The following resources examine caring for people with dementia.
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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 and shame may significantly affect the provision of care. Culturally tailored information may encourage family carers to seek professional help before the disruptive influence of the disease makes institutionalisation the only feasible option.
Background and Objectives: We aimed to explore experiences of South Asian carers of people with dementia receiving health or social care in the United Kingdom, purposively recruited to encompass a range of migration, economic and cultural experiences. While previous work in this area has reported carers' understanding of, and attitudes to dementia, we explored how carers' cultural identities and values influenced their experiences, negotiation of the caring role and relationship with services.; Research Design and Methods: We conducted semi-structured interviews with 10 Bangladeshi and Indian family carers of people living with dementia at home. We recruited participants from community settings in London and Bradford, UK. Interviews were audio recorded, transcribed and thematically analyzed.; Results: We identified 4 themes: an expectation and duty to care, expectation and duty as a barrier to accessing formal care (family carer reluctance, care recipient reluctance, and service organization), culturally (in)sensitive care, and the importance of support from informal care networks.; Discussion and Implications: Interviewees described tensions between generations with different understandings of familial care obligations. Expectations to manage led to burden and guilt, and the cost of caring, in terms of lost employment and relationships was striking. Unlike in previous studies, interviewees wanted to engage and be supported by services, but were frequently offered care models they could not accept. There was a tension between a state-provided care system obliged to provide care when there are no alternatives, and family carers who feel a duty to always provide alternatives. Informal social networks often provided valued support.
Objectives: This longitudinal study explores whether the working situation (no change in working hours despite care, reduction of working hours due to care or not working) moderates mental and physical health of informal caregivers of older people with Alzheimer's disease (AD) in Italy. Methods: Data from a sample of 146 caregivers of older people with moderate AD involved in the UP-TECH trial across three waves were analysed. Multivariate analyses were used to study the association between independent variables (caregivers' work situation) and dependent variables (caregivers' psycho-physical health). In a second model, elements relating to the caregiver, the cared-for individual and the caregiving situation were added as controls. Results: Being forced to reduce working hours due to care tasks or not being employed independently from care was negatively associated with informal caregiver's physical health, compared with working carers not experiencing reduction of working hours. In the extended model, this result was confirmed. In comparison with working carers not forced to reduce working hours, non-working carers experienced higher levels of caregiver burden and depression, however these results were not confirmed in the adjusted model. Other factors also emerged as important including weekly hours of care, the cared-for older individual's ADL/IADL scores and informal support network. Conclusions: Given the positive effect of labour force participation on health of informal caregivers of older people with AD, policy makers should promote their employment avoiding their forced reduction of working hours, while also putting measures in place to decrease the intensity of informal care provision.
Background: The number of older people living with dementia is increasing. Admiral Nurses work with these individuals and their families in the UK to manage challenges associated with the condition, providing guidance, advice and reassurance, alongside practical solutions.; Aim: To explore the input of Admiral Nurses as part of people's journey to becoming and being a carer for someone with dementia.; Design: A qualitative study was conducted to describe and understand how Admiral Nurses are experienced and encountered by carers as part of their narrative around supporting a relative with dementia.; Methods: Semi-structured interviews were conducted with 19 carers between November 2017-April 2018. They lasted between 45 and 90 min. Thematic analysis was used to interpret data.; Findings: An overarching concept of "the unity-division paradox" was derived from the data. This highlights the complex interchange between the carer with (a) the person with dementia, (b) other individuals and (c) external services. Such interactions can make carers feel part of a larger network (unity) but also as if they are on their own, fighting on behalf of the person with dementia (division). This concept was underpinned by the following themes: (a) I becomes we; (b) My private world is encroached by dementia; (c) I'm left navigating an unwieldy system; (d) Are you with or against us?; and (e) Recreating boundaries to rediscover me.; Conclusion: The identity and unique characteristics and interests of those caring for a person with dementia may be lost as they encounter tensions associated with the unity-division paradox. Admiral Nurses can help carers feel less alone in managing internal and external struggles by supporting them to do their best for a loved one with dementia.; Implications For Practice: Understanding carers' experience and supporting their work may help to increase and sustain their capacity to provide care.
Background and Objectives Caregivers need to understand their health status and the disabilities of the care recipient to engage in effective health management. Infographics tailored with personal health data are a promising approach to facilitating comprehension, particularly for individuals with low health literacy/limited English proficiency. Such approaches may be especially important for dementia caregivers given the high care burden. Research Design and Methods Guided by the Health Belief Model and the Data-Frame Theory of Sensemaking, we conducted iterative participatory design sessions with Hispanic family caregivers (N = 16) of persons with dementia. We created multiple prototype infographic designs to display scores on validated instruments of topics such as caregiving burden, overall health, and psychological distress. We retained and refined designs participants judged to be easily comprehensible. Analysis focused on identifying the graphical elements that contributed to the comprehensibility of designs and on evaluating participants' reactions to the designs. Results Successful infographics used intuitive scaling consistent with caregivers' perspective of dementia as inevitable decline. Participants reacted to infographics by describing the self-management actions they would take to address the health issue at hand. Discussion and Implications Tailored infographics supported caregivers' comprehension of their health status and served as cues to engaging in self-management. As such, they should be presented in the context of informational support that can facilitate selection of appropriate next steps. This can mitigate the potential mental and physical health consequences of caregiving and enable caregivers to continue to care for their relatives with dementia with less damage to their own well-being.
Objectives: The aim of the present study is to validate the Positive Aspects of Caregiving (PAC) scale in Greek informal family caregivers of patients with dementia, in order to assess its psychometric properties. Methods: Two hundred and forty-seven dementia caregivers completed the Greek version of the PAC (G-PAC) scale in correlation with the following psychometric tools, the Beck Depression Scale, the Zarit Burden Interview (ZBI), the Beck Anxiety Inventory (BAI), the Quality of Life-AD (QoL-AD), the Perceived Stress Scale (PSS), and the Neuropsychiatric Inventory (NPI). Caregivers were included in the study after they had been initially informed of its purpose and completed the informed consent. Results: The Principal Component Analysis (PCA) extracted two factors for the G-PAC, which is also in agreement with the original version, which is Enriching Life and Affirming Self. Concurrent validity suggested significant correlations between G-PAC and behavioral and psychological symptoms of dementia and with perceived stress. In regard to the reliability measures, the results showed that the G-PAC scale has very good internal reliability and high levels of test-retest reliability. Conclusions: The scale is a both valid and reliable tool, and therefore it can be used to assess the positive aspects of caregiving in dementia caregivers. Clinical implications: The development of positive psychology measures in dementia care can be regarded as the cornerstone of the psychotherapeutic interventions addressed to caregivers, and therefore helping them to adapt better in their caregiving role.
Background and Objectives: Numerous non-pharmacological programs for family caregivers and persons with dementia (PWDs) have been found efficacious in randomized controlled trials. Few programs have been tested in translation studies that assess feasibility and outcomes in less-controlled, real-world implementations. This translation study tested the impact of the partnership version of BRI Care Consultation, "Partners in Dementia Care (PDC)," on outcomes for PWDs and their family/friend caregivers. PDC was delivered via partnerships between the Louis Stokes Department of Veterans Affairs Medical Center and the Greater East Ohio Alzheimer's Association Chapter and the Western Reserve Area Agency on Aging. PDC is a personalized coaching program done by telephone, e-mail, and regular mail.; Research Design and Methods: For this translation study, the program was implemented in a manner that mirrored a non-research implementation. The study sample included 148 caregivers and 84 PWDs who used PDC for 12 months. Research data came from 2 structured telephone interviews, one before program implementation and a follow-up after program completion. PWDs and caregivers averaged 14 telephone contacts with Care Consultants over the 12-month study period, and 12 behavioral action steps to address problems or concerns.; Results: Repeated measures ANOVAs showed the use of PDC was related to significant improvements across several outcomes for PWDs and caregivers, with greater benefits in more difficult caregiving situations. Caregivers had decreased levels of isolation, physical health strain, unmet needs; and increased confidence in caregiving capacity, informal helpers, and support service use. PWDs had decreased embarrassment about memory problems and unmet needs; and increased informal support and community service use.; Discussion and Implications: Overall, improved outcomes for PWDs and caregivers in this translation study were similar to findings from previous randomized trials, and affirmed the value of the program when delivered as a regular service offering by health care and community service organizations.
Background and Objectives This study examined how financial strain and changes in employment status affect subjective stressors over 12 months in 184 family caregivers of individuals with dementia. Research Design and Methods Subjective stressors of role overload and role captivity, and employment status were measured at baseline, 6-, and 12-months. Self-reports on financial strain were measured at baseline only. Caregivers were categorized into 3 groups based on changes in their employment status during the study over 12 months: (a) who were never employed, (b) who experienced some sort of employment status change, either going from employment to unemployment or vice versa, and (c) who were always employed. Growth curve analyses were conducted to examine within-person changes in role overload and role captivity, and associations with employment and financial strain. Results Caregivers with greater financial strain at baseline had higher levels of role overload and increasing role captivity over time. Caregivers who experienced a caregiving transition and had low financial strain at baseline showed greater decrease in role captivity over 12 months. Although caregivers who were consistently unemployed reported lower levels of role overload, they also showed steeper increase over time than those who were consistently employed. Discussion and Implications Caregivers' perceptions of financial strain add to the long-term stress of the caregiving role. Changes in caregivers' employment status may have complex associations with their feelings of stress over time.
Aim: To examine the needs, barriers and challenges experienced by family carers of people with dementia concerning the management of their care recipients' functional disabilities, and their experiences and opinions of using mobile health (mHealth) applications in health information seeking.; Background: Functional disability is a significant problem among people with dementia and management can be challenging for family carers. Evidence suggests that mHealth applications can support knowledge needs of patients and families.; Design: A qualitative descriptive exploratory study.; Methodology: In-depth interviews were conducted with a purposive sample of family carers using a semi-structured interview guide. An inductive thematic analysis method was used. The COREQ reporting guideline was followed.; Results: Five spousal and five child carers participated in this study. Four key themes were identified: (a) Challenges faced that contribute to psychological distress and burden; (b) Essential role of support systems in dementia care; (c) Information and educational needs of family carers, and (d) Experiences and attitudes of mHealth applications as an educational and supportive resource.; Conclusion: Providing functional care is demanding, challenging and stressful, and leads to carer burden. The complexity of dementia is a barrier in the organisation of functional care and access to a support network is vital to care provision. The information needs of family carers can potentially be addressed through an mHealth application.; Relevance To Clinical Practice: This study provides important information on family carers' needs, and the barriers and challenges related to functional care for people with dementia. Findings from this study can assist nurses and other health professionals in the planning of educational and supportive programs for family carers. Furthermore, the use of mHealth applications could positively contribute to the delivery of these programs.
This paper challenges traditional definitions of work and leisure as separate concepts by suggesting that a space where individuals engage in employment (paid work) can, at the same time, be a space of respite (leisure) for employees who are also family caregivers. The research aims to better understand what caregivers perceive as ideal respite space, what that space means to them, how the space where employment takes place fits that ideal and what forces restrict caregivers' ability to engage with employment as a space of respite. The term space is used because a caregiver's presence in a particular space (inside or outside of a place) gives it meaning that is simultaneously social, political and emotional. We report on a qualitative intrinsic case study of primary caregivers who are both employed and providing care to relatives with dementia. Using a reflective iterative process, 12 participants were recruited and interviewed from two Canadian provinces in 2013/14. Using a non‐temporal view of respite facilitated the identification of employment as an important space for caregivers to experience effective respite. Although this connection has been noted by other scholars, our research goes beyond this to identify four forces that create challenges for caregivers who want to maintain engagement with employment as a space of respite. These forces are internalised socialisation, family and organisational pressures and government policy. In addition, this research is one of the first to suggest ways that caregivers resist these forces. In concluding remarks, we reflect on the limitations of the study and offer suggestions for further research aimed at elucidating the spatiality of caregiver respite and the complex and dynamic aspects of resistance.
Background: Present demographic trends show a considerable rise in elderly populations with aging disorders, such as dementia. The current article focused on the exploitation of e-learning as an informal support for caregivers of people with dementia and considered its benefits and limitations to provide proper and relevant care for this target group of people as well as maintain the quality of life of their caregivers.; Methods: The methodology of this study is based on a literature review of accessible peer-review articles from three recognized databases: Web of Science, Scopus, and PubMed. The findings of the selected studies were compared and evaluated.; Results: The findings showed that e-learning educational programs/courses helped caregivers feel more confident about dementia care, reduced their perceived stress and enhanced their feelings of empathy, understanding and concern.; Conclusions: The findings of this study reveal that the exploitation of e-learning as a support tool, especially for informal caregivers, in the management of dementia may be a promising method, but its implementation requires professional training of informal caregivers in the use of this technology. More evidence-based studies are needed on this topic.
Purpose: As an intermediate prodromal stage of dementia, mild cognitive impairment (MCI) causes functional, emotional, and social challenges for both of the person with MCI (PwMCI) and their family caregiver. However, major attention has only been placed on the PwMCI's for cognitive training. This study evaluated a more comprehensive intervention, which integrated both strength-based and empowerment approaches, to address their complex needs in a dyadic fashion.; Patients and methods: This randomized controlled trial allocated 103 MCI patient-caregiver dyads to receive a 14-week dyadic strength-based empowerment program (D-StEP-MCI, n=52) or usual care (n=51). The D-StEP-MCI program consisted of group-based session to the PwMCI, home-based dyadic sessions, and telephone follow-up, with the activities supported the care dyads to navigate their own strengths and resources for integration, together with the trained skills, to optimize role and social engagement in everyday life. Dyadic health outcomes in terms of subjective and objective cognitive function, and neuro-psychiatric symptoms of PwMCI, stress in symptom management of their family caregivers, and depression of the dyads were evaluated at baseline, after the D-StEP-MCI and at 3 months thereafter.; Results: By using general estimating equation, the D-StEP-MCI significantly improved the cognitive function, subjective memory, and mood status of the PwMCI, and the positive changes were maintained at the 3-month endpoints. It also has significantly positive effects on caregivers' stress in symptom management and level of depression.; Conclusion: Our findings showed the health benefit of combining strength-based and empowerment approach in supporting the disease adaptation of PwMCI and caregiver in a dyadic fashion. This study also supports the use of a social interaction approach to optimize the everyday engagement of the PwMCI.
Background: Continuing care of an elderly patient with Alzheimer's disease may result in psychosocial and physical disorders in family caregivers, as well as limitations to providing complete care. Objectives: The aim of the present study was to determine the effectiveness of resilience education in the mental health of family caregivers of elderly patients with Alzheimer's disease. Methods: This study followed a randomized, clinical trial design. The study population consisted of family caregivers of elderly patients with Alzheimer's disease who referred to hospitals and neurologists' offices located in the western cities of Mazandaran province, Iran. Data were collected between 2016 and 2017. Fifty-four family caregivers were recruited through convenience sampling and randomized into control and intervention groups (27 in each group). Demographic characteristics, Connor-Davidson Resilience Scale, and General Health Questionnaire were used for data collection. Resilience education was provided in eight sessions (45 min each) using PowerPoint presentations and educational pamphlets. The mental health scores were calculated using the indices including normality tests and analyzed using the independent and paired t-tests, analysis of variance (ANOVA), and Bonferroni test. Results: An independent t-test showed improvements in the mental health status of those who received the educational intervention (mean difference: 23.8±6.4; P < 0.001). The independent t-test also indicated statistically significant differences between the groups' anxiety/insomnia (8.8±2.3 versus -0.12±2.5), somatic symptoms (7.2±2.2 versus -0.9±1.03), social dysfunction (4.5±2.9 versus 0.2±1.3), and depression (3.2±2.2 versus -0.08±0.6; P < 0.001). Conclusions: Resilience education successfully improved the mental health of family caregivers. Therefore, it is suggested that healthcare providers, Alzheimer's associations, andNGOsprovide educational interventions to help promote the caregivers' mental health.
Objectives: Dementia is a major public health problem with important physical, psychosocial, emotional, and financial consequences for patients, their caregivers, and society. Since patients prefer to be managed at home, extensive research has been conducted into effectiveness of psychosocial interventions to support informal caregivers. The aim of this study was to assess the effectiveness of an in-home respite care program. Methods: In a prospective quasi-experimental study, 99 dyads who received an in-home respite care program were compared at 6 months post-baseline, with 99 matched dyads receiving standard dementia care. Additionally, the short-term effect of the program was evaluated 14 to 15 days post-intervention. The primary outcome was caregiver burden. The secondary outcomes were: desire to institutionalize the patient, caregiver quality of life, and frequency and impact of behavioral problems. Mixed model analyses were performed to evaluate the impact of the intervention. Results: After 6 months, no significant difference on caregiver burden was observed, but intervention group caregivers had a significant lower desire to institutionalize the patient compared with control group caregivers (adj.diff = -0.51; p = .02). Shortly after the program, intervention group caregivers also had a significant lower role strain (adj.diff = 0.75; p = .05), and a lower burden on social and family life (adj.diff = 0.55; p = .05) compared with baseline. Conclusions: This study was the first comparative study to investigate effectiveness of an in-home respite care program to support informal caregivers of persons with dementia. The results partly confirm earlier positive findings from explorative studies.
Background: Many relatives of close family members suffering from dementia have taken on the caregiver role. While intervention studies have revealed promising results on caregiver burden, distress, and depression, there is a lack of knowledge about how caregivers' perceived relationship with their ill family member influences the burden of care. This study examined whether a psychosocial intervention influenced this perceived relationship from the caregivers' perspective. We also explored whether the caregivers' perception of the care receiver's attitude and behavior changed over time, and whether caregiver stress and mood differed following the intervention.; Methods: The participating caregivers and care receivers were randomly assigned to a psychosocial intervention comprising education about dementia, counselling and group sessions, or to treatment as usual. The study investigated caregivers' experience of expressed emotion using the Felt Expressed Emotion Rating Scale (FEERS), a self-report questionnaire that captures caregivers' perception of criticism (CC) and emotional over-involvement (EOI) exhibited by the family members with dementia.; Results: A total of 208 dyads were enrolled in the study. There were no significant differences between the intervention and control groups in the studied variables. Caregivers' perception of CC and EOI was low but fluctuated somewhat, whereas their mood and stress level were stable during the follow-up period.; Conclusions: According to the FEERS, the intervention did not influence caregivers' perception of CC and EOI, and there was no difference between the intervention and control groups regarding caregivers' perceived relationship. Despite the increased symptoms of dementia, caregivers' level of distress and mood remained stable, and they seemed to maintain a positive perception of the quality of their relationship with the care receiver.; Trial Registration: Clinical.Trials.gov Sept. 2009, NCT01287767.
Background: Family caregivers of patients with dementia (PWD) often experience depressive symptoms and use poor coping strategies. Cognitive behavioral interventions may enhance positive appraisals of caregiving-related issues and the utilization of active coping strategies among caregivers, which may help prevent caregiver depression. However, there is a shortage of primary, community-based mental health services in China, and little research has been conducted on the effect of nurse-led mental health programs in this population.; Purpose: This study explored the effect of a nurse-led cognitive behavioral intervention on depressive symptoms and coping strategies among family caregivers of PWD in China.; Methods: This randomized controlled trial used data from a sample of 112 caregivers screened from 276 potential participants in a city in southeastern China. The sample was randomly assigned to an intervention group (n = 56) and a control group (n = 56). The intervention group received five monthly in-home, nurse-led cognitive behavioral sessions and telephone consultations after each session. The control group received five monthly, short, general conversations with nurse interventionists at the participants' homes, in the hospital, or via telephone. Depressive symptoms, coping strategies, and the demographics of caregiving dyads were collected at Time 1 (baseline), Time 2 (the end of the 5-month intervention), and Time 3 (2-month follow-up). IBM SPSS Statistics Version 19.0 was used for data analysis.; Results: Eighty-two participants (intervention group: n = 47, control group: n = 35) completed the three evaluations. No significant group differences were found in baseline characteristics between the two groups. The general linear model repeated-measures analysis of variance indicated a significant difference in depressive symptoms and active coping between groups over time, with p < .001 for the interaction between depressive symptoms and groups and p < .01 for the interaction between active coping and groups. A similar result did not occur for passive coping. The t tests further supported a significant interventional effect on participants' depressive symptoms and active coping.; Conclusions/implications For Practice: This nurse-led cognitive behavioral intervention was effective in decreasing depressive symptoms and improving active coping among study participants. The findings suggest the improvement of mental health services and social policies in China to support family caregivers of PWD.
Aim: This study aimed to develop a “family caregiver needs-assessment scale for end-of-life care for senility at home” (FADE) and examine its reliability and validity. Method: A draft item pool was developed based on a literature review, and simplified to 30 items in four domains. Next, the item pool was reviewed by four visiting nurses and four researchers and refined to 15 items. A cross-sectional study was then conducted using a self-reported questionnaire. Questionnaires were sent to 2703 visiting nurses. The survey questions included participants’ basic demographic information, the importance of each item according to a modified scale, basic demographics for cases of death by senility at home, satisfaction with each item of the modified scale in an example case, and assessment of the case using the Japanese version of the Support Team Assessment Schedule (STAS-J). Internal consistency was assessed using Cronbach’s alpha. Construct validity was confirmed using confirmatory factor analysis, and correlation between the new scale and the STAS-J was used to assess criterion-related validity. Results: In total, 461 visiting nurses provided valid responses. The exploratory and confirmatory factor analyses identified 12 items from two factors: “Needs for adaptation to senility bereavement” and “Needs for essential skills in supporting a dignified death by senility.” The final model showed appropriate index values: standardized root mean residual = 0.057, Tucker–Lewis index = 0.920, Akaike information criterion = 191.6, and Bayesian information criterion = 298.2. Cronbach’s alpha for the entire scale was 0.908, and was above 0.840 for each factor. The correlation coefficient between STAS-J and the entire scale was 0.259–0.427 (p<0.001). Conclusions: The FADE scale showed acceptable internal consistency and concurrent validity. The scale can help clarify issues and desires that present themselves at home related to adaptation to senility bereavement and essential skills in supporting a dignified death by senility. Addressing these issues and desires is expected to reduce caregivers’ anxiety and burden, and means the older adults under their care may be respected and enabled to live with dignity and peace.
