family responsibility, and (b) the constraining effects of disparate conceptualizations of "respite" between carers and providers. Future research should interrogate the appropriate boundaries of public responsibility in relation to respite service planning/delivery for dementia, with particular reference to client preferences for community and in-home provision.
Background: The Meeting Centres Support Programme (MCSP) offers a combined approach to providing practical, emotional and social support to people living with mild to moderately severe dementia and their family carers in the community. Methods: A mixed methods explanatory design was used. The evaluation took place within the framework of the international Joint Programme - Neurodegenerative Disease Research (JPND) - MEETINGDEM study in nine Meeting Centres in Italy, Poland and the United Kingdom. Eighty-seven people with dementia and 81 family carers completed a user evaluation survey after three months and 83 people with dementia and 84 carers after 6 months of participation in MCSP. Thirty-two people with dementia and 30 carers took part in focus groups after nine months. Results: The percentage of people with dementia who were very satisfied with the programme increased significantly over time (p = 0.05). The majority of carers reported that they felt less burdened after three months of participation in MCSP (48.1% much less; 35.4% a little less). After six months, this percentage increased significantly to 91% (p = 0.04, 57.7% much less; 33.3% little less). Focus group analysis showed that people with dementia and carers in all countries/centres improved their ability to maintain emotional balance. Conclusions: The MCSP is highly appreciated by people with dementia and carers in all countries and it confirms the results of previous research into MCSP in the Netherlands. Our findings indicate that MCSP is a model that can help its users to increase their capacity to deal with the challenges caused by dementia and can promote emotional balance.
Objectives: To evaluate how eight major medical comorbidities of dementia (arthritis, cancer, diabetes, heart disease, hypertension, lung disease, osteoporosis, and stroke) are associated with caregivers' perceptions of emotional caregiving difficulties and caregiving gains (ie, benefits or rewards from the care role).; Design: Nationally representative cross-sectional surveys of community-dwelling persons living with dementia (PLWDs) and their co-resident family caregivers in the United States.; Setting: The 2011 National Health and Aging Trends Study and National Study of Caregiving.; Participants: Total of 356 co-resident family caregivers of community-dwelling PLWDs.; Measurements: Caregivers' sociodemographic and health characteristics, caregiving stressors, emotional caregiving difficulties, caregiving gains, and chronic health conditions of PLWDs.; Results: Caregivers most commonly cared for a PLWD with arthritis (65.5%), followed by hypertension (64.9%), diabetes (30.1%), stroke (28.8%), osteoporosis (27.1%), heart disease (23.3%), cancer (21.5%), and lung disease (17.2%). Logistic regressions revealed that caregivers were 2.63 and 2.32 times more likely to report higher than median emotional caregiving difficulties when PLWDs had diagnoses of diabetes and osteoporosis, respectively, controlling for caregiver sex, relationship to the PLWD (spouse vs non-spouse), educational attainment, self-rated health, and assistance with activities of daily living and medical care activities. Caregivers were also 2.10 times more likely to report lower than median caregiving gains when PLWDs had a diagnosis of osteoporosis.; Conclusion: Comorbid health conditions among PLWDs have distinct implications for caregiving outcomes. Clinical care and interventions to improve the well-being of both care dyad members should support caregivers in managing medical comorbidities of dementia.
Background and Objectives: A 2008 European consensus on research outcome measures in dementia care concluded that measurement of carer quality of life (QoL) was limited. Three systematic reviews (2012, 2017, and 2018) of dementia carer outcome measures found existing instruments wanting. In 2017, recommendations were published for developing reliable measurement tools of carers' needs for research and clinical application. The aim of this study was to develop a new instrument to measure the QoL of dementia carers (family/friends).; Methods: Items were generated directly from carers following an inductive needs-led approach. Carers (n = 566) from 22 English and Welsh locations then completed the items and comparator measures at three time points. Rasch, factor, and psychometric (reliability, validity, responsiveness, and minimally important differences [MIDs]) analyses were undertaken.; Results: Following factor analysis, the pool of 70 items was refined to three independent scales: primary SIDECAR-D (direct impact of caring upon carer QOL, 18 items), secondary SIDECAR-I (indirect impact, 10 items), and SIDECAR-S (support and information, 11 items). All three scales satisfy Rasch model assumptions. SIDECAR-D, I, S psychometrics: reliability (internal ≥ .70; test-retest ≥ .85); convergent validity (as hypothesized); responsiveness (effect sizes: D: moderate; I and S: small); MIDs (D = 9/100, I = 10/100, S = 11/100).; Discussion and Implications: SIDECAR scales demonstrate robust measurement properties, meeting COSMIN quality standards for study design and psychometrics. SIDECAR provides a theoretically based needs-led QoL profile specifically for dementia carers. SIDECAR is free for use in public health, social care, and voluntary sector services, and not-for-profit organizations.