Purpose: This study aimed to refine a behavioral sleep intervention program targeting patients with Alzheimer's disease and their caregivers. Methods: In this case series, key components of the sleep program were built upon previous intervention studies of patients with cognitive impairment/dementia. The intervention consisted of five weekly sessions covering sleep hygiene, sleep compression, stimulus control, daily walking/light exposure, relaxation/mindfulness, and caregiver training to manage patients' behavioral problems. The materials and structure were iteratively refined based on feedback from caregivers and sleep educators. Sleep diaries were used to evaluate sleep outcomes. Results: Five out of six enrolled dyads completed the sessions. Several revisions were made during testing: the last session was changed from telephone to in-person; some components (e.g., sleep scheduling, mindfulness) were rearranged within or across sessions; sleep educator guidelines for sleep scheduling, light exposure, and walking were revised. After the fifth dyad, no additional issues were identified by the caregiver or the sleep educator. Four patients and three caregivers had improved sleep at the last session. Conclusions: The iterative refinement process was successful in finalizing the intervention program, with evidence of sleep improvements. Formal pilot testing of the program will provide further information on feasibility and effectiveness. IMPLICATIONS FOR REHABILITATION Our dyadic behavioral sleep program can be tailored to various types of sleep problems among patients with Alzheimer's disease and their family caregivers, with the goal of improving daytime function by reducing sleep disturbances at night. Caregiver training and participation of both members of the dyad in sleep management may benefit the patients' sleep and other health outcomes, reduce caregiver stress and burden, and ultimately delay or prevent institutionalization of Alzheimer's disease patients.
Background: Supporting the caregivers of dementia patients is an important issue in the field of public health. Objective: This study established a model for predicting the depression of dementia caregivers while considering the sociodemographic and health science characteristics of South Koreans. The results of this study provided baseline data for developing and applying a caregiver management App. Methods: This study analyzed 2,592 adults (⩾ 19 years old; 1154 men and 1438 women) who were caregivers (e.g., family and caregivers) of demented elderly (⩾ 60 years old). Results: The results of developed random forest model showed that gender, subjective health status, disease or accidence experience within the past two weeks, the frequency of meeting a relative, economic activity, and monthly mean household income were the major predictors for the depression of caregivers. The prediction accuracy of the model was better than K-NN and support vector machine. Conclusions: It was proved that the developed random forest-based App for predicting and managing the depression of dementia caregivers used an algorithm that has a high predictive power. It is required to develop a customized home care system that can prevent and manage the depression of the caregiver.
Background and Objectives Family carers of people with dementia (PWD) experience high rates of depression and anxiety. However, the factors that are associated with these mental health concerns among family carers are not well understood. The purpose of this review was to identify factors that are associated with depression and anxiety in family carers of PWD. Research Design and Methods A systematic review was conducted of studies that examined depressive or anxiety symptoms among family caregivers of community-dwelling older adults with dementia. Twenty-six studies met inclusion criteria and were included in the review. Results Depressive and anxiety symptoms were related to demographic factors, dementia characteristics, carer psychological and social factors, and dyadic relationship factors. Some prominent factors were consistently associated with depressive symptoms across studies. Female carers and adult–child carers, rather than spousal carers, were more likely to experience depressive symptoms. Carers' coping strategies and activity restriction were also found to be strongly related to depressive symptoms. Severity of dementia-related problematic behaviors was related to carers' depression and anxiety symptoms. In addition, relationship type and quality were important factors associated with depressive symptoms. Discussion and Implications Several important risk factors for carer depression were highlighted in this review. However, a lack of measurement precision and a reliance on cross-sectional studies limits our understanding of exactly how depression and anxiety progress during the caregiving experience. The implications for prevention and intervention programs for depression and anxiety are discussed, as well as suggestions for future research to improve the quality of research in this area.
We conducted an anonymous internet survey with a convenience sample of family members, friends, or other caregivers (hereafter referred to as "caregivers") of PWD (2/2018-10/2018). As expected, driving and home safety concerns were nearly universal, but concern about firearms was also common: half of caregivers identified firearm safety as an issue to address and a quarter of PWD were reported to live in a home with firearms. [Extracted from the article]
We aimed to explore the coping strategies utilized by Latino caregivers of people with Alzheimer's disease or related dementia (ADRD). We conducted 16 semi-structured interviews with Latinos family caregivers. The interviews explored the caregivers' experiences utilizing coping strategies. Coping strategies were identified based on a direct content analysis of the interviews. Participants were 50 to 75 years old, majority female, and from Mexico. The most common coping strategies adopted were: rationalization, social interactions, physical activity, and leisure activities. Other strategies used included avoidance, keeping busy, self-care, and spirituality or faith. Strategies such as using social interactions and spirituality and faith may be rooted in Latino cultural values such as familismo and fatalismo. The possible origin from cultural values might make some of the coping strategies more prevalent or effective in Latinos. Effective interventions aiming to reduce stress in Latino caregivers should prioritize culturally relevant problem-focused coping strategies.
Background: Keeping people living with advanced dementia in their usual place of residence is becoming a key governmental goal but to achieve this, family carers and health care professionals must negotiate how to provide optimal care. Previously, we reported a realist analysis of the health care professional perspective. Here, we report on family carer perspectives. We aimed to understand the similarities and differences between the two perspectives, gain insights into how the interdependent roles of family carers and HCPs can be optimised, and make recommendations for policy and practice. Method: Qualitative study using a realist approach in which we used the criteria from guidance on optimal palliative care in advanced dementia to examine key contexts, mechanisms and outcomes highlighted by family carers. Results: The themes and views of family caregivers resonate with those of health care professionals. Their overlapping anxieties related to business-driven care homes, uncertainty of families when making EOL decisions and the importance of symptom management referring to contexts, mechanisms and outcomes, respectively. Contexts specific to family carers were ad hoc information about services, dementia progression and access to funding. Not all family carers identified dementia as terminal, but many recognised the importance of continuity of care and knowing the wishes of the person with dementia. New mechanisms included specific resources for improving EOL care and barriers to discussing and planning for future care. Family carers identified the importance of comfort, being present, the meeting of basic care needs and feeling the right decisions have been made as good outcomes of care. Conclusions: Family carers and health care professionals share similar concerns about the challenges to good EOL dementia care. Better understanding of the effects of dementia at the advanced stages would improve confidence in EOL care and reduce uncertainty in decision making for family carers and health care professionals.
Background and Objectives: People with dementia are critically dependent on their carers when accessing and utilizing health care. To inform health care development and delivery, we aimed to explore carers' perceptions of their role in caring for a family member with dementia and to identify carers' skills and attributes and factors impacting on care.; Research Design and Methods: We used semistructured interviews to collect data from 25 carers supporting older adults with dementia. Data were thematically analyzed and the paradigm model was used to guide theory development.; Results: "Constructing normalcy" was central to all carers did, impacted by stage of life and relationship status and driven by a holistic focus on their care-recipient's quality of life. Goals guiding care were: keeping the peace; facilitating participation, happiness and independence; and ensuring safety. Enablers included: social contact; knowledge; and quality social services. Barriers included health and legal issues; symptoms of dementia; and reduced knowledge. These goals kept the peace and reduced stress for the cared-for person, but often at the cost of unrelenting responsibility and loss of carers' original roles. Discussion and Implications: As carers are so critical to the access and uptake of health care of those with dementia, health professionals and services need to support carers in their quest to construct normalcy. Our findings provide guidance to assist in ensuring appropriate support and understanding of carers work in order to optimize dementia health care delivery.
The purpose of this article is to describe the process used to create a conceptual-theoretical-empirical structure for a proposed study of policies for home health care nursing services for informal caregivers of persons with Alzheimer disease. The process consisted of linkage of the Conceptual Model of Nursing and Health Policy with Roy's Adaptation Model to guide derivation of a middle-range theory of home health care nursing services for Alzheimer disease informal caregiving, and selection of appropriate empirical research methods.
The purpose of this study is to explore variations in family support for Latino dementia caregivers and describe the role of the family in dementia caregiver stress processes. Content analysis is utilized with themes derived inductively from 16 in-depth interviews with Latino caregivers recruited in California from 2002 to 2004. Three types of family support are described: extensive (instrumental and emotional support from family, n = 3), limited (instrumental support from one family member, n = 7), and lacking (no support from family, n = 6). Most caregivers report limited support, high risk for burnout and distress, and that dementia-related neuropsychiatric symptoms are obstacles to family unity. Caregivers with extensive support report a larger family size, adaptable family members, help outside of the family, and formalized processes for spreading caregiving duties across multiple persons. Culturally competent interventions should take into consideration diversity in Latino dementia care by (a) providing psychoeducation on problem solving and communication skills to multiple family members, particularly with respect to the nature of dementia and neuropsychiatric symptoms, and by (b) assisting caregivers in managing family tensions - including, when appropriate, employing tactics to mobilize family support.
People with young onset dementia (YOD) experience many unique challenges. Similarly, family caregivers experience changing personal, familial, and societal roles. However, YOD is under recognized and under resourced with a lack of dedicated models of care. The current study explored family members' experience of caregiving for persons with YOD to identify barriers and opportunities to accessing support. Qualitative interviews were conducted with six family caregivers, using interpretative phenomenological analysis. Findings show that caregivers experience significant uncertainty within their role, difficulty accessing timely diagnosis, and face unclear care pathways and age-related restrictions to accessing support. These findings also reflect elements of ambiguous loss and anticipatory grief: caregivers experienced sudden changes to relationships and family structure, along with the anticipation of a changed future. Optimum models of care should target timely diagnosis and clear post-diagnosis pathways and services that are flexible, relevant, and accessible. Services should offer psychosocial support for family members as they adjust to their new role as caregivers.
Background: Due to its labour migration history, Belgium is confronted with an increasingly older population of people of Moroccan background who have been diagnosed with dementia. These migrants came to the country during the labour migration wave of the nineteen-sixties and seventies to work in mines and other industries and they are now ageing. Yet little is known about how dementia care is provided to this older population.; Objectives: This study explores how dementia care is provided to these Moroccan older people with dementia, and what challenges do caregivers face in providing care.; Methods: A qualitative study including 31 informal caregivers of older Moroccan migrants with dementia and professional caregivers in the field of dementia care in several Belgian cities was conducted. After an initial focus group including 6 informal and professional caregivers, individual in-depth interviews were held with 12 informal caregivers of Moroccan decent and 13 professional caregivers. In order to be included in the study, informal caregivers had to have a recent experience in caring for an older family member with dementia. The professional caregivers had to be active in the field of dementia care (General Practitioners, nurses, psychologists,…) and have experience with older migrants with dementia.; Results: Analyses of the collected data reveal that current dementia care is a challenging, complex and dynamic search process. This process is shaped by (1) multiple factors reflecting the changing care needs of the care recipient during the course of the dementia, (2) the individual (transnational) recourses of the informal caregivers and the (3) current (lack of) accessibility of professional dementia care (driven by the absence of an accessible migration-, culture- and religion-sensitive professional care). The limited professional service-use is predominantly compensated through the search for transnational external helpers. The limited migration, cultural and religious sensitivity of current dementia care is often overlooked by professional caregivers.; Conclusion: The study provides a better understanding of the complex reality of dementia care for older migrants in which these different aspects intersect. This understanding enable health professionals and policy makers to develop a better suited care for older migrants with dementia.
Background and Objectives: The current study employs population-based data to determine the extent to which stress and coping factors are related to self-rated health and distress for informal caregivers (CGs) from the 3 largest racial/ethnic groups in the United States (non-Latino White, African American, and Mexican American).; Research Design and Methods: Data on primary, informal CGs are obtained from the 2015 National Study of Caregiving (NSOC) (n = 667) and the 2016 Hispanic Established Populations for the Epidemiologic Studies of the Elderly (H-EPESE) CG supplement (n = 287). Logistic regression models of health are presented for all CGs and specifically for dementia CGs.; Results: Caregiving intensity is related to health for non-Latino White CGs and African American dementia CGs. Support from family and friends is related to better self-rated health, but only for African American dementia CGs. While better relationship quality is related to better health for African American CGs and White dementia CGs, formal support utilization is related to worse CG health for Mexican American dementia CGs.; Discussion and Implications: Findings emphasize the importance of earlier detection and intervention with CGs at the beginning in the caregiving career, the interplay of formal and informal support, and appropriate ways to intervene with dementia CGs. Culturally tailored home- and community-based care options are needed to supplement the low levels of CG support, especially for the Mexican American population.
Background: There are an estimated 46.8 million people worldwide living with dementia in 2015, being cared for usually by family members or friends (informal caregivers). The challenges faced by informal caregivers often lead to increased levels of stress, burden and risk of care-recipient institutionalisation. Aim: The overarching aim of this study was to explore the experiences and perceptions of informal caregivers of people with dementia when interacting with the health care system, and whether the support received acted as a mediator of caregiver stress. The secondary aim was to investigate healthcare professionals' views and current practice regarding people with dementia and their interactions with informal caregivers. Method: We employed a qualitative research design, using focus groups and one face-to-face interview with a purposive sample of informal caregivers and healthcare professionals in Lincolnshire, UK. Data were collected between March and July 2015. We used the stress-process model of stress in caregivers as a theoretical framework. Results: We interviewed 18 caregivers and 17 healthcare professionals. Five themes, mapped to the stress-process in caregivers' model, captured the main challenges faced by caregivers and the type of support they wanted from health care services. Primary stressors included the challenge of diagnosing dementia; caregivers' needs and expectations of an in-depth knowledge and understanding of dementia from healthcare professionals; and need for carer education. Secondary role strain included lack of support and mismatch of communication and expectations. Caregiver involvement in monitoring care and disease was a potential mediator tool. Conclusions: Fragmentation of dementia care services, lack of training for healthcare professionals and the dearth of information for caregivers means health care services are only partially fulfilling a support role. In turn, lack of support may be intensifying caregiver stress leading to worsening in their health and well-being; thus, potentially increasing the risk of institutionalisation of their care-recipient.
Objective: Informal caregivers of people with dementia develop their own beliefs about the condition, referred to as Dementia Representations (DRs), as they try to make sense of the changes they are observing. The first aim of this study was to provide a profile of the types of DRs held by caregivers. The second aim was to examine the impact of caregivers' DRs on their well-being, satisfaction with life (SwL) and caregiving stress. Methods: Participants were 1264 informal caregivers of people in the mild-to-moderate stages of dementia from time-point 1 of the IDEAL cohort study. Measures: DRs were measured using questionnaire items covering: Identity, Cause, Control, and Timeline. Results: Almost half (49.2%) of caregivers used a diagnostic term to describe the person's condition, although 93.4% of caregivers stated they were aware of the diagnosis. Higher well-being, SwL, and lower caregiving stress were associated with the use of an identity term relating to specific symptoms of dementia, attributing the cause to ageing or not knowing the cause, and believing the condition would stay the same. Lower well-being, SwL, and higher caregiving stress were associated with believing there was little that could be done to control the effects of the condition. Conclusion: Healthcare professionals should assess and gain an understanding of caregivers' DRs in order to provide more tailored information and support.
Background and Objectives The Savvy Advanced psychoeducation program was designed for previously trained caregivers of persons living with dementia to refine their problem-solving and planning skills and enhance their sense of self-efficacy as dementia progressed for the care recipient. Implementation, feasibility, participant satisfaction, and perceived program benefits were also evaluated. Research Design and Methods A total of 100 dementia family caregivers participated in the 12-month evaluation of Savvy Advanced. A pragmatic quasi-experimental no control design was used to examine changes in caregiver self-efficacy, competence, personal gain, skill mastery, and symptoms of depression from baseline to 5 and 12 months postintervention. Implementation feasibility, and participant satisfaction and perceived program benefits, were also evaluated. Results Having previously participated in a psychoeducation intervention, caregivers were quickly engaged and interactive. Caregivers demonstrated significant improvement in competence, personal gain, self-efficacy, and symptoms of depression at 5 months postprogram. Gains were sustained for competence and personal gain at 12 months. Caregivers were highly satisfied with the program and supporting materials. Challenges to implementation included caregiver recruitment and trainer sustainability. Discussion and Implications Caregivers can benefit from episodic interventions as their situation changes and new challenges arise. Savvy Advanced is one means to address these needs. Evaluation in a randomized trial is required to establish efficacy; examination of alternative modes of delivery for caregivers unable to attend in person is warranted.
Objective: Neuropsychiatric symptoms (NPSs) are identified as important care-recipient variables in terms of the impact on carer distress. The aim of this study was to determine whether specific neuropsychiatric disturbances in people with Alzheimer disease (AD) and dementia with Lewy bodies (DLB) differentially impact carer distress. Methods: This was a cross-sectional study of people diagnosed with AD and DLB and their primary carers. The Relatives' Stress Scale (RSS) was used to assess the level of reported distress in carers, and the Neuropsychiatric Inventory (NPI) was used to assess NPSs. The effect of NPSs on carer distress was analyzed using correlation analysis and partial least squares regression. Results: This study included 159 participants diagnosed with AD (n = 97) and DLB (n = 62) and their primary carers (spouses and adult children). The majority of people diagnosed with dementia were women (64.2%), with a mean age of 75.9 years (SD, 7.4) and a mean Mini-Mental State Examination (MMSE) score of 23.5 (SD, 2.9). The main analysis identified apathy as the most important NPS contributing to carer distress. Compared with AD, the explained variance in the DLB group was higher (r2 = 37.3 vs r2 = 53.7). In addition, more NPSs were considered clinically important in the DLB group. Conclusion: The findings of this study identify apathy as the most important NPS contributing to carer distress among carers of people with AD and DLB. These findings help us identify the support needs of families dealing with dementia.
Objectives: Taking care of people with dementia (PWD) has been associated with some degree of burden. The variability of the carer's burden can be partially explained by their personal characteristics. Antonovsky's model of health defined the resistance resources (RRs) as essential mechanisms to cope with stressors, and to shape the personal sense of coherence (SOC). This study identifies the RRs related with carer's SOC, and their implications in the perception of burden in family dementia carers. Methods: A sample of 308 participants from the 'SOC & DEM study' (154 carers and 154 PWD) was recruited from two memory clinics. Carer's personal characteristics of burden, SOC, self-efficacy, coping strategies, perceived social support, and depression were evaluated using standardized instruments. PWD's degree of dependence and behaviour and psychological symptoms of dementia (BPSD) were assessed too. A path analysis was used to test the relationship between caregiver burden and SOC including the personal RRs of the carers and clinical data of PWD. Results: The path model identified SOC as a major factor related to carer's burden perception (r = -.327). Self-efficacy (r = .285), two coping strategies, 'use instrumental support' (r = -.235) and 'behavioural disengagement' (r = -.219), and social support perceived (r = .304) were the main carer's personal characteristics directly related with SOC. Caring experience (r = -.281) was the main carer factor related with burden while dependence (r = .156) and BPSD (r = .157) were the dementia factors. Conclusion: The SOC has previously related with carer's burden. The results contributed to identify relevant and modifiable personal characteristics as RRs that could reduce this burden.
Advance care planning for people with dementia has become a focus of dementia care policies in developed countries. In New Zealand, the framework for dementia care relies on the person with dementia having a level of competence to enable them to participate in the planning process. For people with dementia, it may be too late to initiate these discussions in terms of decision-making capacity. Consequently, decisions about end-of-life care for people with dementia are typically made by a family member who acts as a surrogate decision maker on behalf of the person with dementia. An exploratory qualitative study of 23 people who had been carers or provided support for a family member with dementia who had died within five years of the interview was undertaken. The overarching theme, 'ordinary everyday conversations', describes how informal conversations and discussions within the family relating to preferences at the end of life had been embedded in interactions within the families over years. Sub-themes revealed three important components enabling adherence to the prior wishes of the person with dementia through these conversations: knowing the person and belief in 'doing the right thing'; the importance of Wills and Enduring Power of Attorney; and negotiating unexpected encounters. There is potential for families to be well prepared for the time when they may need to make decisions for the person with dementia based on ordinary everyday conversation that take place within families and throughout life. This study also suggests that more innovative approaches to making a Will may provide an important vehicle for expressing advanced care wishes.
Assistive technologies (ATs) are being 'mainstreamed' within dementia care, where they are promoted as enabling people with dementia to age in place alongside delivering greater efficiencies in care. AT provision focuses upon standardised solutions, with little known about how ATs are used by people with dementia and their carers within everyday practice. This paper explores how people with dementia and carers use technologies in order to manage care. Findings are reported from qualitative semi-structured interviews with 13 people with dementia and 26 family carers. Readily available household technologies were used in conjunction with and instead of AT to address diverse needs, replicating AT functions when doing so. Successful technology use was characterised by 'bricolage' or the non-conventional use of tools or methods to address local needs. Carers drove AT use by engaging creatively with both assistive and everyday technologies, however, carers were not routinely supported in their creative engagements with technology by statutory health or social care services, making bricolage a potentially frustrating and wasteful process. Bricolage provides a useful framework to understand how technologies are used in the everyday practice of dementia care, and how technology use can be supported within care. Rather than implementing standardised AT solutions, AT services and AT design in future should focus on how technologies can support more personalised, adaptive forms of care.
Background Established in 2013 this network of volunteer family carers is a national advocacy group that presents a vital opportunity for carers to use their voice to raise awareness of issues affecting families living with dementia in Ireland. The network is facilitated by a dementia specific service provider. These carer advocates wish to present on a piece of qualitative research they have recently conducted on the topic of carer resilience at the advanced stages of caring for a loved one with dementia. Methods There are 43 family carer advocates on the network, all of whom were invited to participate in this research. The piece of qualitative research conducted by the network with its members took the form of a questionnaire. The research sought to ascertain how informed and supported carers felt as their loved ones transitioned to long term residential care and the stage thereafter. This research did not discuss the level of professional care given to their loved one but what supports and services were offered to the carer at that time and how this affected their resilience. The aspect of caring for a loved one availing of hospice care naturally emerged during the research process and this topic was also explored in relation to carer resilience. Completed questionnaires were analysed to show findings and draw conclusions. Results The research gives insight into the lived experience of carer resilience told by carer advocates. The results show that carer advocates feel ill-informed and badly supported as their loved one transitions to or resided in long term residential care. The research also showed that carers feel more informed and supported if their loved one availed of hospice care rather than long term residential care. Conclusion Carers are not properly informed or supported when their loved one transitions to or resides in long term residential care and this negatively affects their resilience.
Background People with dementia and carers do not always access respite services in a timely manner, and in some cases, they do not access respite services at all. While carers' perspectives on respite access have been explored, other stakeholder perspectives, especially those of people with dementia, are under-represented in the existing literature. The aim of this study was to synthesise multiple stakeholders' perspectives, including people with dementia, on accessing respite services. Methods Purposive sampling was employed. Semi-structured interviews were conducted with 35 key stakeholders, including people with dementia (N=6), carers (N=9), respite front-line staff (N= 4), respite managers (N=8), primary care professionals (N=3) and policy-makers/academics (N=5). Informed consent was obtained from all stakeholders who could give this. Dewing's 'process consent' method was employed in relation to people with dementia. Data were interpreted inductively using thematic analysis. We aimed to move beyond the semantic level of meaning, and to interpret patterns of meaning in the data. 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. Conclusion A number of the findings support previous research; however novel findings discussed relating to the access negotiation process include 1) the ambiguous legitimacy of respite needs, in a system configured to deliver a biomedical model of care and which considers non-medical care as a family responsibility, and 2) the constraining effects of disparate conceptualisations 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 Informal care is undoubtedly a vital to dementia care in Ireland. To date, little research has been carried out exploring the burden experienced by informal carers of people with mild to moderate dementia. The main aim of this quantitative study is to explore the burden experienced by caregivers, relative to dementia severity. The secondary aim is to identify risk factors which may be contributing to this perceived burden. Methods Fifty-two people with dementia(PwD) and their informal caregivers were recruited by convenience sampling, and data was collected as part of the 'CHESS' research trial. Data was collected during baseline assessments between April 2017 and September 2018. Dementia disease severity was measured using the Mini-Mental State Examination(MMSE), the Neuro-Psychiatric Inventory Questionnaire(NPI-Q), and the Disability Assessment for Dementia(DAD) scale. These outcome measures were then compared to levels of caregiver burden, which was measured using the Zarit-Burden Interview(ZBI). These comparisons were completed using Spearman's correlations. Socio-demographic characteristics of both the carer and PwD were then compared to caregiver burden, using Mann-Whitney and Kruskal-Wallis tests. Results The results of the study substantiate that behavioural disturbances(p=0.000) and increasing disability(p=0.022) of the PwD are associated with higher carer burden. The study also identified potential non-modifiable risk factors for increased carer burden. These include spousal relationship to the PwD(p=0.096), older caregiver age(p=0.208), female carer gender(p=0.083) and higher educational attainment of the caregiver(p=0.035). Some of these differ from factors influencing burden in other international populations. Conclusion This preliminary analysis is the first study of its kind to be carried out in Ireland. It sheds light on potential predictors and risk factors for carer burden and shows need for future research to be carried out in this area. Such research would help to clarify interventions which could minimise the prevalence of the burden experienced by informal caregivers.
Background The increase in the number of people with dementia in the coming years will be significant and could be as high as 132,000 people by 2041. There is a growing need for enhanced post diagnostic supports for patients living with dementia and their families. We identified the need for a localised educational resource for families and supportive others attending our specialist memory service Methods Staff from the Integrated Care Team, Specialist Memory Service and Primary Care were trained by the Alzheimer's Society of Ireland to deliver a 6 week 'Insights Into Dementia' carers course. Tutors and dementia advisors from the Alzheimer's Society of Ireland provided in-depth training prior to course delivery and feedback to the facilitators on a weekly basis. The course included advice and education on Dementia; Changing Relationships, Communication; Responding to changes in behaviour; Nutrition; Engaging in activities; Assisting with personal care and Safety in the home. Families gained advice regarding their self-care needs and learned how to access information and support. All services involved worked together to identify, refer and support families with dementia in the local area. The group took place in an accessible location at a time which accommodated families to attend. Each course attendee completed a questionnaire prior to and after commencing the group. Results The group has delivered education and support to 48 families to date. Feedback from participants was very positive with self-reported increase in confidence, knowledge and awareness about dementia. Waiting time to access support has significantly decreased. Every course has led to a support group who meet up on a regular basis in their community. Conclusion This novel collaboration has become a key part of the integrated care pathway we have developed to support people living with dementia and their supportive others in our catchment area. The Integrated Care approach has served to enrich the programme and allow for timely signposting to localised supports.
Background The Family Carer Decision Support (FCDS) intervention has been designed to inform family carers about end of life care options available to a person living with advanced dementia. The FCDS intervention demonstrated a statistically significant impact in reducing family carer decision uncertainty on establishing goals of care at the end of life and, improved family carer satisfaction on quality of care in a study conducted in the United Kingdom. Methods The aim of this research is to adapt the application of the FCDS for use in different countries. Funding supported through the EU Joint Programme – Neurodegenerative Disease Research (JPND) project has supported the scaling up of the FCDS transnationally in the United Kingdom; Republic of Ireland; Netherlands; Canada; Czech Republic ; and, Italy. Launched in April 2019, this presentation will report on present activities including: a) description of the FCDS intervention; b) strategy for implementing the FCDS in care homes; c) study design employed for the evaluation of the FCDS; and d) work packages and that will be deployed to achieve intended outcomes Results Expected project outcomes of this work will include a) develop guidelines to facilitate transnational use of the FCDS within care homes; (b) staff education material including web learning resources; (c) family carer informational material including web learning resources; (d) measures and tools to evaluate the uptake and outcome of the FCDS intervention; (e) establish a transnational FCDS community of practice across study care homes; (f) estimated costs of providing the FCDS intervention; (g) evidence of enhancing decision making among family members regarding resident care and satisfaction with care. Conclusion Recent research revealed that care home structures and staff play an important role in the successful implementation and adoption of innovations such as the FCDS intervention, this is further examined in this transnational study.
The number of informal caregivers for family members with Alzheimer’s Disease (AD) is rising dramatically in the United States. AD caregivers disproportionately experience numerous health problems and are often isolated with little support. An active lifestyle can help prevent and mitigate physical and psychological health concerns amongst AD caregivers. Research has demonstrated how pervasive exergames can encourage physical activity (PA) in the general population, yet little work has explored how these tools can address the significant PA barriers that AD caregivers face. To identify opportunities for design, we conducted semi-structured interviews and participatory design sessions with 14 informal caregivers of family members with AD. Our findings characterize how becoming an AD caregiver profoundly impacts one’s ability to be active, perspectives on being active, and the ways that exergames might best support this population. We discuss implications for design and how our findings challenge existing technological approaches to PA promotion.
Objective: After an extended period of caregiving, the death of a family member with dementia can provide a sense of relief to individuals because caregiving has ended and their loved one is no longer suffering. Little is known about predeath factors associated with feeling relieved after the death of a family member with dementia. This study examined 1) predeath factors associated with caregiver (CG) relief; and 2) whether CG relief is associated with postbereavement adjustment, namely complicated grief and depression symptoms. Methods: Participants were bereaved CGs aged 28-90 years old drawn from the Resources for Enhancing Alzheimer's Caregiver Health (REACH) (N = 223) and Family Caregiver Transition Support (FaCTS) (N = 89) studies. In each sample, demographics were assessed at baseline, and CG relief was assessed at the first follow-up assessment after death. Each study administered a similar bereavement battery to CGs following the death of their care recipients (CRs). Results: CGs of late-stage dementia patients (FaCTS) reported more relief compared with CGs of early-to midstage dementia patients (REACH). CGs were more likely to experience relief if they were prepared for their CR's death and if they perceived their CR's death to be a relief to the CR. A multivariate regression model showed that greater CG relief was associated with less complicated grief postbereavement. CG relief was not significantly associated with depression symptoms. Conclusion: We show prospectively that the caregiving experience impacts feelings of relief, and that feeling relieved facilitates postbereavement adjustment by lessening symptoms of complicated grief.
BACKGROUND: In Norway, changes in life expectancy have led to increased attention to older people who are ageing at home, by means of home care services, adapted technology and informal caregivers. The caring situation has become difficult for many caregivers. The use of telecare has now offered them the possibility to receive support at home. The purpose of this study was to explore how nurses provide support and care at a distance, using a web camera and a web forum in a closed telecare network for caregivers to persons suffering from stroke and dementia. METHODS: The study had an explorative design with a qualitative approach. The data sources consisted of interviews with nurses and excerpts from posts in a closed telecare network. Content analysis was used to analyse the text from the interviews and the text from the web forum. RESULTS: The main theme, "Balancing asymmetric and symmetric relationships" described nurses' relationship with caregiver. Two categories, "Balancing personal and professional qualities" and "Balancing caregivers' dependence versus independence" were identified. The first describing the tension in their dialogue, the second describing how nurses provided the caregivers with a sense of security as well as strengthening them to master their daily lives. CONCLUSIONS: The nurses provided long distance support and care for the caregivers, by using computer-meditated communication. This communication was characterized by closeness as well as empathy. To strengthen the caregivers' competence and independence, the nurses were easy accessible and provided virtual supervision and support. This study increases the knowledge about online dialogues and relationship between nurses and caregivers. It contributes to knowledge about balancing in the relationship, as well as knowledge about bridging the gap between technologies and nursing care as potential conflicting dimensions. Maintenance of ethical principles are therefore critical to be aware of.
Objectives: The quality of the relationship between people with dementia and their informal caregiver maybe an important determinant of life satisfaction and well-being for both members of the dyad. Taking a dyadic perspective, the aim of this study was to examine whether self- and partner-rated relationship quality influences life satisfaction and well-being for both people with dementia and their caregivers. Design and methods: Using data from 1283 dyads in the Improving the Experience of Dementia and Enhancing Active Life (IDEAL) cohort, we examined the impact of current relationship quality on life satisfaction and well-being in dementia caregiving dyads. Data were analysed using the Actor-Partner Interdependence Model (APIM) framework. Results: Self-rated relationship quality was associated with own life satisfaction and well-being for both people with dementia and caregivers. Partner-rated relationship quality did not influence own life satisfaction or well-being for either member of the dyad. Conclusion: This study is the first to use the APIM framework to explore the dyadic associations between relationship quality and life satisfaction and well-being in a large cohort of dementia caregiving dyads. The obtained findings suggest that the individual perception of the quality of the caregiving relationship held by each member of the caregiving dyad is an important factor for that member's life satisfaction and well-being, while the partner's perception of relationship quality is not. The findings highlight the importance of considering the individual perspective of both the person with dementia and the caregiver and enabling each to maintain positive perceptions of relationship quality.
Objectives: The capability to 'live well' in people with dementia can be influenced by many factors, including those related to the experiences of their informal caregiver. How caregivers experience their own role can affect not only their well-being but also the way they provide care and hence the experience of the person with dementia. The aim of this study is to identify the potential impact of the caregiver's perception of the caregiving experience on how people with mild to moderate dementia self-rate their QoL, well-being and satisfaction with life. Method: This study utilised time-point 1 data from 1283 informal caregiver and the 1283 people with dementia whom they provide care from the IDEAL cohort study. Multivariate modelling was used to investigate the associations between measures related to the caregiver's perception of the caregiving experience (caregiving stress, perceived social restrictions, caregiving competence, positive aspects of caregiving, and coping) and the self-ratings of QoL, satisfaction with life, and well-being by the person with dementia. Results: Lower QoL ratings by the person with dementia were associated with high caregiver stress (-1.98; 95% CI: -2.89, -1.07), high perceived social restrictions (-2.04; 95% CI: -2.94, -1.14) and low caregiving competence (-2.01; 95% CI: -2.95, -1.06). Similar associations were found for satisfaction with life and wellbeing. Positive aspects of caregiving and coping were not associated with outcomes for the person with dementia. Conclusion: The findings indicate that how the caregiver experiences caregiving can affect the person with dementia. This finding reinforces the importance of providing support to caregivers.
Objectives: The objective of this review was to identify, appraise and synthesise qualitative research that explores the experience of the disclosure of a dementia diagnosis from the perspectives of clinicians, patients and carers. Method: A systematic search of four databases, grey literature and reference lists identified 13 studies, which met the required criteria to be included in the review. All were appraised using a quality appraisal tool. Data were extracted and synthesised using a meta-ethnographic approach. Results: Five key themes were developed from an interpretation of the results: the clinician's approach; how to tell people the diagnosis is dementia; the importance of the clinician offering hope; level of understanding; and who should attend the disclosure meeting. The process can be improved through a compassionate clinician offering hope, answers to patient and carer questions, and written and/or visual information to support understanding of the diagnosis. These features could be included in guidance to clinicians. There was a large amount of variance in the quality of the studies. Future qualitative research could focus on clinician compassion, giving hope, the management of dynamics within sessions, supporting information and follow-up sessions. Conclusion: Clinical practice can be informed by a body of literature but there is much work to be done to develop evidence-based detailed guidance for improving the dementia diagnosis experience for all parties, and supporting clinicians to manage inherent tensions in this process. Further research is required on this topic to addresses the shortcomings highlighted in this review.
Objectives: This systematic review and meta-analysis assesses the effectiveness of psychological interventions that involve people with dementia or mild cognitive impairment (MCI) and their informal caregivers, and target improvements in the management of the behavioral and psychological symptoms of dementia (BPSD); quality of life; and/or burden reduction for people with either dementia or MCI and their informal caregivers. Methods: Studies were identified through database searches (Cochrane Library, CENTRAL, CINAHL, EMBASE, MEDLINE and PsychINFO) and clinical trials registers (ClinicalTrials.gov and ). Data were pooled for meta-analysis. Results: Database and reference list searches identified 1,878 references, of which fourteen studies were included. Positive effects were found on the anxiety symptoms of people with dementia on the RAID scale; on the quality of life of people with dementia on the self-rated QoL-AD scale; and on informal caregiver burden on the Zarit Burden Interview. Conclusions: Psychological interventions involving whole dyads have some promise for both people with dementia and informal caregivers, but are still far from uniformly effective across BPSD, quality of life, and caregiver burden. Further research directions are discussed.
Objectives Few studies have captured the experiences of family carers who manage the nutritional needs of family members living with dementia at home. The identification and management of symptoms that may affect nutritional status is often reliant upon the family carer. This interpretative phenomenological study aimed to explore the experiences and perceptions of the nutritional care of people living with dementia at home from the perspectives of the family members who support them. Method Semi-structured interviews were conducted between October 2017 and February 2018. Participants were also asked to keep a diary of experiences for two weeks before the interview. An Interpretative Phenomenological Analysis approach was used throughout. Findings: Eight participants, with a mean age of 69.6 years residing in South West England were recruited and represented a range of familial roles. Following analysis, three superordinate themes were identified: 'becoming carer and cook', 'changing role and relationships' and 'emotional eating'. Conclusion Family carers make food and drink decisions daily, and feel a duty to take on the responsibility for food shopping and cooking. They are conscious about 'doing the right thing' when it comes to providing nutritional care, and some feel uncertain about the food choices they are making, particularly regarding a reliance on convenience foods. Changes in appetite, food preferences and mealtime habits related to dementia can lead to disruption affecting the dyad. It is important that family carers and people living at home with dementia are provided with adequate support regarding identifying nutritional risks, making appropriate food and drink choices and preventing the risk of malnutrition in the dyad.
Objectives: Being a family caregiver, and in particular giving care to someone with dementia, impacts mental and physical health and potentially reduces the ability of caregivers to "live well." This paper examines whether three key psychological resources-self-efficacy, optimism, and self-esteem-are associated with better outcomes for caregivers of people with dementia. Design and Participants: Caregivers of 1,283 people with mild-to-moderate dementia in the Improving the Experience of Dementia and Enhancing Active Life (IDEAL) project responded to measures of self-efficacy, optimism, and self-esteem, and "living well" (quality of life, life satisfaction, and well-being). Multivariate linear regression was used to examine the association between psychological resources and "living well". Results: Self-efficacy, optimism, and self-esteem were all independently associated with better capability to "live well" for caregivers. This association persisted when accounting for a number of potential confounding variables (age group, sex, and hours of caregiving per day). Conclusions: Low self-efficacy, optimism, and self-esteem might present a risk of poor outcomes for caregivers of people with dementia. These findings encourage us to consider how new or established interventions might increase the psychological resilience of caregivers.
Introduction Despite increasing numbers of persons living with Alzheimer's disease and Alzheimer's-related dementias (AD/ADRD) in Asia, particularly in low-income countries (LIC) and middle-income countries (MIC), surprisingly little is known about the current state of the evidence for family caregiver interventions. The objectives of this scoping review were to: (1) describe the evidence for efficacy of family dementia-caregiver psychosocial interventions in Asian countries, (2) compare evidence across LIC, MIC, and high-income countries (HIC), and (3) characterise cultural adaptions to interventions developed outside Asia. Methods The inclusion criteria included: (1) conducted in Asia (2) included an intervention delivered to a family caregiver of a person living with AD/ADRD, (3) reported quantitative outcomes for the family caregiver and (4) published in a peer-reviewed journal with full text available in English. Results Thirty intervention trials were identified meeting inclusion criteria and all reported statistically significant (p<0.05) improvement in one or more caregiver outcomes. Interventions usually included multiple components. The most frequently reported outcomes (ie, by ≥20% of studies) were caregiver depression, burden, quality of life and self-efficacy. Overall, 26 (87%) of the studies were conducted in HIC in Asia, primarily in Hong Kong SAR-China and Taiwan, and only 4 (13%) in LIC and MIC in Asia. Seven studies (23%) used interventions developed in USA and several described cultural adaptations. Conclusion This scoping review found substantial evidence, particularly from high-income Asian countries, that a wide range of interventions improve AD/ADRD family caregiver outcomes. However, critical knowledge gaps exist, particularly for LIC and MIC in Asia, where the number of persons with dementia is numerically largest and projected to increase dramatically in coming decades. The field could also benefit from more detailed descriptions of the process and types of cultural adaptations to interventions.
Background: Dementia disease is a chronic condition that leads a person with dementia (PwD) into a state of progressive deterioration and a greater dependence in performing their activities of daily living (ADL). It is believed nowadays that PwDs and their informal caregivers can have a better life when provided with the appropriate services and support. Connected Health (CH) is a new technology-enabled model of chronic care delivery where the stakeholders are connected through a health portal, ensuring continuity and efficient flow of information. CH has demonstrated promising results regarding supporting informal home care and Aging in Place, and it has been increasingly considered by researchers and health care providers as a method for dementia home care management. Objective: This study aims to describe the development and implementation protocol of a CH platform system to support informal caregivers of PwDs at home. Methods: This is a longitudinal observational mixed methods study where quantitative and qualitative data will be combined for determining the utility of the CH platform for dementia home care. Dyads, consisting of a PwD and their informal caregiver living in the community, will be divided into 2 groups: the intervention group, which will receive the CH technology package at home, and the usual care group, which will not have any CH technology at all. Dyads will be followed up for 12 months during which they will continue with their traditional care plan, but in addition, the intervention group will receive the CH package for their use at home during 6 months (months 3 to 9 of the yearly follow-up). Further comprehensive assessments related to the caregiver's and PwD's emotional and physical well-being will be performed at the initial assessment and at 3, 6, 9, and 12 months using international and standardized validated questionnaires and semistructured individual interviews. Results: This 3-year funded study (2016-2019) is currently in its implementation phase and is expected to finish by December 2019. We believe that CH can potentially change the PwD current care model, facilitating a proactive and preventive model, utilizing self-management-based strategies, and enhancing caregivers' involvement in the management of health care at home for PwDs. Conclusions: We foresee that our CH platform will provide knowledge and promote autonomy for the caregivers, which may empower them into greater control of the care for PwDs, and with it, improve the quality of life and well-being for the person they are caring for and for themselves through a physical and cognitive decline predictive model. We also believe that facilitating information sharing between all the PwDs' care stakeholders may enable a stronger relationship between them, facilitate a more coordinated care plan, and increase the feelings of empowerment in the informal caregivers.
Objectives: A variety of health services delivered via the Internet, or “eHealth interventions,” to support caregivers of people with dementia have shown evidence of effectiveness, but only a small number are put into practice. This study aimed to investigate whether, how and why their implementation took place. Methods: This qualitative study followed up on the 12 publications included in Boots et al.'s (2014) widely cited systematic review on eHealth interventions for informal caregivers of people with dementia, in order to explore further implementation into practice. Publicly available online information, implementation readiness (ImpRess checklist scores), and survey responses were assessed. Findings: Two interventions were freely available online, two were available in a trial context, and one was exclusively available to clinical staff previously involved in the research project. The remaining seven were unavailable. All scores on the ImpRess checklist were at 50% or lower of the total, indicating that the interventions were not ready to implement at the time of the Boots et al. (2014) review, though some interventions were scored as more implementation-ready in subsequent follow-up publications. Responses to the survey were received from six out of twelve authors. Key learnings from the survey included the importance of the involvement of stakeholders at all stages of the process, as well as the flexible adaptation and commercialization of the intervention. Conclusions: In general, low levels of implementation readiness were reported and often the information necessary to assess implementation readiness was unavailable. The only two freely available interventions had long-term funding from aging foundations. Authors pointed to the involvement of financial gatekeepers in the development process and the creation of a business model early on as important facilitators to implementation. Future research should focus on the factors enabling sustainable implementation.
Introduction: The progression of dementia and the clinical situation severity can determine the intensity and the frequency of care. Informal caregivers (IC) often experience overload and motional stress by caring for a person with dementia (PWD), and this contributes to negative consequences on psychosocial health and increased risk of mortality. Objectives: The aim of this study is to describe the profile and motivations of informal caregivers of people with dementia. Methods: We developed a descriptive-exploratory study with a mixed approach. The research scenario was the Health Centre Groups (ACES) of the Northern Zone of Portugal and its respective Family Health Units (USF) and Community Care Unit (UCC). Results: From the sample studied, it was observed that ICs are predominantly female (72.2%), with ages varying between 34 and 88 years (x = 61.43; ± 11.75). The relationship with PWD is mainly a parent son relationship (46.7%) followed by the spouse (40%) with lower expression for the siblings (2.2%). The main motivations that led family members to become caregivers were categorized into four themes: i) Emotional reasons (love, affection, marriage, commitment); ii) Duty and responsibility; iii) Proximity and availability; and iv) Feeling of pain (charity). Regarding the main motivations for caregivers, we found a greater expressiveness for both the spouses (69.5%) and the sons or daughters (58.5%) for emotional reasons. Conclusions: Therefore, even if caregivers feel motivated to take care of their family member, care strategies should be developed to help the informal caregivers to minimize stress, overload, depression and anxiety arising from this task, maximizing coping strategies and empowerment. As health care responsibilities and burdens continue to be transferred to the family and other caregivers, there is an urgent need for family-friendly policies, practices and interventions.
Background: End-of-life care for older people with dementia is often sub-optimal. Understanding the experiences of the relatives involved in the care of the person with dementia may help to improve care practice. Aims: To investigate relatives' experiences with end-of-life care for people with dementia, comparing the nursing home and home setting. Methods: In-depth interviews were conducted with 32 individuals who were bereaved of someone with dementia. Thematic analysis was performed to identify main themes from the data. Findings: Experiences translated into four themes: acknowledging human dignity; being recognised as an important caregiver; (not) talking about death and dying and making decisions together. A lack of person-centered care was mainly evident in nursing homes. Relatives took on a more prominent role in the care of the older person with dementia when the relative was cared for in a home setting and this involvement in the care of the older person was something that the relatives valued. Surrogate decision-making induced similar challenges in both settings. Conclusion: It is important that healthcare professionals inform and support relatives to help them make decision about end-of-life care and preferences. Nursing homes should learn to offer the same standard of person-centred care as a home care setting, and ensure that relatives are still involved in the care of the person with dementia.