Background: The significance of advance care planning in dementia is widely acknowledged. Despite the suggestion that younger people with dementia and their family might have distinct needs and preferences in this area, studies on advance care planning in young-onset dementia are absent. Aim: We aim to explore (1) whether family caregivers had already engaged in advance care planning with patients and/ or professionals and the accompanying reasons and (2) family caregivers' preferences for how to ideally engage in the process with patients, family and professionals. Design: A qualitative study was conducted: we analysed semi-structured interviews (n = 15) through the method of constant comparative analysis. Setting/participants: We included Flemish family caregivers of persons with young-onset dementia. Results: Plans for the future typically concerned non-medical affairs. Participants' limited engagement in advance care planning was clarified through several reasons: not considering it useful, hindering patient behaviour, adopting a day-to-day attitude, caregivers emotionally protecting themselves and uncertainty about patients' cognitive competence. However, endorsement for advance care planning showed from respondents' preferences that it should be initiated timely, by a third party, and emphasize patients' remaining capacities. Finally, the need for information and high-quality care emerged. Conclusion: A gap of knowledge, of information and in care intertwiningly hinder advance care planning. In young-onset dementia, engaging in advance care planning is not an option equally accessible as not doing so. Policy makers, institutions and professionals could reflect on their responsibility in providing these patients and caregivers an actual choice to engage in advance care planning or not.
The number of older Moroccan migrants reaching the age of high risk for dementia is increasing in Belgium. Yet no study has been performed to explore how Moroccan families facing dementia experience and manage the condition. The study employed a qualitative design using semi-structured interviews with 12 informal and 13 formal caregivers to answer this research question. Findings indicate that the experience of dementia includes several invisible realities that challenge the informal and formal caregivers: (1) the invisibility of dementia as a condition; (2) the invisible subtleties of the informal care execution; (3) the invisibility and inaccessibility of care services as explanation for these family's non-use of available services; and (4) the overlooking of culture, migration and religion as invisible influencers of the overall dementia experience. A better understanding of these hidden realities of migrant older people with dementia and their caregivers could lead to interventions to provide effective and tailored person-centred care that is sensitive to the individual's life experiences, culture and religious background.
Online peer support portals are an effective way for informal caregivers to obtain support from the comfort of their homes. Having realized a dearth of research focusing on users of healthcare peer-support portals, this study focused on top contributors, termed as 'peer patrons', on one such portal. In order to understand their contribution in helping caregivers cope with their situation and to investigate any unique patterns of interaction, a qualitative thematic analysis was carried out on 1405 openly available comments on an online peer support group for informal caregivers of Alzheimer's patients. The analysis revealed five themes related to content of peer patrons' interaction with other portal members - Advice provider, information source, shoulder to cry on, portal star, and caregiver advocate. An additional theme related to the structure of the responses by peer patrons was also uncovered. In order to explain their contribution to these portals, parallels were drawn between the Stress and Coping model as applied to Dementia caregivers to show that peer patrons may be contributing towards caregivers' coping mechanisms.
Family caregiver engagement in clinical encounters can promote relationship-centered care and optimize outcomes for people with Alzheimer's disease and related dementias (ADRD). Little is known, however, about effective ways for health care providers to engage family caregivers in clinical appointments to provide the highest quality care. We describe what caregivers of people with ADRD and people with mild cognitive impairment (MCI) consider potential best practices for engaging caregivers as partners in clinical appointments. Seven online focus groups were convened. Three groups included spousal caregivers (n = 42), three included non-spousal caregivers (n = 36), and one included people with MCI (n = 15). Seven potential best practices were identified, including the following: "acknowledge caregivers' role and assess unmet needs and capacity to care" and "communicate directly with person with ADRD yet provide opportunities for caregivers to have separate interactions with providers." Participants outlined concrete steps for providers and health care systems to improve care delivery quality for people with ADRD.
This paper presents the results of a qualitative study aimed at exploring the experiences and needs of informal caregivers of persons with dementia and identifying caregiver expectations for support. The research was based on phenomenological and social constructionist approaches; it also took experience-centred and culturally oriented approaches to narratives. It was conducted in Estonia in 2017 by means of unstructured in-depth interviews with 16 informal caregivers who had relatives with dementia. The narrative approach used in this study proved to be an appropriate and valuable method to understand the situations of the caregivers of the people with dementia, in identifying their needs and expectations, and in developing social understanding for caregivers. The results are divided under four thematic headings: awareness of dementia; process of caregiving and different caregiving roles; influence of caregiving on personal life; and expectations of empowerment. We found that it is necessary to raise public awareness of dementia and develop person-centred support services for the people living with dementia.
Background: If collectivistic-oriented family carers choose professional care for dependents with dementia, they risk being stigmatised as failing their obligation. This may influence dementia care choices. Research question: How may individualistic and collectivistic values influence choices in dementia care? Method: Qualitative design with in-depth interviews with a total of 29 nurses, 13 family members in Norway and the Balkans and 3 Norwegian dementia care coordinators. A hermeneutic content-focused analysis was used. Ethical considerations: Ethical approval was obtained from the Regional Ethics Committee for Research, South-Eastern Norway, and the nursing homes' leadership. Findings: Family domain reasons why institutionalisation of dependents with dementia was seen as a last resort: obligation towards family members, particularly parents; worry about other family members' reactions and inability to cope with the care for the person with dementia. Social domain reasons: feelings of shame and stigma regarding dementia, particularly in connection with institutionalisation of family members. Discussion: Children's obligation towards their parents is an important aspect of the morality of collectivistic societies. Institutionalising parents with dementia may cause feelings of guilt and shame and worry about being stigmatised and ostracised. To avoid blame and rejection, caregiver(s) try to keep the fact that family members have dementia 'in the family'. The decision to accept professional healthcare for dependents with severe dementia or have them admitted to a geriatric institution was postponed as long as possible. Conclusion: Family care morality may constitute a significant barrier against seeking professional help for persons with dementia, a barrier based on the expectation that the family will care for their old, even when suffering from severe dementia. Hence, stigma an