Introduction Pharmacological interventions to address behavioural and psychological symptoms of dementia (BPSD) can have undesirable side effects, therefore non-pharmacological approaches to managing symptoms may be preferable. Past studies show that music therapy can reduce BPSD, and other studies have explored how formal caregivers use music in their caring roles. However, no randomised study has examined the effects on BPSD of music interventions delivered by informal caregivers (CGs) in the home setting. Our project aims to address the need for improved informal care by training cohabiting family CGs to implement music interventions that target BPSD, and the quality of life (QoL) and well-being of people with dementia (PwD) and CGs. Methods and analysis A large international three-arm parallel-group randomised controlled trial will recruit a sample of 495 dyads from Australia, Germany, UK, Poland and Norway. Dyads will be randomised equally to standard care (SC), a home-based music programme plus SC, or a home-based reading programme plus SC for 12 weeks. The primary outcome is BPSD of PwD (measured using the Neuropsychiatric Inventory-Questionnaire). Secondary outcomes will examine relationship quality between CG and PwD, depression, resilience, competence, QoL for CG and QoL for PwD. Outcomes will be collected at baseline, at the end of the 12-week intervention and at 6 months post randomisation. Resource Utilisation in Dementia will be used to collect economic data across the life of the intervention and at 6-month follow-up. We hypothesise that the music programme plus SC will generate better results than SC alone (primary comparison) and the reading programme plus SC (secondary comparison). Ethics and dissemination Ethical approval has been obtained for all countries. Results will be presented at national and international conferences and published in scientific journals and disseminated to consumer and caregiver representatives and the community. Trial registration numbers ACTRN12618001799246p; NCT03907748
Background: Dementia is a major cause of disability and dependency in older adults worldwide. It is often accompanied by general psychological distress, such as depression and anxiety symptoms, among caregivers of people with dementia (PwD). The physical and mental health of the caregiver is a prerequisite and a promise to help PwD continue to live as long and as well as possible. Web-based interventions can provide convenient and efficient support and an education tool to potentially reduce the negative outcomes associated with providing care. Objective: The aim of this study was to examine the effect of internet-based interventions on the mental health outcomes of family caregivers of PwD and to explore which components of the Web-based interventions play an important role. Methods: A comprehensive literature search was conducted in PubMed, Excerpta Medica dataBASE, PsycINFO, Cochrane Database, and the Cumulative Index to Nursing and Allied Health Literature using relevant terms such as Web-based and caregiver as keywords, covering all studies published before June 2018. A total of 2 reviewers independently reviewed all published abstracts, according to established inclusion and exclusion criteria. We extracted information about the participants, interventions, and results and reviewed article quality in terms of the randomized trial methods, using the approach recommended by the Cochrane Handbook for Systematic Reviews of Interventions. Results: A total of 815 caregivers participated in 6 studies, with 4 of the studies using depression as an outcome. The analysis found that depression scores dropped an average of 0.23 (95% CI -0.38 to -0.07; P<.01) after Web-based interventions. In 2 studies of caregivers who were experiencing anxiety symptoms, the average score for anxiety dropped by 0.32 points (95% CI -0.50 to -0.14; P<.01). However, in terms of coping, pain, and stress, the Web-based interventions showed a poor effect. On the whole, the addition of professional psychological support on the basis of education can improve caregivers' mental health. Conclusions: Internet-based interventions were generally effective at reducing anxiety and depression in dementia caregivers, although negative results were found in some studies. As for burden and stress, further research is required.
The filial piety model of family centred care has dominated Chinese society for thousands of years. The ways in which filial piety is presented are being modified and modernised as China undergoes social transitions. The study aims to understand the meaning of filial piety for people with dementia and family caregivers. Semi-structured interviews with people with dementia (n = 10) and family caregivers (n = 14) were conducted. Data were analysed using interpretative phenomenological analysis. Three themes emerged: (a) ‘Being filial is a cultural continuity and my future investment’. (b) ‘The changed perception and ways of being filial’. (c) ‘Filial responsibility is a social and cultural convention, but not my personal choice’. This study highlights the importance of cultural values in family care decision making and in shaping filial responsibilities. It indicates that filial obligation can be maintained through social support, even though the nature of filial piety has been changed by social transitions.
Purpose: A randomized controlled trial was conducted to test the effectiveness of the Support, Health, Activities, Resources, and Education Program. This six-session psycho-educational program provides dyadic counseling for individuals in the early stages of dementia and their family caregivers. The goal is to prevent common problems in care that emerge during the course of dementia by (1) actively engaging the person with dementia in developing a balanced plan of future care with his/her caregiver, (2) increasing use of available services, (3) enhancing dyadic relationship functioning, (4) improving well-being, and (5) evoking satisfaction with components of the intervention. Design and methods: Persons with early stage dementia (n = 128) and their caregivers (n = 128) were randomly assigned either to Support, Health, Activities, Resources, and Education Program or a control condition. Intervention efficacy was evaluated for completion of a care plan, use of services, dyadic relationship functioning, participant well-being, and program satisfaction. Results: Dyads in the treatment condition were able to construct a balanced care plan and increased their use of services. Dyadic functioning improved for one dimension (decreased emotional disruptions). Compared to the control condition, satisfaction with the intervention was higher for caregivers enrolled in Support, Health, Activities, Resources, and Education Program on four of five dimensions and one dimension for persons with dementia. Implications: Support, Health, Activities, Resources, and Education Program is a promising prevention approach that takes advantage of the early stage of dementia when both members of the dyad can participate fully in making decisions about later care.
Purpose: Art interventions have demonstrated holistic benefits for persons living with dementia and their caregivers. In this article, we describe the results of a pilot photojournalism program for 10 unpaid caregivers of persons living with dementia, with respect to caregivers’ experience in the program and their psychological well-being. Design: Caregivers participated in four sessions led by a professional photojournalist who taught principles of photography. Between the sessions, caregivers took photographs that represented what caregiving meant to them using digital cameras provided in the program. During the sessions, instruction was interspersed with discussion of caregivers’ photographs. Method: Caregiver burden and depressive symptoms were measured pre- and postprogram. Qualitative exploration included sessions’ observations, viewing caregivers’ photographs, and recording caregivers’ accompanying comments. Findings: For participants with pre- and postprogram data, caregiver burden decreased significantly (p =.037). For caregivers with pre- and postprogram data, depressive symptoms decreased nonsignificantly (p =.066). Clinically meaningful reductions in caregiver burden and depressive symptoms were attained. Qualitative findings highlighted caregivers’ strong engagement with the project, the facilitator, and other participants, and reflection on multiple aspects of their experience. Conclusions: This intervention helped caregivers creatively communicate their experience and demonstrated efficacy in the improvement of caregivers’ psychological well-being.
Vietnamese American dementia caregivers are at increased risk for adverse mental health compared to the general U.S. population given their sociodemographic and immigration experiences, yet programs that address their needs are lacking. The current article describes Vietnamese American dementia caregivers' perceptions and experiences of a culturally tailored, evidence-based intervention to reduce stress and depression. A convenience sample of caregivers was recruited from the San Francisco Bay area and randomly assigned to intervention (“Our Family Journey”; OFJ) (n = 30) or control (written dementia caregiving information) (n = 30) groups. All intervention and 76.7% of control caregivers reported that the OFJ or educational materials, respectively, were very/somewhat helpful. Three or more skills were refined/learned by 96.7% of OFJ and 36.6% of control participants. Qualitative findings indicated that the intervention had positive effects on well-being and taught new caregiving skills. This first U.S. study to address the mental health needs of Vietnamese American dementia caregivers shows positive perceptions/experiences and demonstrates a model to address a significant need in the community.
In the context of assisting informal caregivers of Alzheimer Disease patients, this article presents the design and preliminary implementation of a serious game in which two agents a user-controlled caregiver and a virtual patient communicate via specifically-designed dialog acts, reflecting both pedagogically appropriate and inappropriate behaviors.
Background and Objectives This article reviews an instrument used in cross-national research with dementia family caregivers-the Revised Scale for Caregiving Self-Efficacy (RSCSE). Although the RSCSE has been translated into multiple languages, few studies have examined scale performance across samples. We examine congruence of psychometric, reliability, and validity data to inform research and practice. Methods We conducted citation searches using Scopus, Google Scholar, Web of Science, and PsycINFO. Identified dementia caregiving studies cited the original RSCSE article and described results of English and/or non-English translations of the scale. Results Peer-reviewed published studies (N = 58) of dementia family caregivers included data for Arabic, Chinese, English, French, Italian, and Spanish translations of the RSCSE; the majority (72%) reported use of non-English translations. Studies utilizing confirmatory factor analytic approaches reported findings consistent with the original development study. Internal consistency, convergent/discriminant validity, and criterion validity indices were congruent across diverse cross-national caregiving samples assessed with different translations. Data supported the RSCSE's sensitivity to change following specific psychosocial caregiving interventions. Discussion The reliability and validity of different translations of the RSCSE support continued use with cross-national samples of dementia family caregivers. Limitations of the scale point to the need for further self-efficacy measurement development within caregiving domains. Consistent with Bandura's discussion of social cognitive theory in cultural contexts, personal agency for caregiving challenges remains generalizable to cross-national populations. This review discusses the implications for cross-cultural research and practice.
Background: Dementia is a health and care priority globally. Caring for persons with dementia is a challenge and can lead to negative psychological, physiological and financial consequences for informal carers. Advances in technology have the potential to assist persons with dementia and their carers, through assistive technology devices such as electronic medication dispensers, robotic devices trackers and motion detectors. However, little is known about carers' experience and the impact of these technologies on them. This review aims to investigate the outcomes and experience of carers of persons with dementia, who live at home and use assistive technology. Methods: A systematic search in seven databases and manual searches were carried out using pre-defined inclusion and exclusion criteria to identify studies on carers of persons with dementia involving the use of assistive technology. The search identified 56 publications with quantitative, qualitative and mixed-method designs. Results: The studies reported positive and negative findings and focused on a wide variety of assistive technology devices. There were large differences in the uses of assistive technology, outcome measures used and the quality of studies. Knowledge and acceptance, competence to use and ethical issues when using assistive technology were themes that emerged from the studies. Carers generally appreciated using assistive technology and their experience of use varied. Conclusions: The intention of this systematic review is to list and classify the various types of assistive technology used by carers of persons with dementia and explores the positive and negative aspects, knowledge, acceptance and ethical issues in the use of assistive technology by carers of persons with dementia. We recommend the use of a standard and person-centred system of classifying and naming assistive technology devices and systems and for future research efforts in assistive technology to incorporate a family/carer centred model. Systematic review registration: PROSPERO - CRD42017082268.
Successful caregiver interventions accomplish two goals. One, they address the pragmatics of care provision by educating caregivers about the illness of the care recipient, associated symptoms and their progression, and available support services. Didactic training is often paired with skills training to address the needs of the care recipient, including how to assist with functional disabilities, mange problematic behaviors, and access professional support services. Two, they facilitate caregivers’ ability to cope with the emotional challenges of caregiving inherent in watching a loved one suffer and decline, with little or no ability to mitigate the conditions that lead to suffering...
Objective: This study examined different predictive factors of burden in a sample of family caregivers of patients with dementia (PWD). In particular, the influence of social support and resilience on burden was tested, considering potential mediation effects. Methods: A total of 283 primary and family caregivers in Spain were evaluated using a standardized protocol to assess sociodemographic characteristics, clinical state of PWD and specific variables of caregiving and care providers. Results: The role of caregiver of PWD was more common in women, reporting significantly higher levels of burden than men. Resilience and social support accounted for most of the variance in burden. Furthermore, social support partially mediated the relationship between resilience and burden in caregivers. Conclusions: Caregivers’ resilience and social support are protective factors against burden in caregivers of PWD. Both factors should be considered for tailored interventions aimed at reducing the health costs of burden in this population.
Potential benefits from day care attendance are reported in the literature for both people with dementia and caregivers, although the evidence-base is limited. The study aimed to explore and compare experiences of day care services for people with dementia as described by day care attendees and their caregivers in Norway and Scotland. Whereas day care receives prominence in Norway’s national dementia plan, Scotland does not highlight day care in its national dementia strategy. A qualitative cross-national comparative study was undertaken. Semi-structured interviews were conducted with 17 people with dementia and 17 caregivers in Norway, and 19 people with dementia and 15 caregivers in Scotland. Data were analyzed thematically and comparatively to explore the experiences and outcomes of the participants. Findings indicate positive outcomes from day care for both people with dementia and caregivers. Satisfaction with services related to meaningful activities, getting out of the home, strengthening social connections and careful staff facilitation to create a positive and welcoming atmosphere. There were strong similarities in the content of services and experiences reported in the two countries. Some minor differences were noted, with caregiver support being an area of notable divergence in experiences. Specialist day care for people with dementia seems to provide important support and positive outcomes for people with dementia, and respite and reassurance for their caregivers. More research is needed to further explore the effect of day care designed for people with dementia both on the attendees and their caregivers.
The relationship between the person with dementia with family caregivers is a key factor in maintaining a sense of self and personhood. Spousal caregiving in particular can create a world of shared meaning, and in the context of the presence of cognitive decline in one spouse, couple hood is essential to a full understanding of how spouses live with and respond to the impact of dementia. While much research has focused on the strengths of long-term married couples caring for a spouse with dementia, there is currently little research on how dementia impacts couples in late-life marriage. This qualitative case study focusses on two female caregivers in late-life marriages negotiating the challenges of caregiving for a spouse with dementia. Spouse 1 returned to live with her ex-husband in order to care for him through his dementia journey and they recently remarried. Spouse 2 married a close friend of the family prior to his dementia diagnosis. While participant shared perspectives include: (1) family dynamics, (2) isolation, (3) financial concerns, and (4) acceptance of their role in their spouse’s dementia journey, their long-term outlooks are divergent due to the complexity of their motives for entering in to late-life marriage.
Family carers encounter several challenges related to caring for people with dementia, and they need support in managing care recipients’ health needs. This study aims to identify, appraise and synthesise the existing evidence on the use of mHealth/smartphone applications as an educational and supportive resource for family carers of people with dementia. An integrative literature review approach was used. Seven databases were searched. The search generated 117 articles, with seven meeting the inclusion criteria. Three categories and their attendant sub-categories emerged from the literature. The categories are ‘carer support’, ‘evaluation strategies’ and ‘barriers and challenges’. mHealth applications appear to be a feasible intervention for family carers of people with dementia despite the limited available research and barriers for their development and implementation. Further research on mHealth applications with strong methodological rigour and more research on mHealth applications as an educational and supportive resource for carers of people with dementia are needed.
Objective: To investigate the decision-making processes applied by people with dementia and family carers participating in using health economic approaches to value dementia-specific quality of life states. Methods: People with dementia (n = 13) and family carers (n = 14) participated in valuing quality of life states using two health economic approaches: Discrete Choice Experiment (DCE) and Best Worst Scaling (BWS). Participants were encouraged to explain their reasoning using a “Think Aloud” approach. Results: People with dementia and family carers adopted a range of decision-making strategies including “anchoring” the presented states against current quality of life, or simplifying the decision-making by focusing on the sub-set of attributes deemed most important. Overall, there was strong evidence of task engagement for BWS and DCE. Conclusions: Health economic valuation approaches can be successfully applied with people with dementia and family carers. These data can inform the assessment of benefits from their perspectives for incorporation within economic evaluation.
Frontotemporal dementia (FTD) is a neurodegenerative disease with symptoms that differs from other dementias. Commonly early symptoms in FTD are changes in personality and behavior, which can be interpreted as psychiatric disease. The delay in FTD diagnosis contributes to the burden of family caregivers. Therefore, it is important to have more knowledge about the pre-diagnostic stage. In this qualitative interview study, we explored fourteen family caregiver's experiences of the pre-diagnostic stage of frontotemporal dementia (FTD). Our findings suggest that the family caregivers experienced the pre-diagnostic stage of FTD as changes in the interpersonal relationship with their loved one. These changes were often subtle and difficult for family caregivers to explain to others. The findings from our study illuminate the importance of medical staff paying attention when a next of kin is concerned about subtle changes in a loved one. The findings also illuminate that awareness of FTD should be raised.
Objective: The aim of this study was to identify the potential impact of positive and negative dimensions of caregiving on caregiver well-being and satisfaction with life (SwL). Methods: This study used time-point one data from the Improving the experience of Dementia and Enhancing Active Life (also known as IDEAL)cohort study that involved 1,283 informal caregivers of people in the mild-to-moderate stages of dementia recruited from 29 sites within Great Britain. Multivariate linear regression modeling was used to investigate the associations between positive dimensions of caregiving (measured by caregiving competence and perceptions of positive aspects of caregiving), negative dimensions of caregiving (measured by caregiving stress and role captivity), and caregiver well-being and SwL. Results: Lower well-being was associated with low caregiving competence (–13.77; 95% confidence interval [CI]:–16.67, –10.87), perceiving fewer positive aspects of caregiving (–7.67; 95% CI:–10.26, –5.07), high caregiving stress (–24.45; 95% CI:–26.94, –21.96), and high role captivity (–15.61; 95% CI:–18.33, –12.89). Lower SwL was associated with low caregiving competence (–4.61; 95% CI:–5.57, –3.66), perceiving fewer positive aspects of caregiving (–3.09; 95% CI:–3.94, –2.25), high caregiving stress (–7.88; 95% CI:–8.71, –7.06), and high role captivity (–6.41; 95% CI:–7.27, –5.54). When these four measures were combined within the same model, only positive aspects of caregiving and caregiving stress retained independent associations with well-being and SwL. Conclusion: Both positive and negative dimensions of caregiving were associated with caregiver well-being and SwL. Psychological therapies and interventions need to consider not only the negative aspects of caregiving but also positive caregiving experiences and their implications for caregiver well-being and SwL.
The development of iSupport was funded by a grant from the Alzheimer Association US, the Ministry of Health, Welfare and Sport in the Netherlands, and Alzheimer Disease International. The authors alone are responsible for the views expressed in this letter and they do not necessarily represent the views, decisions or policies of the institutions with which they are affiliated. The iSupport development team included E. Albanese, N. Batsch, U. Baruah, K. Edwards, K. Egan, D. Gallagher‐Thompson, M. Guerra, J. Holroyd‐Leduc, T. Kwok, K. Mehta, M. Prins, S. Loganathan, I. Rosier, P. Shivakumar, I. van Asch, M. Varghese, H. Wang, B. Willemse, M. Wortmann and L. Xiao. The WHO Secretariat included A. Brunier, K. Carswell, T. Dua, A.M. Pot, D. Rekve, K. Seeher, M. van Ommeren, S. Saxena and D. Zandi.
Objective: To test the effects of Life Enhancing Activities for Family Caregivers (LEAF), a 6-week positive emotion regulation intervention, on outcomes of positive emotion, depression, anxiety, and physical health as measured by the Patient-Reported Outcomes Measurement Information System® (PROMIS®). Method: A randomized controlled trial (N 170) comparing LEAF (N 86) to an emotion reporting/waitlist condition (N 84) in dementia caregivers. LEAF was individually delivered online by trained facilitators. Participants in the control condition completed daily online emotion reports and then crossed over into the intervention condition after 6 weeks. The study was registered with Clinicaltrials. gov (NCT01825681) and funded by R01NR014435. Results: Analyses of difference in change from baseline to 6 weeks demonstrated significantly greater decreases in PROMIS® depression (d <.25; p.02) and Quality of Life in Neurological Disorders (NeuroQOL) anxiety (d <.33; p-.01), as well as improvements in PROMIS® physical health (d.24; p.02) in the intervention condition compared to the emotion reporting/waitlist control. The intervention also showed greater improvements in positive emotion (d.58; p-.01) and positive aspects of caregiving (d.36; p-.01). Increases in positive emotion significantly mediated the effect of LEAF on depression over time. Conclusions: This randomized controlled trial of the online-facilitated positive emotion regulation intervention in dementia caregivers demonstrated small to medium effect sizes on caregiver well-being and shows promise for remotely delivered programs to improve psychological well-being in caregivers of people with dementia and other chronic illnesses.
OBJECTIVES: The European RHAPSODY project sought to develop and test an online information and support programme for caregivers of individuals diagnosed with young onset dementia. The objectives were to assess user acceptability and satisfaction with the programme and to test outcome measures for a larger effectiveness study. DESIGN: A pilot randomised controlled trial in England, France, and Germany was conducted with 61 caregivers for adults with young onset Alzheimer's disease or frontotemporal degeneration. Evaluations at baseline, week 6, and week 12 assessed user acceptability and satisfaction. Use of the programme was measured from online back-end data. Qualitative feedback on user experiences was collected via semi-structured interviews. Measures of caregiver well-being (self-efficacy, stress, burden, frequency of patient symptoms, and caregiver reactions) were explored for use in a subsequent trial. RESULTS: Participants logged in online on average once a week over a 6-week period, consulting approximately 31% of programme content. Seventy percent of participants described the programme as useful and easy to use. Eighty-five percent expressed intent to use the resource in the future. Reductions in reported levels of stress and caregivers' negative reactions to memory symptoms were observed following use of the programme. CONCLUSIONS: Results indicated that the RHAPSODY programme was acceptable and useful to caregivers. The programme may be complementary to existing services in responding to the specific needs of families affected by young onset dementia. Distribution of the programme is underway in England, France, Germany, and Portugal.
When caring for a family member with dementia, continuous losses and predeath grief can adversely affect the caregivers’ physical and mental health. Interventions for caregivers should therefore also aim at coping with loss and managing predeath grief. It was the objective of the present study to describe sources of grief caregivers report during therapy and to investigate how therapists can support caregivers. Two caregivers who participated in a randomized controlled trial were selected for this case study. Both caregivers received an intervention based on the principles of cognitive-behavioral therapy with grief-focused content that consisted of 12 sessions within six months. Three therapy sessions per participant were transcribed, coded, and analyzed using qualitative content analysis. Results illustrate that both caregivers experienced a loss of companionship with their respective care recipient and ambiguous loss that resulted in intense grief that they found difficult to manage. Therapists responded by supporting the caregivers to acknowledge their losses and identify individual ways to cope with and accept loss and grief. Both caregivers reported higher well-being and an increased ability to manage their grief-related emotions after the therapy ended. The identified intervention strategies fit well into a theoretical framework for grief interventions for dementia caregivers, i.e. the dementia grief model.
The aim of this study was to evaluate the usage of a reminiscence app by people living with dementia and their family carers, by comparing event log data generated from app usage alongside the qualitative experience of the process. A cross-comparative analysis of electronic event logging data with qualitative interview data was conducted. Electronic event logging data were obtained for 28 participating dyads (n = 56) and the interview sample comprised 14 people living with dementia and 16 family carers (n = 30). A thematic analysis framework was used in the analysis of interview transcripts and the identification of recurrent themes. The cross-comparison of electronic event log data and qualitative data revealed 25 out of 28 dyads regularly engaged with a reminiscence app, with the analysis of usage patterns revealing four clusters classifying different levels of user engagement. The cross-comparison of data revealed that the nature of the relationship was a significant factor in ongoing user engagement. The comparative analysis of the electronic event logs as "ground truth" in combination with the qualitative lived experience can provide a deeper understanding on the usage of a reminiscence app for those living with dementia and their family carers. This work not only shows the benefits of using automated event log data mining but also shows its clear limitations without using complementary qualitative data analysis. As such, this work also provides key insights into using mixed methods for evaluating human-computer interaction technologies.
Objectives: Caregivers of persons with dementia can experience loss and grief long before the death of the person. Although the phenomenon of caregiver grief has been increasingly described, it is uncertain if caregiver grief has independent effects—separate from the well-studied construct of caregiver burden—on adverse outcomes such as caregiver depression. We sought to compare the effects of baseline grief and burden on caregiver depression at baseline and 2.5 years later. Design and Setting: A cohort study with 2.5 years of follow-up. Participants: Family caregivers of community-dwelling persons with dementia (n = 183). Measures: Participants completed questionnaires with scales that assessed caregiver grief, burden, and depression. Baseline grief and burden scores were included in a path analysis to predict depression at baseline and at 2.5 years. Results: At baseline, grief and burden had synergistic relationships with each other (P = .012), where the high levels of grief amplified the effect of burden on caregiver depression. Both grief and burden had longitudinal effects on caregiver depression at 2.5 years (P <.001 and P = .047, respectively), albeit with some differences in mechanism; both had effects which were indirectly mediated through baseline depression (P < .001 and P = .002, respectively), but only grief had a direct path toward depression at 2.5 years (P = .030), which was distinct from baseline depression. Conclusions and Implications: The findings highlight the need to identify and address caregiver grief in dementia services. They present a window of opportunity to improve caregiving outcomes, especially during the “latent phase” when caregivers encounter loss and grief but have yet to fully experience the debilitating effects of depression.
Background: People with dementia (PWDs) and their informal caregivers frequently report difficulties in maintaining their usual activities. We had previously developed a set of indicators to estimate whether dyadic, activating interventions can meet these needs for activity. This study investigates how PWDs and informal caregivers talk about the indicators in interviews for needs assessments, and how professionals identify activity needs and preferences. Our research goal was to explore the usefulness of the indicators for assessing the activity needs of community-dwelling dyads. Such assessments are needed for appropriate referral to activating interventions. Methods: A dementia case manager assessed the needs of community-dwelling PWDs and their informal caregivers; we carried out secondary analyses on the dataset resulting from the audio-tapes and transcripts. We applied qualitative, deductive content analysis because we wanted to identify both explicit and implicit needs and preferences. We used the indicators that we had developed in previous research as codes. Results: Both PWDs and informal caregivers do explicitly mention needs, preferences, and characteristics related to the indicators in the needs assessments. Possible implicit needs and preferences were frequently identified in their stories. Conclusions: Needs-driven care requires high-quality needs assessments. Both PWDs and their informal caregivers need encouragement to express their latent needs and preferences. In addition, latent needs and preferences have to be further explored in needs assessments to find out the real meaning. The outcomes of this study highlight the significance of structured needs assessments for mapping the activity needs of PWDs and their informal caregivers. Many PWDs and informal caregivers reported activity needs, which suggests that activating interventions may be appropriate. The indicators can help professionals identify activity needs so that they can discuss matching activating interventions with the dyad.
The World Alzheimer’s Report estimates that 4.1 million people in India have dementia. Caregivers of persons with dementia face physical, psychological, social and financial problems related to caring for a person with dementia. Literature on the caregiving experience however is highly specific to the sociocultural context and cannot be generalized. In low and middle income countries much of the caregiving takes place in people’s homes and is provided by family caregivers. Aim This study aims to explore the needs and challenges of family caregivers in Chennai, India. Method Focus group discussions and in-depth interviews were conducted using a topic guide. Participants were divided based on socio-economic status to ensure homogeneity. An inductive thematic approach was used to analyse and code the data. A total of 19 participants took part in the study. Results The results capture the experience of caregivers of persons with dementia in seeking help and accessing treatment. Priority caregiver needs were identified, including the need for sensitised, skilled health workers, information on dementia and advanced care needs and cost effective services. Conclusion The findings of this study strongly support the need to strengthen health systems capacity, make the health care services dementia friendly and cost effective. The influence of culture in shaping help seeking was evident in our findings. Interventions for caregivers and persons with dementia need to be developed and tested so they might be made fit for purpose and scaled up. It will be important to identify how these services can be adapted for use in low and middle income country resource setting like India.
Objectives: As a degenerative disease, the progression of dementia needs continued care provision and poses both psychological and financial burden for family caregivers of persons with dementia (PWD). This study seeks to compare predictors of care costs and caregiver burden, and to identify modifiable factors that could alleviate the burden faced by dementia caregivers. Methods: This study interviewed 231 PWD-caregiver dyads in a dementia clinic at a teaching hospital in southern Taiwan in 2013. A follow-up study was conducted a year later, and 167 dyads completed the second interview. Data collected included PWD characteristics, caregiver characteristics, relationship to PWD, and social support to caregivers. Caregiver burden was measured with the Zarit Burden Interview instrument. The association between each predictor variable and cost of care and caregiver burden scores was examined using linear mixed models. Results: Predictors of care costs were found to be different from predictors of caregiver burden: functional declines measured by Katz's activities of daily living (ADL) scale were associated with total cost as compared to behavioral disturbance measured by Neuropsychiatric Inventory (NPI), which showed no impact on care costs. However, NPI was a significant predictor of caregiver burden. Caregivers who were better-off financially also reported significantly lower caregiver burden. Conclusions: Since predictors of care costs were different from the predictors of caregiver burden, providing training to caregivers in addressing PWD's behavioral disturbance and proving financial assistance to low income caregivers could be effective in reducing caregiver burden.
This paper reports on the research methods used in five different projects aimed at supporting people living with dementia in their everyday lives and activities of daily living. In all five projects, people living with dementia and their informal carers were involved. Applied methods ranged from passive involvement in the form of observations to very active involvement consisting of consultation rounds and think-aloud sessions. The projects highlighted that people living with dementia can still contribute to the development of solutions that support them in the self-management of their symptoms and challenges, as well as technological solutions that support them in daily living.
Background: Caring for people with dementia (PWD) is stressful and poses many life challenges for the family caregivers. Interventions targeting the stress and psychological well-being of the caregivers have been proposed but the sustainable effects and efficacies of these interventions vary considerably. Mindfulness-based cognitive therapy (MBCT) has been shown to be effective at reducing stress in several populations. However, limited research on the effects of MBCT in family caregivers of PWD has been conducted. This study protocol aims to examine the effects on stress reduction of a modified MBCT for family caregivers of PWD. Methods: A prospective, single-blind, parallel-group, randomized controlled trial will be adopted. A convenience sample of 100 community-dwelling family caregivers of PWD will be randomized to either the modified MBCT or the control groups. The modified MBCT group will receive a 10-week, seven-session, group-based modified MBCT whereas the control group will receive a social interaction and routine education (SIRE) on dementia care program at a frequency and timing similar to those in the intervention group. The primary outcomes (stress) and secondary outcomes (depression, anxiety, burden, health-related quality of life, and the behavioral and psychological symptoms of the care recipient) will be measured immediately post-intervention (T1) and at 6-month follow-up (T2), which will be compared with the baseline (T0). Discussion: Reducing the stress of caregiving can promote the well-being of the family caregivers and maintain their sustainability in providing daily care for their family members with dementia. MBCT is found to be effective for stress reduction in other populations, and the results of this study are able to provide us with evidence for using MBCT as a standard supportive intervention for the family caregivers of PWD. Trial registration: ClinicalTrials.gov, NCT03354819. Registered on 28 November 2017.
Background: Caregivers of people with dementia experience high stress levels. Mindfulness-based cognitive therapy has been found to be effective in reducing stress and improving the psychological well-being of several populations. Objective: To explore the feasibility and preliminary effects of a modified mindfulness-based cognitive therapy for family caregivers of people with dementia. Methods: In a single-blinded, parallel-group, randomized controlled trial, 36 caregivers of people with dementia were randomized to either the intervention group, receiving the 7-session modified mindfulness-based cognitive therapy in 10 weeks; or the control group, receiving the usual family care and brief education on dementia care. The brief education sessions were similar in frequency and duration to the intervention group. Various psychological outcomes of caregivers were assessed and compared at baseline, immediately post-intervention, and at the 3-month follow-up. A focus group with eight participants from the intervention group was conducted to identify the strengths, limitations, and difficulties of the intervention. Results: Intervention feasibility was established with a high completion rate of 83% (completing ≥5 out of the 7 sessions) and a low attrition rate of 11.1%. The duration of the average weekly home-based mindfulness practice of the caregivers was 180 minutes (S.D. = 283.8). The intervention group experienced a statistically significant decrease in stress levels (Z = -1.98, p = 0.05, Cohen's d = 0.7) and depressive symptoms (Z = -2.25, p = 0.02, Cohen's d = 0.8) at the post-test; and a decrease in stress (Z = -2.58, p = 0.01, Cohen's d = 0.9), depressive symptoms (Z = -2.20, p = 0.03, Cohen's d = 0.7), and burden (Z = - 2.74, p = 0.006, Cohen's d = 1.0), and improved quality of life (physical) (Z = -1.68, p = 0.09, Cohen's d = 0.6) at the 3-month follow-up compared to the controls. A focus group conducted immediately after the intervention revealed three major themes: Impacts on the family caregivers, Impacts on the people with dementia, and Difficulty in practicing mindfulness. Conclusion: The findings support the feasibility and preliminary effects of the modified mindfulness-based cognitive therapy on reducing the stress of caregivers and improving their psychological well-being. Some potential effects on people with dementia (e.g., improvements in behavioral problems) were reported by the caregivers. A future study with a larger and more diverse sample is proposed to evaluate the longer-term effects and generalizability of the modified mindfulness-based cognitive therapy and the impacts on people with dementia.
Aims and objectives The aims were to (a) identify how many older people with cognitive impairments are living in modified homes and (b) explore associated factors, and (c) examine the mediating effects that their caregivers’ information needs and perceptions of fall risk and other factors. Background Older people and their informal caregivers may consider implementing home modifications as an effective strategy for fall prevention. However, there is a lack of information on which older people's homes receive modifications and the various factors associated with such modifications among community‐dwelling older people with cognitive impairments. Design This cross‐sectional and correlational study utilises a secondary data analysis. Methods The data for this secondary analysis were taken from the 2015 National Online Survey of Caregivers, which includes information provided by 226 adult caregivers for older people with cognitive impairments. Descriptive analyses, hierarchical binary logistic regression and structural equation modelling were performed based on the Andersen and Newman framework of health services utilisation. Results Overall, 46.5% of the older people lived in modified homes. Older people's impaired activities for daily living (ADLs), caregivers’ information needs and perceptions of fall risk were all associated with home modifications (all p values<0.05). Caregivers’ information needs mediated the relationship between impaired ADLs and home modifications (indirect effect = 0.026, p < 0.05), whereas the caregivers’ perceptions of fall risk did not. Conclusions Older people with both cognitive and functional impairments are more likely to modify their home on behalf of care recipient's staying at home. Caregivers’ information needs should thus be prioritized when considering home modifications to facilitate caring for older people with impaired ADLs. Implication for practice Nurses and other healthcare professionals should be prepared to offer appropriate information and comprehensive assessments of older people's conditions with regard to home modifications.
Background: A quarter of people in general hospitals have dementia. Limited existing studies suggest that hospital care experiences of people living with dementia, and the involvement of their families in care, may be suboptimal. Objectives: The objectives of this study were to explore how family involvement impacts upon experiences of hospital care for people living with dementia. Design: A qualitative ethnographic study. Methods: Ethnographic data were collected from two care of older people general hospital wards. Data were collected via observations, conversations and interviews with people living with dementia, families and staff. In total, 400 hours of observation and 46 interviews were conducted across two 7–9 month periods. Results: People living with dementia could experience a lack of connection on multiple levels - from pre-hospital life as well as life on the wards – where they could spend long periods of time without interacting with anyone. There was great variation in the degree to which staff used opportunities to involve families in improving connections and care. When used, the knowledge and expertise of families played a crucial role in facilitating more meaningful interactions, demonstrating how person-centred connections and care are possible in busy hospital settings. Despite such benefits, the involvement of families and their knowledge was not routine. Care was required to ensure that family involvement did not override the needs and wishes of people living with dementia. Conclusions: This study demonstrates the benefits of involving families and their knowledge in care, advocating for family involvement, alongside the involvement of people living with dementia, to become a more routine component of hospital care.
Objectives: This study aimed to review the effectiveness of low-intensity cognitive behavioral therapy (CBT)-based interventions for informal dementia caregivers when compared to non-active control conditions. Design: Literature searches were conducted in databases of published (PsycINFO, MEDLINE, CINAHL, Scopus) and unpublished (Open Grey, ISRCTN registry, ClinicalTrials.gov, ProQuest) literature. Individual meta-analyses were conducted for each outcome variable. Pooled intervention effect estimates were calculated as Hedge's g using a random-effects model.Included studies: Studies examining the effect of low-intensity CBT-based interventions for informal caregivers for people with any progressive dementia were included. Randomized controlled trials and controlled clinical trials were included. Measurements: Outcomes included the psychological variables of anxiety, depression, burden, and distress (defined as stress or strain). Results: A total of five studies reported anxiety outcomes, 12 reported on depression, three reported on burden, and six reported distress outcomes. Results demonstrated a significant effect of low-intensity CBT-based interventions in reducing all examined psychological difficulties. Small effect sizes were found for anxiety (g = 0.35), depression (g = 0.27), and distress (g = 0.33). A medium effect was found for burden (g = 0.53). Conclusions: The results provide initial support for low-intensity CBT-based interventions for dementia caregivers. Clinical implications and research recommendations are explored. Strengths and limitations of the study are discussed.
Purpose: To identify the information and communication needs of Hispanic family caregivers for individuals with Alzheimer’s Disease and Related Dementias (ADRD) and the manner in which online tools may meet those needs. Methods: We conducted 11 participatory design sessions with 10 English- and 14 Spanish-speaking urban-dwelling Hispanic family caregivers and gathered data using a survey, collage assemblage, and audio and video recordings. Four investigators analyzed transcripts of audio recordings with a coding framework informed by several conceptual models. Results: Participants had an average age of 59.7 years, were mostly female (79.2%), and had cared for a family member with ADRD for an average of 6.5 years. All participants accessed the Internet at least once a week with 75% ≥ daily. Most used the Internet to look up health information. All participants reported caregiver attributes including awareness of the disease symptoms or behaviors. The majority reported information needs/tasks (91.7%), communication needs/tasks (87.5%), and need for online tools (79.2%). Conclusion: Hispanic caregivers of individuals with ADRD reported key information and communication needs/tasks. Only Spanish-speaking participants reported Internet and technology use deficits suggesting the requirement for further technology support. Data show a need for online tools to meet the needs of caregivers.
Introduction: Specific mobility programmes can delay functional decline in people with dementia (PwD). Family caregivers (FCs) can be relieved from care-related burden by counselling services. Respite care is a short-term inpatient care service (1-8 weeks of stay). Respite care centres (RCCs) can function as support structures for dementia care arrangements through caring-based mobility training of PwD and counselling sessions for their FCs. However, no systematic mobility or counselling programmes exist in this setting in Germany or the rest of the world. The aim of the development and testing of a dementia-specific respite care concept (DESKK) study is the development and testing of an evidence-based mobility and counselling programme for PwD and their FCs that is suitable for the respite care setting. Methods and analysis: A pilot-based, quasi-experimental evaluation study will be conducted in a specialised RCC for PwD. To evaluate the acceptance and usability of the development and testing of a DESKK concept, qualitative data will be collected from the RCC staff and FCs via semistandardised interviews. Quantitative data will be collected using instruments to assess effect tendencies of the concept related to mobility (PwD) and burden (FCs). Furthermore, a mixed-methods triangulation approach will be conducted. Ethics and dissemination: The protocol, informed consent and accompanying material given to patients were submitted by the investigator to the Ethical Review Committee of the German Society of Nursing Science. The project was examined and finally approved on 31 January 2017 (Number: 16-27). Prior to obtaining written consent for study participation, information must be given to all of the study participants in verbal and written form. The results of the study will be presented at national and international conferences and published in peer-reviewed journals. After the concept is finalised, a practice-friendly manual will be developed in which implementation components are described for other RCCs.
Family caregivers face ongoing, formidable stress and burden. Caregivers need sustainable support to maintain resilience. We aim to identify challenges, possible solutions that are resources for resilience, and expected consequences from the perspective of 39 family caregivers of hospice patients with dementia. The resilience framework was used to guide the coding and synthesis of the qualitative data. Identified challenges included difficulties in communication, providing care and decision-making, lack of knowledge, emotional challenges, concern about care facility selection, death with dignity, and lack of public awareness. Resilience resources for caregiving challenges were identified at the individual, community, and societal levels. Anticipated benefits of using these resources included the ability to provide better care and have a better quality of life for both patients and caregivers. The findings of this study can guide the design and implementation of supportive interventions designed for family caregivers of hospice patients with dementia to bolster available resilience resources.
BACKGROUND: Dementia is a cause of disability and dependency associated with high demands for health services and expected to have a significant impact on resources. Care policies worldwide increasingly rely on family caregivers to contribute to service delivery for older people, and the general direction of health care policy internationally is to provide care in the community, meaning most people will receive services there. Patient safety in primary care is therefore important for future care, but not yet investigated sufficiently when services are carried out in patients' homes. In particular, we know little about how family carers experience patient safety of older people with dementia in the community. METHODS: This was an explorative study, with qualitative in-depth interviews of 23 family carers of older people with suspected or diagnosed dementia. Family carers participated after receiving information primarily through health professionals working in dementia care. A semi-structured topic guide was used in a flexible way to capture participants' experiences. A four-step inductive analysis of the transcripts was informed by hermeneutic-phenomenological analysis. RESULTS: The ways our participants sought to address risk and safety issues can be understood to constitute protective practices that aimed to prevent or reduce the risk of harm and/or alleviate damage from harm that occurs. The protective practices relate to four areas: physical harm, economic harm, emotional harm, and relational harm. The protective practices are interlinked, and family carers sometimes prioritize one over another, and as they form part of family practice, they are not always visible to service providers. As a result, the practices may complicate interactions with health professionals and even inadvertently conceal symptoms or care needs. CONCLUSIONS: When family caregivers prevent harm and meet needs, some needs may be concealed or invisible to health professionals. To recognize all needs and provide effective, safe and person-centered care, health professionals need to recognize these preventive practices and seek to build a solid partnership with family carers.
This article addresses the dilemmas concerning legislation, individual autonomy and the reality of everyday life for people coping with dementia. We describe and analyse decision-making in relation to older people with dementia in Sweden, within the area of social work regulated by the Social Services Act and the Parental Act. Swedish legislation is based on the individual’s autonomy and capacity to consent to services without anyone having legal authority to decide on behalf of the individual. Based on data from interviews with family caregivers living at home, decision-making through family caregivers is discussed and formal guardianship is also considered. Swedish legislation leaves individuals with dementia and family caregivers in a vacuum between self-determination and full autonomy with the ideal of citizenship emphasised and recognised in the Social Services Act on the one hand, and on the other, a strong need for support in everyday life and with decision-making.
Video feedback at home (VFH) aims to improve the well-being of informal caregivers and persons with dementia by training the caregiver to communicate successfully. This feasibility study had 2 aims: (1) to investigate possible effects regarding VFH, caregiver self-efficacy and the burden experienced, and the frequency of challenging behavior in persons with dementia, and (2) to perform a process evaluation of barriers and facilitators regarding the use of VFH. The respondents were caregivers of home-dwelling persons with dementia participating in VHF (N = 10), a group of caregivers who declined participating in VFH (N = 18), stakeholders (N = 6), and field experts (N = 55). The assessments performed were Positive and Negative Affect Scales, Cohen-Mansfield Agitation Inventory, Sense of Competence Scale, semistructured interviews, and questionnaires. Results demonstrated that caregivers were satisfied with VFH and that various (sub)scores on questionnaires improved. Caregivers mentioned a reluctance toward being filmed and both caregivers and referrers were unfamiliar with VFH. Recommendations have been made for health-care professionals and researchers to overcome these barriers.
Importance: In the United States, 16 million family caregivers provide long-term care for patients with dementia. Although one's physical, mental, and cognitive health depends on sleep, many caregivers experience chronic stress, and stress is typically associated with worse sleep quantity and quality. Objective: To quantify the extent, nature, and treatability of sleep problems in dementia caregivers. Data Sources: PubMed and Scopus databases were systematically searched for articles published through June 2018 using the following keywords: caregiver or spouse or caretaker AND sleep or circadian AND dementia or Alzheimer. Backward citation tracking was performed, and corresponding authors were contacted for additional data to conduct meta-analyses and pooled analyses. Study Selection: Two reviewers independently screened 805 studies to identify those that reported sleep duration or sleep quality in caregivers of patients with dementia. Data Extraction and Synthesis: Following the PRISMA guidelines, 2 reviewers independently extracted data from all studies and conducted National Heart, Lung, and Blood Institute study quality assessments. Meta-analyses with random-effects models were performed to evaluate sleep duration, sleep quality, and sleep interventions in dementia caregivers. Main Outcomes and Measures: Sleep quality and total sleep time were measured by polysomnography, actigraphy, and self-report. Results: Thirty-five studies were analyzed with data from 3268 caregivers (pooled mean age [SD of sample means], 63.48 [5.99] years; 76.7% female) were analyzed. Relative to age-matched control noncaregiver adults, caregivers had lower sleep durations akin to losing 2.42 to 3.50 hours each week (Hedges g = -0.29; 95% CI, -0.48 to -0.09; P = .01). Sleep quality was significantly lower in caregivers (Hedges g = -0.66; 95% CI, -0.89 to -0.42; P < .001), but caregivers who underwent sleep intervention trials had better sleep quality than caregivers who did not receive a sleep intervention (Hedges g = 0.35; 95% CI, 0.20-0.49; P < .001). Conclusions and Relevance: Sleep debt is known to have cumulative associations with physical, mental, and cognitive health; therefore, poor sleep quality in dementia caregivers should be recognized and addressed. Although the caregiving role is stressful and cognitively demanding by its nature, better sleep quality was observed in caregivers who received low-cost behavioral interventions.
Based on stress coping theory, this study investigated whether and how positive aspects of caregiving (PAC) and religiosity buffered the association between caregiving burden and desire to institutionalize (DTI). Secondary data (N = 637) were drawn from the baseline assessment of the Resources for Enhancing Alzheimer’s Caregiver Health II project. Descriptive analysis, bivariate correlation, and multiple linear regressions were conducted. The results indicated that higher levels of caregiver burden, daily care bother, and Revised Memory and Behavioral Problem Checklist bother were all significantly associated with higher level of DTI. Both PAC and religious coping were negatively associated with DTI; however, only PAC was significant. Only the interaction between daily care bother and religious coping was significant, which indicated that the harmful effect of daily care bother on DTI was significantly buffered among those who have religiosity. Study findings have important implications for policy makers and for providers who serve dementia family caregivers.
Many people living with dementia eventually lose the capacity to make their own decisions and will rely on another person – a surrogate decision maker – to make decisions on their behalf. It is important – especially with the increasing prevalence of dementia – that the role of surrogate decision maker is understood and supported. This qualitative study explored the experiences of 34 surrogate decision makers of persons living with dementia in Australia. Face-to-face and telephone interviews were conducted over six months in 2014. Five themes were identified: becoming the only – or main – surrogate decision maker; growing into the role of surrogate decision maker; dealing with the stress of making decisions; having to challenge healthcare professionals; and getting support – or not – from family members. An overarching construct tying the themes together is the description of the participants’ experience as being on a difficult and unpredictable journey. Healthcare professionals can provide support by acting as empathic guides on this journey.
People with dementia and family carers often use calendars to support time orientation to maintain routine. However, little is known about the use of calendars as a compensatory strategy. This study examines the experience and practicalities of using calendar reminders from the perspective of people with dementia and family carers. Six dyads were recruited and interviewed at home. Interpretative Phenomenological Analysis was used to develop a narrative interpreted from an occupational therapy perspective. The themes were reflected on during two subsequent focus groups. Findings suggested that calendars are used either intensively as external memory records or more casually and randomly for reassurance. The familiarity and location of the calendar and its utility to the person with dementia and carer, all contribute to its efficacy. For carers the experience of supporting calendar reminders encompasses practical, cognitive and emotional effort. There was little awareness amongst participants of electronic assistive technology.
Purpose: The purpose of this study was to clarify the concept of death preparedness for family caregivers in dementia. Conceptualization was required to support the assessment, promotion, and operationalization (ie, measurement) of death preparedness through palliative care interventions such as advance care planning. Methods: Rodgers evolutionary method of concept analysis was selected to guide this study because of the dynamic nature of death preparedness influenced by context, setting, and time. A comprehensive literature search was conducted. Authors performed constant comparative analysis to identify and interpret surrogate/related concepts, attributes, antecedents, and consequences of death preparedness. Results: Most importantly attributes included (1) knowing and recognizing the symptoms of decline in dementia and what dying looks like; (2) understanding emotions and grief responses; (3) accessing and appraising supports needed to manage and care for dying; (4) organizing affairs and completing tasks in advance; (5) accepting that losses are inevitable and imminent; (6) reflecting on caregiving and finding meaning, “a silver-lining”; and (7) closing, reconciling, and renewing relationship bonds and completing the family member’s life. Discussion: This study contributed a full definition of death preparedness in dementia. Findings aligned with/expanded upon Hebert et al Theoretical Framework of Preparedness for End-of-Life. The use of problem- and emotion-based coping strategies by caregivers with support from health-care providers to promote feelings of death preparedness (including self-efficacy and control) and minimize uncertainty was the implication of this study. Development of a holistic preparedness instrument is underway.
Background: Day-care and telephone counseling have been discussed as effective support measures for caregivers of people with cognitive impairment. Methods: In a two-arm cluster-randomized trial involving multicomponent therapy for cognitively impaired persons in day-care centers and telephone counseling for their caregivers versus treatment as usual (TAU), we investigated long-term effects on caregivers' burden and depressiveness. Person-caregiver dyads involving home-dwelling persons with MCI, mild dementia, or moderate dementia were eligible. Day-care centers were randomized into an intervention group (IG) or a control group (CG). Outcome assessors were blinded. Out of 359 caregivers who had completed a 6-month intervention phase (nIG = 205, nCG = 154), a total of 304 of them were available at the 12-month follow-up (nIG = 173, nCG = 131). Instruments for assessing were the Burden Scale for Family Caregivers - short version (BSFC-s) (caregiver burden) and the Well-Being Index Score (WHO-5) (depressiveness). Mixed ANOVAs were used for the main analyses; descriptive statistics and subgroup analyses were additionally performed; secondary analyses involved multiple linear regressions for the main outcomes that were significant in the unadjusted main analysis. Results: At follow-up, crude mean differences showed a nonsignificant advantage for the IG in caregiver burden [IG: -.20 (SD = 5.39) vs. CG:.76 (SD = 5.49), p =.126, d =.177] and depressiveness (reverse scored) [IG: -.05 (SD = 5.17) vs. CG: -.98 (SD = 5.65), p =.136, d =.173]. For caregiver burden, a mixed ANOVA resulted in significant main effects of group (F (1, 302) = 4.40; p =.037) and time (F (1.88, 568.96) = 3.56; p =.032) but not a significant interaction. The largest effects were found for the "mild dementia" subgroup (d =.443 for caregiver burden and d =.520 for depressiveness). Discussion: Positive long-term effects of a combined intervention involving telephone counseling for caregivers and multicomponent activation for patients were observed especially for mild dementia. However, the treatment effects washed out after the intervention ended. Trial registration: ISRCTN16412551 (date: 30 July 2014, retrospectively).
Background: Caring for someone with dementia can be physically and emotionally difficult. Acting as a caregiver can make it difficult to access sources of support, particularly in the later stages of dementia. This paper reports the development and presents the targets (subject areas) and components of a prototype website to support family caregivers of a person with dementia towards the end of life. Methods: Adopting an iterative approach and co-production methods the development process consisted of four stages: Stage1-Synthesis of data: Three sources of data (interviews, systematic review and theory) were synthesised using tabulation, to identify the targets of the prototype; Stage2-Identifying intervention targets and components: A research development group (health practitioners, a family caregiver and academic experts) met to discuss the development, using a modified nominal group process, refining the synthesis from stage 1; Stage3-Developing the intervention prototype: An outline of the prototype was developed based on stage 1 and 2; and Stage4-User testing: Interviews with caregivers testing the prototype website. Results: Qualitative interviews with caregivers identified four targets for the intervention: 1) feeling prepared and equipped; 2) feeling connected and supported; 3) valuing themselves as a caregiver and as an individual; 4) maintaining control of the caring situation and being the coordinator of care. The systematic review provided evidence on how and what components could address these targets, including providing information, peer support, contact with professionals, and psychological support. Theory helped to narrow the focus within each of these targets. Active discussion with the research development group and end users provided an outline of the prototype website. The prototype website presented addresses these targets with written information, videos from other caregivers, and peer and professional support sections. The subject areas covered included expectations at the end of life, support with day-to-day caring, care planning, and communication. Conclusions: This paper provides a detailed account of the development process of a prototype website for caregiver support. The transparent methodology and key lessons learnt from developing the prototype should help those who are developing similar interventions, across complex, progressive conditions and not just limited to dementia.
Objectives: To examine the effects of the group benefit-finding therapeutic intervention (BFT) for Alzheimer family caregivers up to 10-month follow-up. Methods: This was a cluster-randomized double-blind controlled trial in social centers and clinics. Participants included 129 caregivers. Inclusion criteria were 1) primary caregiver aged 18 years and older and without cognitive impairment, 2) providing 14 or more care hours per week to a relative with mild-to-moderate Alzheimer disease, and 3) scoring 3 or more on the Hamilton Depression Rating Scale. Exclusion criterion was care-recipient having parkinsonism or other forms of dementia. BFT (using cognitive reappraisal to find positive meanings) was evaluated against two forms of psychoeducation as controls—standard and simplified (lectures only) psychoeducation. All interventions had eight weekly sessions of 2 hours each. Primary outcome was depressive symptoms, whereas secondary outcomes were global burden, role overload, and psychological well-being. Measures were collected at baseline, postintervention, and 4- and 10-month follow-up. Results: Mixed-effects regression showed that BFT's effect on depressive symptoms conformed to a curvilinear pattern, in which the strong initial effect leveled out after postintervention and was maintained up to 10-month follow-up; this was true when compared against either control group. The effect on global burden was less impressive but moderate effect sizes were found at the two follow-ups. For psychological well-being, there was an increase in the BFT group at 4-month follow-up and a return to baseline afterward. No effect on role overload was found. Conclusion: Benefit-finding reduces depressive symptoms as well as global burden in the long-term and increases psychological well-being in the medium-term.
Resources for Enhancing All Caregivers Health (REACH VA) is a behavioral intervention for caregivers of individuals with dementia disseminated in the VA. Although shown to improve caregiver and care recipient outcomes, some caregivers continue to experience depression or caregiver burden following the intervention. Factors that predict symptom remission following REACH VA are unknown. The present study investigated attachment, social support, and psychopathology as predictors of symptom remission for family caregivers who completed REACH VA. Caregivers who do not remit perceive lower levels of social support from loved ones, endorse poorer attachment quality, and have more personality disorder characteristics, particularly affective instability. These factors that impair caregivers’ abilities to be effectively attuned to the needs of their care recipients and to reap benefits from a brief and focused behavioral intervention such as REACH VA. Interventions that target caregiver interpersonal functioning and emotion regulation skills may be helpful to those who do not respond to REACH VA.
A cross-sectional study design involving a total of 230 participants, recruited through Alzheimer's Disease Foundation Malaysia (ADFM), was adopted to access and correlate caregiver strain index (CSI) and resilience (RES) levels of the AD caregivers with various patients’ and caregivers’ factors. Findings revealed that 77.7% of caregivers had a high level of stress, and there was a significant negative correlation between RES and CSI (P < 0.001). Care recipients’ physical function was negatively associated with CSI level. Caregivers’ gender and employment status were not directly associated with CSI but were significantly associated with caregivers’ RES level. Among the mediator variables, years of care was related to increase CSI and adult-children of AD patients experienced a higher level of caregiver strain compared to the other caregiver groups (P = 0.025). Thus, interventions to improve the family caregivers’ RES level, and support for AD patients will be helpful in lowering the strains of AD caregivers.
When people with dementia are hospitalised, their capacity to communicate with the staff may be limited, compounding risks of distress and other adverse outcomes. Opportunities for carers to share relevant information to inform appropriate person-centred care are also limited. This four-phase mixed methods study aimed to develop an evidence-based family carer–staff communication form, the Focus on the Person form, to address this concern. In Phase I, a literature review plus consultation with clinicians and carers informed form development. In Phase II, the professionally formatted form was piloted by 31 family carers, who were then interviewed about their experiences. These data, combined with data from 30 hospital staff members who participated in Phase III focus groups, led to final, Phase IV, refinements of the form. The form now provides an opportunity for families to inform the person-centred care of people with dementia in hospital, potentially improving outcomes for this vulnerable group.
Objective: The purpose of this study was to examine the most effective and available English and Spanish language caregiver assessments for providers and caregivers. Methods: Assessments were included if they screened for caregiving-related concerns, including stress, depression, and caregiving burden and could be administered directly to caregivers in person or online. Results: Eighteen assessments are designed to assess caregiver burden, distress, depression, and grief. Six did not have psychometric data to support efficacy but are widely used in clinical and research settings. Six were validated in Spanish, and one other is available in Spanish but not validated. Conclusion: As many as 80% of care recipients are cared for in the home by family members who act as informal caregivers. Caregivers of persons with dementia may experience depression symptoms, high caregiver burden, and feelings of being constrained. Due to the lack of psychometric evidence available, the validity of some assessments is questionable.
Objectives: 1Explore the ability of trained volunteers to provide person-centred care focusing on nutrition/hydration support, hearing/visual aids and activities in rural hospitals for older patients with dementia and/or delirium. 2Explore the impacts and challenges of volunteer care for family carers and hospital staff. Methods: Staff were surveyed about their confidence, stress and satisfaction at 6 months post-implementation. Focus groups with staff and interviews with families explored program successes, challenges and enabling factors. Results: Volunteers integrated themselves into the care team, providing person-centred care, increased safety and quality of care for patients and a reduced burden for staff and families. Key enablers were clear processes for screening, training and supporting volunteers. Key challenges included initial role delineation, staff/volunteer trust and sustainability. Conclusion: The program is reported by families and staff as being effective in addressing the main barriers to providing person-centred care for older adults with cognitive impairment in rural acute hospitals.
While dementia caregivers are regarded as a population with high unmet needs, there is little consensus as to how caregivers’ needs should be conceptualized and measured. This article describes how dementia caregivers’ needs are currently assessed in the scientific literature with the goal of suggesting guidelines for the enhancement of future measurement of caregiver needs. A review of 26 articles identified overarching themes within measurement approaches including variation in methodological rigor, proxy indicators of need, dual needs assessment of caregiver and person with dementia (PWD), and third-party needs assessment. We recommend future research dedicate theoretical attention to the conceptualization and classification of caregivers’ needs to build a stronger foundation for measurement. The measurement development process should capitalize on mixed-methodology and follow instrument development and validation guidelines set forth by measurement theory. Reliable and valid instruments are essential to developing services and policies that address dementia caregivers’ needs.
Aims: To identify dementia-friendly communities' indicators and their current conditions in Taiwan from the perspectives of people with dementia and dementia-family caregivers.; Design: This qualitative study explored the opinions and experiences of people with dementia and dementia-family caregivers regarding dementia-friendly communities.; Methods: Participants (16 people with dementia and 20 family caregivers) were recruited from neurological clinics, day care centers for people with dementia and support groups for family caregivers in the Taipei community from July - October, 2016. Data were collected in face-to-face interviews, which were tape recorded and transcribed verbatim. Transcripts were analyzed by Miles and Huberman's (1994) guidelines.; Results: Similar indicators for dementia-friendly communities were identified in Taiwan as in other countries, including dementia-friendly care services, dementia-friendly hospitals, dementia-friendly community environment, dementia-friendly transportation, dementia-friendly stores and shops, dementia friendly people, integrated dementia-related information and community contribution- and -involvement opportunities for people with dementia. However, Taiwanese people with dementia and family caregivers described no emphasis on the potential of people with dementia to contribute to developing dementia-friendly communities and more top-down expectations for the government's role.; Conclusion: These indicators can be a guide for developing and evaluating dementia-friendly communities in Taiwan. Differences between Taiwan and Western developed countries in indicators for dementia-friendly communities can be further explored. Community nursing assessment, interventions and evaluation based on these dementia-friendly communities indicators can be further developed.; Impact: This study developed indicators for dementia-friendly communities in an Asian country. These indicators can be used as a guide for developing and evaluating dementia-friendly communities.
Objectives: Quality of life among Hong Kong's family dementia caregivers is a current heightened public health concern. This was one of the first East Asian studies to examine the role of family expressed emotion (EE) in the negative caregiver outcomes associated with dementia caregiving. EE comprises overinvolved and critical communications in families of people with mental illness. In this research, caregiver EE was evaluated as a mediator of the relationship between behavioral and psychological problems associated with dementia (BPSD) and negative caregiver outcomes. Method: Participants were 89 Hong Kong family caregivers (79% female, 84% married, 43% >50 years of age) of people with diagnosed dementia, recruited from elder day care centers. Caregivers completed the Neuropsychiatric Inventory (NPI), Cohen Mansfield Agitation Inventory (CMAI), Level of Expressed Emotion scale (LEE), Zarit Burden Interview, and Center for Epidemiological Studies Depression Scale (CES-D). Results: Agitation, delusions, hallucinations, aggression and irritability were BPSD most associated with caregiver burden and depression. EE significantly mediated the BPSD-negative caregiver outcome relationship. Among EE subscales, intrusiveness was significantly more common and less associated with negative caregiver outcomes. Caregiving hours, low family support, and religious nonaffiliation were associated with EE and poorer caregiver outcomes. Conclusions: The negative impact of BPSD on dementia caregivers in Hong Kong is influenced by EE. Higher scores on EE intrusiveness may be partly accounted for by filial piety, a strong sense of family responsibility characterized by high attentiveness to elderly family members. As EE is a potentially modifiable factor, interventions are considered.
Objectives: To explore and compare levels of mental health, care burden, and relationship satisfaction among caregiving spouses of people with mild cognitive impairment or dementia in Parkinson disease (PD-MCI or PDD) or dementia with Lewy bodies (DLB). Methods: Spouses (n = 136) completed measures of mood, stress, resilience, general health, quality of life, care burden, and relationship satisfaction, as well as sociodemographic factors. Additionally, data on motor and neuropsychiatric symptom severity of people with PD-MCI, PDD, or DLB were obtained in a subsample. Results: Most spouses were married women (>85%) who provided a median of 4 years of care and 84 hours of weekly care. Among these, relationship dissatisfaction, stress, anxiety, care burden, and feelings of resentment were common. Spouses of people with PDD and DLB had significantly higher rates of burden, resentment, and depression compared to spouses of people with PD-MCI. Furthermore, unique group differences emerged whereby spouses of people with PDD had significantly longer duration of care provision, higher stress, more relationship dissatisfaction, and fewer positive interactions, compared to PD-MCI group, whereas anxiety and lower levels of mental health were prominent in spouses of people with DLB, compared to PD-MCI group. Despite this, the majority of spouses reported good quality of life, resilience, and satisfaction with the caring role. Conclusion: Both PDD and DLB significantly contribute to poorer mental health and higher levels of care burden in spouses. Clinicians should actively screen the risk of burden, stress, depression, and anxiety among caregiving spouses of people with these conditions.
Background: Dementia is one of the greatest health and care priorities globally. Caring for persons with dementia is a challenge and often leads to negative psychological, physiological and financial consequences for informal carers (family members or friends). Many informal carers experience moderate to severe levels of burden. Advances in technology have the potential to assist persons with dementia and their carers, through assistive technology (AT) devices such as electronic medication dispensers, robotic devices and motion detectors. However, little is known about informal carers’ experience and the impact of these technologies on them. This review aims to investigate the outcomes and experience of carers of persons with dementia, who live at home and use AT. Method: MEDLINE, Embase, CINAHL, AMED, ALOIS, PsycINFO, Trial registries and OpenGrey databases will be searched for studies of any design that have investigated carer experience and/or outcomes of AT use for persons with dementia living at home. Manual searches from reference lists of relevant papers will also be undertaken. Outcomes of interest are carers’ self-reported outcomes (which include perceived burden, quality of life and wellbeing) and carer experiences (such as usefulness, benefits and disadvantages of AT and impact on caregiver/care receiver relationship). Two independent reviewers will screen identified papers with pre-defined eligibility criteria and extract data using a bespoke extraction form. Discrepancies will be resolved in discussion with a third reviewer. A synthesis of eligible studies and summary will be provided. Discussion: A systematic review of quantitative, qualitative and mixed methods evidence of informal carers’ experience of AT use in dementia in the community will be carried out. It is anticipated that this will highlight (1) investigations on impact of AT use on carers, (2) outcome measures and experience questionnaires that have been used and (3) the types of studies carried out so far on this topic. The results from the review will be presented in a summary matrix of common types (e.g. mobile phones, alarms) and uses (e.g. communication, safety, personal care) of AT in dementia care and also identify AT that is not usually available through government or health system funding
Purpose : In this qualitative interview study we investigated the experiences of family members to cancer patients. Our objective was to explore and to differentiate their needs from the needs of cancer patients. Methods : Five focus groups and six individual narrative interviews with 17 family members to cancer patients in Sweden were conducted and compared with 19 cancer patient interviews. Our analysis was inspired by classic grounded theory. Results : Family members to cancer patients expressed own morbidity connected to high stress levels and difficulties in recognizing own stress due to ongoing comparisons with the cancer patient. Family members were trapped in a momentary terror-like situation where they became their sick relative’s safety net. A percieved inability to improve their loved one’s well being contributed to a feeling of guilt. The longing for it all to end was encumbered with shame since the end included possible death. Conclusions : By recognizing cancer as a disease striking both body and relationships, family members are given precedence over their own struggles, differentiated from the patient’s experiences. We define differences in needs between cancer patients and family members. Family members to cancer patients may be supported in developing balancing strategies towards less stress, increased safety and moments of contentment.
Aims: Most caregiving literature focuses on individual-level outcomes, with sparse knowledge on family-level outcomes. Therefore, the purpose of this study was to describe the family quality of life (FQOL) of people with dementia and identify factors that influence their FQOL, as perceived by family caregivers. Methods: A convenience sample of 31 family caregivers of people with dementia was interviewed using a modified version of the Family Quality of Life Survey (FQOLS-2006). Statistical analyses were conducted to examine domain level and global FQOL outcomes. Results: Although caregivers reported the highest level of attainment in the domain of family health, they were also least satisfied with this domain. Global FQOL was significantly associated with caregiver health, care-recipient co-morbidities of psychological and motor problems, and three (health, leisure, community) of the nine FQOL domain level outcomes. Conclusion: Encouraging families to increase leisure participation can improve their health and global FQOL
Introduction: Carers of persons with dementia (PWD) experience high levels of burden and distress and may use criticism in an attempt to change the behavior of PWD and thereby reduce their distress. We hypothesized that carer distress and criticism would each have an impact on the psychological well-being of the PWD and examined whether criticism mediates the association between carer distress and PWD psychological well-being.; Methods: We recruited 61 persons with a recent diagnosis of dementia and their carer via U.K. dementia services and assessed at 2 time points 6 months apart. Carers completed questionnaire measures of burden and distress. We coded critical comments from a Camberwell Family Interview. PWD completed questionnaire measures of quality of life, depression, and anxiety. We conducted correlation, regression, and mediation analyses to explore the relationship between carer variables and PWD psychological outcomes and whether criticism mediated any relationship found.; Results: Carer distress, carer critical comments, and PWD anxiety and depression at 6-month follow-up were all significantly correlated. Baseline carer distress predicted poorer quality of life in PWD at 6-month follow-up. The number of carer critical comments significantly (p < .01) mediated the effect of carer distress on PWD quality of life.; Discussion: Interventions addressing carer burden and distress and offering coping strategies to help them to reduce criticism of the PWD would improve the quality of life of those affected by dementia.
Objective: To identify, in caregivers of patients with Alzheimer’s disease (AD) dementia, factors associated with subjective (personal, physical, emotional, and social) and objective (informal caregiver time and costs) caregiver burden. Design: Prospective longitudinal European observational study: post-hoc analysis. Setting: Clinic. Participants: Community-dwelling patients in France and Germany aged ≥ 55 years (n = 969) with probable AD and their informal caregivers. Measurements: Mini-Mental State Examination (MMSE), Alzheimer’s Disease Cooperative Study—Activities of Daily Living (ADCS-ADL), 12-item Neuropsychiatric Inventory (NPI-12), Zarit Burden Interview (ZBI), informal caregiver basic and instrumental ADL hours (Resource Utilization in Dementia instrument), and informal caregiver costs. Mixed-effect models of repeated measures (MMRM) were run, including baseline and time-dependent covariates (change from baseline [CFB] to 18 months in MMSE, ADCS-ADL, and NPI-12 scores) associated with CFB in ZBI score/informal caregiver time over 36 months (analyzed using linear regression models) and informal caregiver costs over 36 months (analyzed using generalized linear models). Results: Greater decline in patient function (ADCS-ADL) over 18 months was associated with increased subjective caregiver burden (ZBI), hours, and costs over 36 months. Increased behavioral problems (NPI-12) over 18 months also negatively impacted ZBI. Cognitive decline (MMSE) over 18 months did not affect change in caregiver burden. Conclusions: Long-term informal caregiver burden was driven by worsening functional abilities and behavioral symptoms but not cognitive decline, over 18 months in community-dwelling patients with AD dementia. Identifying the drivers of caregiver burden could highlight areas in which interventions may benefit both caregivers and patients.
BACKGROUND/OBJECTIVE Adult day services (ADSs) that provide community‐based supervised support for persons with dementia (PWD) may also function as a respite for familial caregivers to attend to self‐care needs. Guided by a revised version of the Andersen Healthcare Utilization Model, the objective of this study was to identify the association between use of ADSs and a missed physician's appointment among family caregivers for community‐dwelling familial PWD. A secondary objective was to identify other predisposing, enabling, and need factors associated with a missed physician's appointment. DESIGN Secondary analysis of baseline, cross‐sectional data from two randomized controlled trials (Advancing Caregiver Training, n = 272; and Care of Persons With Dementia in Their Environments, n = 237). SETTING Community. PARTICIPANTS Community‐dwelling caregivers for PWD (n = 509). MEASUREMENTS Missed physician's appointment was measured using the caregivers' self‐report of one or more missed physician's appointments (yes/no) in the past 6 months. ADS use was measured using the caregivers’ self‐report of ADS use (yes/no). RESULTS Over a third of the caregivers utilized ADSs for their PWD. Caregivers who utilized ADSs for their familial PWD were 49% less likely (95% confidence interval = 0.32‐0.81) to miss a physician's appointment in the past 6 months. More black compared to white caregivers missed appointments regardless of ADS use. Caregivers with increased chronic health conditions were more likely to miss a physician's appointment compared to those with fewer conditions. CONCLUSION ADSs’ provision of respite enables caregivers the time to address self‐care needs by decreasing the likelihood that caregivers miss a physician's appointment. Findings suggest that ADSs may promote positive health behaviors for caregivers and should be expanded as part of comprehensive dementia care for families. Factors associated with missed physician appointments need further examination and intervention to support black caregivers.
Objective: To identify care and support needs, as reported by people with dementia and their spousal carers living in the community in metropolitan Western Australia. Methods: An interpretive description approach was utilised. Semi‐structured interviews were conducted with 10 dyads of spousal carers and people with dementia. Comparative analysis was used to develop themes regarding need, which were reviewed using two focus groups of spousal carers. Results: Three major themes were developed through analysis of data from the interviews and were refined by the focus groups: (a) environmental enablers to support care; (b) strong caring relationships; and (c) adaptation of daily life roles. Conclusions: As dementia progresses, continued support to maintain participation in meaningful activity is needed. Strong caring relationships, knowledge and an understanding of dementia among health professionals, service providers and family members were key to maintaining support for the needs of people with dementia and their spousal carers.
Health and social sciences literature recognises the significance of psychological resilience in relation to stressful life events. Providing ongoing care for a friend or relative with dementia can be inherently stressful. The aims of this qualitative study were to: (a) explore discrepancies and congruency between definitions of resilience in the academic literature and carers own conceptualisations; (b) assess differences and similarities in conceptualisations of resilience between carers with high, medium and low resilience scores; (c) compare carers’ perceived level of resilience with the level of resilience when measured on a standardised tool. Participants were recruited from an earlier study examining levels of resilience and well‐being in UK carers of people with dementia. A subset of carers were identified using theoretical sampling, to ensure a diversity of participant characteristics and caring experience. Thirteen carers took part in semi‐structured interviews between September and October 2017. Interpretative description was used to elicit findings relevant to clinical practice. We found carers’ definitions were concordant with clinical and academic definitions described in the literature. However, they extended the concept and placed greater value on the role of self‐compassion. Carers recognised that the appearance of resilience may have negative consequences in terms of securing support from others. Scores on the Brief Resilient Coping Scale did not always match carers’ own perceptions of their level of resilience. Additionally, service providers’ offers of support did not always reflect carers’ priorities. Aligning these two areas would better enable carers and providers to work together to identify resources to support resilience.
Background and Objectives Persons with dementia (PWDs) often place greater importance on their care values (i.e. maintaining autonomy and social relations, choosing caregivers, avoiding being a burden) than family caregivers (CGs) perceive, which can detract from dementia care planning (e.g. care arrangements or surrogate decisions). Notable variability has been found across family care dyads (PWD and CG) in their perceptions of care values, suggesting that there may be multiple patterns of perception. The purpose of this study was to characterize distinct patterns of perception of care values in family care dyads. Design and Methods Using cross-sectional data from 228 community-dwelling family care dyads, we quantified dyads' average perceptions and incongruence in perceptions of the importance of everyday care values using multilevel modeling. These scores were then used in a latent class analysis to identify distinct patterns of perception, with the dyad as the unit of analysis. Results Two distinct patterns of care value perception were identified. 25% of dyads were labeled as "CG underestimating" due to lower average estimations of the importance of PWDs' care values, and a significant amount of dyadic incongruence. Underestimating dyads were characterized by a confirmed diagnosis of dementia, lower cognitive function, and younger age in PWDs, and higher relationship strain in the dyad. Implications Care dyads that fall into an underestimating pattern may be at greater risk for inadequate dementia care planning. Interventions to improve care planning in this higher-risk group may include care values identification with the PWD, strategies for alleviating relationship strain, early-stage planning, and disease education.
Due to the increasing social and economic costs of dementia, there are urgent calls to develop accessible and sustainable care for people with dementia and their caregivers. Multi-component non-pharmacological interventions (NPIs) appear effective in improving or maintaining daily functioning and well-being, but are typically labour-intensive for health care professionals, thus hindering access. The current study aimed to explore the feasibility and acceptability of a novel approach to widen access to NPI by involving caregivers to present part of the intervention and with staff from local support organizations instructed to train the caregivers. Trainers and caregivers were shown to comply with training instructions and the direct intervention costs were low. Feedback from trainers and caregivers was positive and well-being ratings from people with dementia and caregivers remained stable over time and caregivers’ sense of competence improved. The findings suggest that involving caregivers and trained non-professionals to provide the intervention is feasible and acceptable and could be a cost-effective solution to improve access to care.
Objective: To explore how caregivers are involved in making treatment decisions for older people living with dementia and a new diagnosis of cancer. Method: A systematic review of PubMed, CINAHL, PsycINFO, Web of Science, and Scopus databases was conducted. Studies recruiting formal or informal caregivers for older people with dementia and a diagnosis of cancer were considered for inclusion. Results: Of 1761 articles screened, 36 full texts were assessed for eligibility, and six were included in the review. This review has identified that health care professionals (HCPs) are often unaware of the coexistence or severity of dementia in cancer patients, and therefore fail to properly address care needs as a result. While caregivers are relied on to help make decisions, they have unmet information needs and feel excluded from decision-making. Conclusion: Treatment decision making in the context of older adults with dementia and a new diagnosis of cancer needs further research. This will help HCPs to understand their needs and improve the experience of decision making for both caregivers and the people that they care for.
Objective: The objective of this review was to synthesize evidence on the experiences and perceptions of spousal/partner caregivers of community-dwelling adults with dementia.; Introduction: Currently 47 million people in the world have a diagnosis of dementia and this number is predicted to climb to 75 million by 2030. The majority of care is provided by family members, particularly spouses/partners. Quantitative systematic reviews of spouse/partner caregivers demonstrate negative health effects for these caregivers. This review synthesized the qualitative evidence on the experiences of spousal/partner caregivers of people with dementia to further understanding how this care and the context of care contribute to the health and wellbeing of spousal/partner caregivers.; Inclusion Criteria: This review considered qualitative studies that explored the experiences of spousal/partner caregivers providing care for adults with dementia. The focus was on qualitative designs including, but not limited to, phenomenology, grounded theory, ethnography, action research, critical research and feminist research.; Methods: The search strategy used a three-step approach and was aimed at locating both published and unpublished studies. Key databases included: MEDLINE, CINAHL, Embase, PsycINFO, Sociological Abstracts, ISI Web of Science, and Dissertation Abstracts International. Grey literature was searched using keywords from the database searches. The databases were searched from inception to February 2017 and a mix of controlled vocabulary (i.e. MeSH, CINAHL headings) and keywords were used to capture all existing qualitative studies related to the experiences and perceptions of spousal/partner caregivers providing unpaid care for adults with dementia. During the title and abstract screening, only English and French articles were included. The recommended Joanna Briggs Institute approach to study selection, critical appraisal, data extraction and data synthesis was used. Seven of the 10 critical appraisal criteria were deemed essential, with exceptions identified for criteria 1, 6 and 7.; Results: Nineteen studies were included in the review. Study designs included phenomenology (eight), grounded theory (five), qualitative description (four), ethnography (one) and narrative inquiry (one). The total number of participants was 248 (164 women and 84 men). The overall quality of the studies was rated as moderate on the ConQual score, with dependability rated as moderate and credibility rated as high. One hundred and fifty-five findings were aggregated into four categories and two synthesized findings. The two synthesized findings were: "the expectation to care in the midst of uncertainty and unpredictability", and "the caregiver as hostage".; Conclusions: This review provides a comprehensive understanding that can inform spousal/partner caregiver policies and programs. Evidence is required on the experiences and perceptions of caregivers across the gender continuum. Interventions and interventional research that mobilizes the evidence to date is essential for the future of caregivers. The limitations to this review include: the possibility of missed studies, all study participants being in heterosexual relationships, and the majority of participants being Caucasian. Recommendations for practice, policy and research include: the need for awareness of the extent of change in the lives of the person with dementia and the spousal/partner caregiver, the importance of support and respite, the need to tangibly recognize the value of the unpaid caregiver in a way that preserves the health and wellbeing of this group, and research is required that is culturally sensitive and reflects the experiences of the lesbian, gay, bisexual, transgender, transsexual, queer, questioning, intersex, asexual, ally, pansexual (LGBTTQQIAAP) populations.
Purpose: As a first step toward developing a web-based Family-Health Information Management System intervention, we explored Hispanic dementia family caregiver's knowledge, use, and awareness of self-management principles and skills to address health and health care needs for themselves and the person with dementia (PWD). Method: Twenty caregivers and 11 caregiver counselors attended an English or Spanish language focus group ranging from 4 to 6 participants. We conducted a directed content analysis informed by Lorig and Holman's conceptualization of self-management. Results: A complement of six skills (i.e., problem solving, decision making, resource utilization, patient–provider partnership, action planning, and self-tailoring) to achieve one of three tasks (i.e., emotional, medical, and role management) can fully represent Hispanic dementia family caregivers' ability to self-manage health and health care needs. While not prominent in our study, caregivers and caregiver counselors pointed out existing and potential uses of personal consumer technology to schedule reminders and search for resources. Discussion: A broad conceptualization of self-management may be necessary to understand Hispanic dementia family caregiver's ability and needs to address emotional, medical, and role challenges of caregiving. Conclusions: These findings and advances in the use of consumer health information technology support the development of self-management caregiver interventions.
Carers contribute essential support to enable people with dementia to continue living within the community. Admiral Nurses provide specialist dementia support for carers of people with dementia, including offering expert emotional support and guidance, and work to join up different parts of the health and social care system to address needs in a co-ordinated way. The cost-effectiveness of this service is not clear. We undertook a feasibility study to explore related outcomes and costs for these carers. A cross-sectional, clustered survey was undertaken in England in 2017, in areas with and without Admiral Nursing (AN). The survey questionnaire included questions on the characteristics of the carers and the person with dementia, outcomes (care-related quality of life [CRQoL], self-efficacy and subjective well-being), use of health and social care services, out-of-pocket costs and time spent on informal care. We used different econometric techniques to compare the outcomes and the costs of the carers with and without AN services: linear regression, propensity score matching and instrumental variables analysis. These techniques allowed us to control for differences in observed and unobserved characteristics between the two groups of carers which determined outcomes and costs. We concluded that AN services might have a positive effect on carers' CRQoL, self-efficacy and subjective well-being. Furthermore, we found little difference in costs between carers using AN and those using usual care, or in the costs of the people with dementia they care for. Our findings provided an initial indication as to whether AN services could be good value for money. The key limitation of the study was the difficulty in controlling for unobserved characteristics because of the cross-sectional nature of our observational data. To diminish this limitation, our survey could be used in future studies following carers with and without AN services over time.
Aims: To explore and understand carer participation in support groups when caring for a person with dementia who lives at home Design: Focused ethnographic design.; Methods: Participant observations and semi-structured interviews were conducted from January - December 2015. The data were collected from four support groups in the Danish primary health care system. Interviews were conducted with 25 carers. An inductive content analysis of the data was performed.; Results: Three themes were identified: emotional well-being due to peer and family support, emotional sense of togetherness despite hardships and emotional and ethical considerations in caregiving.; Conclusion: Support group participation with positive peer interaction increases carer self-esteem and feelings of togetherness, as well as an awareness of maintaining the care receiver's dignity and prevention of conflicts with families, resulting in an improvement in carer well-being, leading to increased motivation to continue caring. Carers who hid their group participation face a potential conflict with the care receiver.
For a growing number of persons with dementia (PWDs), advance care planning (ACP) can help families make important end-of-life (EOL) care decisions that reflect PWDs' values and preferences. The current exploratory study aimed to understand advance directive planning and decision making among PWDs and caregivers. A survey was conducted with a convenience sample of 47 ethnically diverse PWD caregivers recruited from rural health care facilities in Southwest Texas. Sixty-eight percent of PWDs and caregivers were Hispanic. The majority of PWDs had completed an advance directive (60%) and preferred equally shared decision making between family (including the PWD) and physicians (57%). Under a hypothetical EOL scenario for PWDs, caregivers chose comfort (40%) and palliative care treatment (55%) more than other goals and treatment options. In this scenario, Hispanic PWDs were less likely than non-Hispanic White counterparts to complete an advance directive (48% vs. 81%, p < 0.05) and to choose only pain and symptom management (46% vs. 81%, p < 0.05). Although the overall ACP rates among rural PWDs may be comparable to those for the general PWD population, ethnic differences exist. More culturally competent education efforts are needed to promote ACP among PWDs in culturally diverse rural communities.
Positive impact of care networks of home-dwelling elderly people may be based on several network mechanisms: navigation to resources, negotiation between participants and contagion of behaviours. Little is known about actions of participants-elderly people, informal caregivers or formal care providers-to activate such mechanisms and generate support. Aim of this study was to identify actions in relation to these network mechanisms. A cross-sectional qualitative study of 48 interviews with home-dwelling elderly people, informal caregivers and formal care providers in the eastern parts of the Netherlands was conducted between March and September 2016. A framework analysis on network mechanisms categorised actions. Actions were reviewed by network party and compared between networks to explore relations between actions and networks. Results showed that participants navigated through existing relations to seek support. Actions on negotiation were aimed at ameliorating existing relations. Few examples and no actions on contagion of behaviours were found. Actions seemed driven by incidents and existing relations. Elderly people rarely initiated actions, informal caregivers felt hampered by their position in the network. Consistent patterns of relations between actions and network characteristics did not emerge. We concluded that the full potential of network-based support of elderly people is probably underused. Particularly promising seem: navigating the neighbourhood for new informal care, using opposite opinions as a catalyst for change and bringing quality of life and dilemma's into dialogue in the network.
Informal dementia caregivers are thought to experience high levels of depression and burden, which can contribute to worse cognitive functioning. However, poorer cognitive functioning in caregivers is not always found. The current study explored whether caregivers perform better, worse, or similar to non-caregivers on tasks for executive functioning and memory. Whether sociodemographic and psychosocial characteristics are associated with caregivers' performance was also assessed. One hundred forty-five caregivers completed the Letter Fluency and Category Fluency, the Logical Memory test from the WMS-III, and five questionnaires assessing psychological characteristics. Standardized -scores (based on age, education, and sex) were calculated using data from a matched control group (187 non-caregivers). One sample -tests were executed to examine if the caregivers' standardized mean -score significantly deviated from the population mean of = 0. The -scores were used as dependent variables in multivariable regression analyses. The caregivers performed significantly better on Logical Memory - Immediate Recall than non-caregivers ( = 2.92, = .004). The obtained -scores on the other tasks did not deviate significantly from 0. Male sex and social reliance predicted higher scores on Category Fluency, but the -test was non-significant, and the explained variance was low (adjusted = .068). We found no evidence for poorer cognitive performance among informal caregivers compared to non-caregivers. Our results suggest that caregiving for a loved one with dementia does not impair the caregivers' episodic memory or executive functioning when measured cross-sectionally.
High resilience is associated with improved carer outcomes. Both individual factors and the availability of social support have been linked with resilience. This study was conducted to compare socio-demographic characteristics and the availability of social support for carers with low and high resilient coping, and identify if any domain of social support predicted high resilient coping in informal carers of people with dementia. The participants in this cross sectional survey included 108 informal carers of people with dementia. Findings showed the availability of emotional/informational support was most likely to predict resilient coping and tangible support the least likely. However, when controlling for all covariates, only gender predicted high resilient coping, individual social support domains were no longer significant. Therefore, as no single domain of social support has a significantly greater influence on resilient coping, service providers should enable carers to build a wide, multi-function support network.
Background: Family members absorb much of the care of dementia patients. The burden of care substantially impacts caregivers' health, further straining our healthcare system. By 2050, the incidence of Alzheimer's disease will more than double, increasing the numbers of family caregivers proportionally. Interventions that reduce their burden are needed to preserve their health as well as the viability of the healthcare system.; Objective: This paper reports on the development and feasibility testing of a computer-based system intended to improve the lives of caregivers. D-CHESS (Dementia-Comprehensive Health Enhancement Support System) allows users to obtain information, communicate with other caregivers, get help with care decisions, and share information with experts.; Method: Thirty-one caregivers were randomly assigned to an intervention group receiving D-CHESS for 6 months or to a control group receiving a caregiving book. Surveys at 0, 2, 4, and 6 months evaluated caregiver burden, family conflict, satisfaction with decisions, social support, loneliness, anxiety, depression, and coping competence.; Results: Survey findings suggest D-CHESS participants may perform better on measures of social support, anxiety, loneliness, and coping competence; the groups were equivalent on caregiver burden, decision satisfaction, and depression, and the control group reported less family conflict than the intervention. D-CHESS use data suggested enhancements to system design and content to increase awareness and use of various features.; Conclusion: This study suggests that D-CHESS has potential to positively impact family caregivers and that the system merits further development and investigation with a full-scale clinical trial.
Background: Smart Health technologies (s-Health technologies) are being developed to support people with dementia (PwD) and their informal caregivers at home, to improve care and reduce the levels of burden and stress they experience. However, although s-Health technologies have the potential to facilitate this, the factors influencing a successful implementation in this population are still unknown. Objective: The aim of this study was to review existing literature to explore the factors influencing PwD and their informal caregivers’ adoption of s-Health technologies for home care. Methods: Following the Arksey and O’Malley methodology, this study is a scoping review providing a narrative description of the scientific literature on factors influencing s-Health technology adoption for PwD and their informal caregivers. A search was conducted using PubMed, the Cochrane library, the IEEE library, and Scopus. Publications screening was conducted by 2 researchers based on inclusion criteria, and full-text analysis was then conducted by 1 researcher. The included articles were thematically analyzed by 2 researchers to gain an insight into factors influencing adoption that PwD and their informal caregivers have to encounter when using s-Health technologies. Relevant information was identified and coded. Codes were later discussed between the researchers for developing and modifying them and for achieving a consensus, and the researchers organized the codes into broader themes. Results: Emerging themes were built in a way that said something specific and meaningful about the research question, creating a list of factors influencing the adoption of s-Health technologies for PwD and their informal caregivers, including attitudinal aspects, ethical issues, technology-related challenges, condition-related challenges, and identified gaps. A design framework was created as a guide for future research and innovation in the area of s-Health technologies for PwD and their informal caregivers: DemDesCon for s-Health Technologies. DemDesCon for s-Health Technologies addresses 4 domains to consider for the design and development of s-Health technologies for this population: cognitive decline domain, physical decline domain, social domain, and development domain. Conclusions: Although s-Health technologies have been used in health care scenarios, more work is needed for them to fully achieve their potential for use in dementia care. Researchers, businesses, and public governments need to collaborate to design and implement effective technology solutions for PwD and their informal caregivers, but the lack of clear design guidelines seems to be slowing the process. We believe that the DemDesCon framework will provide them with the guidance and assistance needed for creating meaningful devices for PwD home care and informal caregivers, filling a much-needed space in the present knowledge gap.
Background: Informal, often family carers play a vital role in supporting people living with dementia in the community. With ageing populations, the part played by these carers is increasing making it important that we understand what motivates them to take on the role. This systematic review aimed to identify and synthesise qualitative literature describing what motivates people to care for someone with dementia.; Methods: The review followed the Centre for Reviews and Dissemination (CRD) guidelines. Six electronic databases were searched from their first records until August 2018. Synthesis was narrative.; Results: Twenty-six studies fitting the inclusion criteria were identified. Carers described multiple, inter-related motives for caring for someone with dementia. Caring was generally described as a reflection of long-standing family relationships between carers and the care recipients, whether by blood or marriage. Commonly offered motivations included love, reciprocity, filial piety, duty and obligation.; Conclusions: Perhaps the most striking finding was the similarity in these motivations irrespective of gender or relationship with the care recipient. Family relationship and shared history underlay most motivations. Future research should include more longitudinal studies incorporating within study comparisons between different demographic groups to give greater confidence in identifying similarities and differences between demographic groups.
Background: A Dementia Health Literacy Project was undertaken in the north coast region of NSW, Australia, after it was identified as having a high prevalence of dementia. A Dementia Support Kit was produced with service user engagement to provide useful information to people with dementia and their families. Objective: To evaluate the Dementia Health Literacy Project using a realist evaluation framework. Setting and participants: The setting was the region of the north coast of New South Wales. Eight people diagnosed with dementia and their carers, 13 members of social groups of older people in the local area, and 22 local GPs and other health‐care and service providers participated in this study. Results: Two context‐mechanism‐outcome configurations were identified: (a) co‐design workshops where the stakeholders' opinions were equally valued (context) led service users to feel listened to and prompted them to provide feedback (mechanism) to develop a practical resource that they would use (outcome); and (b) use of health professionals to distribute the resources (context) that they consider useful and valuable (mechanism) resulted in the target audience receiving the resources (outcome). Discussion and conclusions: The Dementia Health Literacy Project produced a Dementia Support Kit that is likely to provide locally relevant and useful information for people with dementia and their carers. The results highlight the value of the co‐design approach in producing and disseminating dementia health literacy resources. Further evaluation is required to confirm the impact of the Kit over time on service users' behaviour and consequently on their health outcomes.
There are over five million people in the United States living with dementia. Most live at home and are cared for by family. These family caregivers often assume care responsibilities without education about the disease, skills training, or support, and in turn become at risk for depression, burden, and adverse health outcomes when compared to non-dementia caregivers. Despite over 200 caregiver interventions with proven benefits, many caregivers lack access to these programs. One approach to enhance access is to embed evidence-based caregiver support programs in existing community-based services for people with dementia such as adult day services (ADS). Here we describe the protocol for an embedded pragmatic trial designed to augment standard ADS known as ADS Plus. ADS Plus provides family caregivers with support via education, referrals, and problem solving techniques over 12 months, and is delivered on-site by existing ADS staff. Embedding a program in ADS requires an understanding of outcomes and implementation processes in that specific context. Thus, we deploy a hybrid design involving a cluster randomized two-group trial to evaluate treatment effects on caregiver wellbeing, ADS utilization, as well as nursing home placement. We describe implementation practices in 30 geographically and racially/ethnically diverse participating sites. Clinical trial registration #: NCT02927821.
Dementia is one of the costliest and most time-consuming diseases among older persons. Although informal caregivers provide the majority of care for persons with dementia, little is known about the self-perceived need for social services of caregivers of persons with dementia within rural areas. This pilot study examined the knowledge, access and intent of the practice-oriented service model of caregivers of persons with dementia in rural communities in the Midwest U.S. After a systematic training, researchers interviewed 11 rural caregivers of persons with dementia (n = 11). Data were analyzed using thematic analysis. Although similarities with other caregivers of persons with dementia were found, important differences suggesting unique issues among these rural caregivers of persons with dementia. Many participants found strength in their community, which often served as a safety net of support. Consistent with existing literature, participants expressed financial concerns, geographic barriers and lack of dementia-specific services when using formal services. The need for more specialized formal services in rural areas to supplement existing informal care networks is discussed. Policies and services based on rural caregivers' unique concerns and challenges and that build upon their existing care networks are recommended.
Background: Dementia presents barriers to the collaboration between individuals and the healthcare system. Caregivers perform multiple functions helping patients with basic and instrumental activities but also communicating and mediating the dyads’ needs within the broader social group. Interventions focusing on caregivers show that caregiver burden can be reduced, improving patient outcomes in a cost‐effective way, but the generalisation of these findings is limited by several factors such as low participation rates of caregivers in studies. There is a global push to increase patient participation in health care, but this can be difficult for patients with dementia. Caregiver participation has arisen as a substitute, but there is a lack of standardised definitions, goals and outcome measurement tools for this participation. Methods: In 2015, the Swedish Association of Local Authorities and Regions commissioned a study on possibilities of increasing caregiver participation within the Swedish Dementia Registry (SveDem). This discussion paper updates and adapts that report, aiming to broadly summarise the caregiving phenomenon in order to provide a backdrop for clinicians seeking to understand the legal, ethical and practical considerations of caregiver participation in dementia. Relevant literature on caregiver participation is presented, and its definition, extent and practical implementation are discussed. Discussion: The Swedish legal framework compels care providers to facilitate patient and caregiver participation in dementia and provides support to caregivers through the local level of government, but further work is needed to clarify and define the extension and form that this participation must take in clinical practice. Advanced directives are one step in extending patient participation to the period of advanced dementia. Conclusion: Little research exists on caregiver participation. There is a need to develop a framework for caregiver and patient participation to determine the extent, type and form that such participation should take in health care, research and quality initiatives pertaining to persons with dementia.
Many people with dementia eventually require residential aged care, frequently preceded by a hospital admission. Family carers often find the process challenging and disempowering, as they are expected to move their family member to residential aged care quickly. This article reports on findings from a small Australian qualitative study focusing on the provision of information, support and resources, and discusses the findings in relation to person-centred care and critical social work. Social workers completed an online survey and participated in focus groups, and carers were interviewed. The research found that carers valued the information, support, and resources provided by social workers and other hospital staff. They needed time to adjust to the dementia diagnosis and wanted a supportive person to talk to about the written information. The social workers wanted an improved approach to the preparation and communication of information, and a more consistent approach to family meetings. There is a need to further develop and articulate the role of hospital social workers in supporting the transition to residential aged care for people with dementia and their family carers. What is valued by family carers is personal support; a team approach from the hospital; up-to-date, concise information; and guidance from a caseworker. Early diagnosis of dementia, more information about the progression of dementia, and advanced care planning would be of assistance.
African American caregivers for persons living with dementia frequently experience emotional strain, burden, social isolation, and depression. One source of support for them when in distress is their church community. However, many African American churches do not have programs to support families and congregants living with dementia. Dementia often restricts persons living with dementia and their caregivers from attending church. Both become increasingly uncomfortable in church settings due to fear of embarrassment, uncertainty about the behavior of the person living with dementia, and shame. Church attendance and religion has been shown to be beneficial for caregivers and elders living with dementia. However, there is little work exploring how involvement in religious practices together (caregivers and persons living with dementia) might enhance the quality of life for these families. This protocol is written to detail the designing and testing of the feasibility and preliminary efficacy of a dementia‐friendly faith village worship service. In the study, we will examine how dementia‐friendly faith village worship services support the well‐being of caregivers and care recipients in three African American churches through observation, interviews, and surveys. A sample of 30 dyads of African American caregivers and persons living with dementia will be asked to attend six modified worship services together over 6 months. In this study, we hope to demonstrate the significant role of churches in the lives of African American family caregivers and persons living with dementia and show that a faith‐based, family‐oriented approach can promote a greater quality of life for African American families living with dementia.
Having a match between a nursing home and the preferences of people with dementia is beneficial for their well-being. It is suggested that innovative types of nursing homes such as small-scale living facilities and green care farms create a better match between their care environment and their residents. However whether this is also reflected into the experiences of informal caregivers is not known. Therefore, this study explores what their positive and negative experiences are with regard to green care farms, other small-scale living facilities, and traditional nursing homes.
Introduction Informal caregivers of persons with dementia have an increased risk of facing social isolation. Online social media interventions might offer a new opportunity to increase access to social support. An online social support platform, ‘Inlife’, was developed and launched in the Netherlands to enhance social support, positive interactions and information sharing in informal support networks. Objective A process evaluation was performed to evaluate the internal and external validity of the Inlife intervention. Methods Implementation, sampling and intervention quality were evaluated by both qualitative and quantitative methods. Analyses were performed using descriptive statistics and inductive content analysis. Analyses were conducted following participants' completion of the intervention after 16 weeks. Results The overall participation rate in the study was 27% (96/351). The Inlife intervention was generally well-received by the primary caregivers. Inlife facilitated empowerment, openness, involvement, and efficient care organization. Still, adherence was not optimal for all Inlife users. Determinants for Inlife use were identified on the level of the Inlife innovation, the users, and the socio-political context. Conclusions Inlife was evaluated as a useful instrument for efficient central care coordination and mutual involvement. This study emphasizes that the personal attitudes of the Inlife users to seek and provide support warrant attention, next to the characteristics of the actual Inlife innovation for optimal intervention uptake. Online and offline support might be integrated to raise awareness of caregiver social support needs and attitudes and provide insight into caregivers' available social capital. Trial registration Dutch trial register NTR6131, Registered on 20 October 2016.
Background and Objectives: Recognizing the important role that dementia-specific adult day centers have in maintaining persons with a neurocognitive disorder in their home, this article examines three critical indicators at the time when people first enroll in such a center: cognitive and functional impairment of the enrollee, and burden reported by their family caregivers. We also considered variations in these 3 indicators by race/ethnicity and by the relationship of caregiver to the new enrollee.; Research Design and Methods: We conducted a secondary analysis of data collected by a nonprofit organization operating 11 dementia-specific adult day centers located on the east coast of Florida. Nursing staff conducted intake interviews with enrollees and their caregivers, and assessed functional status within one month of admission. Instruments included the Zarit Burden Scale and components of the Minimum Data Set: the Brief Interview for Mental Status (BIMS) and 4 measures of functional status.; Results: On average the cognitive scores of newly enrollees were well-within the range indicated for severe impairment, and these levels did not differ by race/ethnicity. Burden reported by caregivers however differed significantly, with Latinx caregivers reporting the greatest burden and African American/Black caregivers reporting the least. Further, while daughters generally reported higher levels of burden than other family caregivers, Black daughters reported the least.; Discussion and Implications: Results suggest a need for greater dissemination efforts about adult day programs to the Latinx community, as well as attention to the disparate burden placed upon differing family relationships of caregivers to enrollees.
Neuropsychiatric symptoms in dementia are associated with greater caregiver burden and desire to institutionalize, though previous work largely examines the cumulative effects of many behavioral symptoms. Sexual disinhibition could be particularly stressful due to stigma attached to these behaviors. Links between care recipient sexual disinhibition, caregiver burden, and caregiver desire to institutionalize were examined by analyzing cross-sectional data from 730 family caregivers recruited online. Caregiver burden, caregiver desire to institutionalize, and neuropsychiatric symptoms, including sexual disinhibition, were assessed via caregiver report. Burden (P < .001) and desire to institutionalize (P = .008) were greater among caregivers who endorsed sexual disinhibition. Sexual disinhibition uniquely predicted desire to institutionalize after accounting for presence (P = .02) and severity (P = .03) of other neuropsychiatric symptoms. A similar pattern was seen for burden (presence P < .04; severity P = .06), and follow-up analyses revealed caregiver burden mediated the relationship between care recipient sexual disinhibition and caregiver desire to institutionalize (presence bias-corrected 95% confidence intervals [BCa 95% CI] [0.003, 0.08], severity BCa 95% CI [0.007, 0.06]). Sexual disinhibition appears to be a particularly difficult neuropsychiatric symptom for the family caregiver, contributing to desire to institutionalize via caregiver burden.
Objectives: Good interaction with family caregivers helps maintain positive identity in people with dementia. However, research in this area is limited. We aimed to systematically review the dyadic experience of dementia caring. Method: We searched on five databases: MedLine, EMBASE, PsycInfo, ASSIA, and CINAHL. Eligible studies employed qualitative or mixed method design, reported the experience of dyads of dementia with no comorbid organic or psychiatric disorders. No restrictions were made on language, year of publication, sex or age of participants. Two independent researchers conducted the quality appraisal of studies. We synthesise data through meta-ethnography and developed a behavioural model to explain dyadic interaction. Results: Seventeen studies were included in the review. The meta-ethnography generated two third-order constructs: Personal orientation and noises. When people with dementia and their carers have dyadic-oriented goals, their behavioural responses may promote positive interaction. When only one partner has dyadic goals, context-related stress may affect the interaction, because of no perceived shared understanding of the situation. Conclusion: Our findings suggest that unequal power distribution within dyads, can cause significant stress, when coping strategies are impaired. We discussed implications for family carers, people with dementia, and health professionals deriving from greater understanding of dyadic dynamics to care.
Most dementia care is provided at home by family members. This caregiving places an additional burden on the family members, which can negatively impact their physical and psychological well-being. The caregivers' burden can also contribute to behavioral problems in the care-recipients. The purpose of this study was to examine the mediating/moderating effects of positive thinking (PT) on the relationship between caregivers' burden (embarrassment/anger, patient's dependency, and self-criticism) and their care-recipients' behavioral problems (memory, depression, and disruption) in a sample of 100 dementia caregivers. Results indicated that caregivers' embarrassment, self-criticism, and perception of patient dependency predicts depression in care-recipients, and these relationships are moderated by PT. Results also indicated that as PT increases, the relationship between embarrassment and disruption goes down as well as does the relationship between self-criticism and depression. The study provided direction for the development of a PT training intervention to help caregivers to combat their burden.
Objective: To examine differences between White and African American caregivers in strain, health, and service use in a population-based sample of informal caregivers for older adults. We also assessed whether relationship type (parent, other family, friend) and dementia care status (yes or no) were moderators of any racial differences. Method: We examined 887 informal caregivers via covariate-adjusted 3 × 2 × 2 factorial ANOVAs. Results: After covariate adjustment, there were few significant racial differences in caregiving strain, health, and service use. Dementia caregivers reported greater strain, and there were three-way interactions among relationship type, dementia care status, and race for physical strain and emotional stress. Discussion: Previous findings suggesting substantial racial differences in caregiver strain, which have primarily come from convenience samples that combined care relationship types, were not replicated. Racial and ethnic differences in caregiving may be context-specific. Historical changes in caregiving should be examined in future research.
Individuals with Alzheimer's disease and related dementias (ADRD) may exhibit behavioral and psychological symptoms of dementia that can increase the strain experienced by their family caregivers. This strain correlates with increased stress and reduced quality of life for the family caregiver and individual with ADRD. More information is needed regarding the ways in which caregivers manage the caregiving experience in their efforts to reduce strain and maintain or improve quality of life. Many individuals, including dementia caregivers, use web blogs as online journals to share their lived experiences. The current study used blogs written by family caregivers of persons with ADRD to explore strategies used to support their care recipients. Using a qualitative thematic analysis, six themes related to the strategies used by caregivers were identified: Modifying the Physical and Personal Environment; Engaging the Person With ADRD; Seeking Outside Assistance; Using Complementary Therapies; Planning and Organization; and Reminiscing and Traditions. The current findings extend our understanding of strategies for caregiving that are used by and acceptable to family caregivers of persons with ADRD. This information can be used to develop or modify nursing-related interventions and services aimed at improving caregiver strain and quality of life. [Journal of Gerontological Nursing, 45(7), 25-35.].
Health and care services for patients may improve or harm the wellbeing of their family carers. Formal consideration of these effects (also known as spillovers) in decision-making is advocated, but, to date, little is known about how they occur. This paper presents the first empirical study to determine the mechanisms by which health and care services affect family carers' wellbeing. The study focused on three major health conditions: dementia, stroke, and mental health. Focus groups and interviews were conducted with 49 purposefully sampled care professionals and family carers in the UK between December 2016 and September 2017. Transcripts were coded and analysed thematically, using descriptive accounts and an explanatory account. The analysis generated six over-arching mechanisms by which health and care services affect family carers' wellbeing, through:
Each mechanism was associated with sub-themes relating to both positive and negative spillovers on the family carers. The six mechanisms can be summarised with the mnemonic ‘IMPACT’. The IMPACT mechanisms may be useful in designing and evaluating services to optimise the wellbeing of carers as well as patients. •First qualitative study to identify mechanisms behind family carer spillovers.•Mechanisms were ‘information’, ‘management’, ‘patient’, ‘alienation’, ‘compliance’, ‘timing’.•Summarised by mnemonic IMPACT and relevant across conditions.•Each mechanism generated positive and negative spillover.
Providing care to persons with Alzheimer's disease poses challenges for spouses and adult children, including experiencing stigmatic beliefs towards themselves—i.e., family stigma. Drawing on the frameworks of ethnicity and stigma and ethnicity and dementia, the current study explored stigmatic experiences among Israeli Arab family caregivers of a person with Alzheimer's disease. Three focus groups with 20 caregivers (adult children and spouses) of persons with Alzheimer's disease were conducted. Data were analyzed using theory-led thematic analysis. Caregivers reported experiencing family stigma in two dimensions: public and affiliate stigma, in both the existence of an attribution process in which cognitive stereotypes elicit negative and positive emotions which in turn provoke behavioral attributions, was evident. Family stigma was found to be a discernible feature of everyday reality among Israeli Arab caregivers of persons with Alzheimer's disease and stress the importance of developing management strategies that are tailored to the socio-cultural characteristics of the caregivers.
Imelda cared for her husband through his journey with young-onset Alzheimer's disease. He was diagnosed at the age of 64 and died aged 68. This article describes many of the challenges that she faced in ensuring that her husband continued to experience purpose and meaning even as the ravages of the disease robbed him of his skills. She focuses on the need for the caregiver and the care professional to respond to the unique way in which the person being cared for engages with his or her world and to co-develop activities that are meaningful to them.
How does society collectively envision what ‘old age’ looks like, and what does this vision mean for how we plan for, support and conceptualise care? This book explores the concepts and practices of care in relation to what Higgs and Gilleard describe as the social imaginary of the fourth age: a collective representation of later life composed of those elements most feared about ‘extreme’ older age, namely, physical and cognitive decline, infirmity, and, ultimately, failure. They begin by outlining how the social imaginary of the fourth age has emerged in contrast to that of a third age of ‘successful aging’, wherein an older individual is imagined to be able to exert autonomy, retain productivity and continue an active lifestyle.
Aim: The present study examined the association between depression of persons with dementia and family caregiver burden, as well as whether the association depended on the level of caregivers' ability to find positives in caregiving.; Methods: Based on the medical records of a local mental health hospital and the statistics of an epidemiological survey, this cross-sectional study included 157 major family caregivers of non-institutionalized dementia patients in the rural sector of Western China's Sichuan Province. They responded to the Cornell Scale for Depression in Dementia, a short version of the Zarit Burden Interview, a subscale of a caregiver meaning scale and demographic questions.; Results: Controlling for the demographic variables of the caregivers, the present study found that dementia patients' depression level was significantly associated with caregiver burden (P < 0.001), and the caregivers' levels of finding positives in caregiving significantly moderated the association (P < 0.05). Furthermore, the positive correlation between dementia patients' depression and caregiver burden was weaker among the family caregivers with a high level of finding positives in caregiving, compared with those with a low level of finding positives in caregiving.; Conclusions: This research suggests the importance of facilitating family caregivers of dementia patients to find positives in caregiving. It provides initial data for the development of dementia caregiver burden interventions that are based on the understanding of the deep meaning of dementia caregiving.
Aims: The aim of this systematic review was to examine the characteristics and the efficacy of dementia caregiving interventions among the Chinese population. Background: In recent years, an increasing number of dementia caregiving interventions have been developed for Chinese older adults living in Asia that aim to reduce caregivers' burden, depression and distress, and enhance quality of life. Little is known, however, on the nature and the efficacy of these interventions. Design: Systematic review with narrative summary. Data sources: We searched four databases for studies published in English between 1 January 1994–30 December 2017. Nineteen studies reported in 23 articles were included in the final analysis. Review methods: We used a set of criteria from the Cochrane Collaboration tool to assess for the risk of bias across studies. Results: We found that interventions varied in length, frequency, approach, and content, making comparisons across studies challenging. Caregivers' burden, depression, and distress were improved among most included studies. All studies that examined quality of life of caregivers (N = 6) showed improvement. Most of the interventions showed beneficial effects on care recipients' behavioural symptoms, agitation, and depression; cognitive function, however, failed to improve. Conclusion: Although the review found mixed results on intervention outcomes, the majority of interventions showed a potential to improve the health and well‐being of dementia caregivers and care recipients. This review provides suggestions for future dementia caregiving research in the Chinese population, such as inclusion of relevant theoretical frameworks and more rigorous research designs
Objectives: The expected rise in the number of persons with dementia is accompanied by an increasing interest in understanding and reducing the stigmatic beliefs experienced by family caregivers of persons with the disease. While researchers have recently distinguished between family caregivers' perceptions of public stereotypes (i.e., courtesy stigma) and the internalization of these perceptions (i.e., affiliate stigma), no study has yet assessed the characteristics of dementia caregivers who internalize courtesy stigma and how they do so. The aim of this study was to examine the characteristics of family caregivers of persons with dementia who internalize courtesy stigma, and to investigate this internalization process.; Method: Structured face-to-face interviews were conducted with 175 Israeli Arab family caregivers (87.4% female; 71.4% adult children; mean age = 54.28) for persons with Alzheimer's disease.; Results: Overall, half of the participants reported experiencing affiliate stigma as a result of taking care of a relative with dementia. Regression analyses showed that lower educational level, increased courtesy stigma and lower levels of social support were the main predictors of affiliate stigma. Social support partially mediated the association between courtesy and affiliate stigma.; Conclusion: Our findings provide important insights for the conceptual understanding and the development of interventions to reduce stigma among family caregivers of persons with dementia.;
Background: Caregivers of a family member with a chronic disability or illness such as dementia are at increased risk for chronic disease. There are many factors that contribute to dementia caregiver vulnerability and these factors can be challenging to assess in clinical settings. Self-rated health (SRH) is an independent measure of survival and physical health in the elderly. As an inclusive measure of health, SRH has been proposed as a reliable way to assess a patient's general health in primary care. Therefore, we sought to identify determinants of poor/fair SRH versus categories of at least good SRH in informal caregivers.; Methods: In a cross-sectional study, we examined 134 elderly (≥55 years) providing in-home care for a spouse with dementia who rated their own health with a single-item question: "In general, would you say your health is excellent, very good, good, fair or poor?". In a multivariable model, we compared caregivers with poor/fair SRH to those with good, very good, or excellent SRH on demographics, health characteristics (health behaviors, physical health indicators, psychosocial factors) and caregiving-specific stress (a composite index/total of four caregiving-specific stressors: years of caregiving, dementia severity, care recipient functional impairment and perceived caregiver burden).; Results: Compared with caregivers who rated their own health as either good (31.3%), very good (38.8%) or excellent (14.2%), caregivers with poor/fair SRH (15.7%) were more likely to have lower physical function and total greater caregiving-specific stress. More years of caregiving, severe dementia and care recipient functional impairment, but not perceived caregiver burden, were also more likely among caregivers with poor/fair SRH. Additionally, high negative affect and low positive affect were more likely in caregivers with poor/fair vs. good or excellent and very good or excellent SRH, respectively.; Conclusions: Caregivers with poor/fair SRH were characterized by higher levels of medical comorbidity, low physical function, high negative, but low positive affect and longer duration of caregiving, as well as more severe dementia and greater functional impairment of the care recipient. These findings suggest that caregivers need to be more closely evaluated and targeted for preventive interventions in clinical practice.; Trial Registration: ClinicalTrials.gov registration number: NCT02317523 .
Background: Neuropsychiatric symptoms (NPI) of dementia are important determinants of caregiver burden, while caregiver coping styles and competences can relieve burden. Caregivers differ in coping with the demands made on them and in experienced burden. What changes in caregivers explain recovery from burden, and which caregiver characteristics predict recovery from burden over time, and does treatment make a difference?Methods: This study into recovery from burden was a secondary analysis of data collected in a formerly conducted randomized controlled trial (RCT) on the integrated reactivation and rehabilitation (IRR) programme in a psychiatric-skilled nursing home, compared to usual care (UC; i.e. day care, assisted living arrangements, and nursing home wards). For this secondary analysis, longitudinal data on persons with dementia and caregivers were used from baseline (T1), end of treatment (T2), and at nine months (T3). Results: Caregivers with an improved sense of competence (SCS) who care for persons with dementia with a decreased severity of NPI have the highest chance of recovering from burden (CSI). Caregivers with a tendency to feel involved with others and sympathize with others (affiliation, ICL-R) have a slightly lower probability of improvement with respect to their sense of competence in the short term. The number of improved caregivers was higher in IRR than UC. Conclusion: Recovery depends on both an improved sense of competence and a decreased severity of NPI. Combined interventions that address both NPI and focus on enhancing caregiver's sense of competence have added value when it comes to decreasing caregiver burden.
In England there has been substantial policy development and an academic drive to promote the goal of 'living well' for people with dementia and their family members. This article critically evaluates the feasibility of this intention, with reference to the experience of those caring for people with the condition. Qualitative data are utilised from a study which explored how couples negotiate relationships and care. The focus of this paper is the perspectives of spousal carers and the challenges they encounter within their caring role. Views were obtained via semi-structured joint interviews where the carer participated alongside the person with dementia. The extent to which living well with dementia is a credible aspiration for carers is examined via three themes: identity subsumed under care responsibilities; the couple as an isolated family unit; and barriers to professional support. The findings highlight that experience of caring is highly complex and fraught with multiple practical, emotional and moral pressures. It is asserted that research into dementia and care relationships must avoid a zero sum situation, prompted by living well discourses, where attempts to bolster the position of people with dementia compound the marginalisation and stigmatisation of informal carers
Purpose Caring for patients with dementia is a challenging issue entailing heavy responsibility. Many interventions for caregivers have been developed, but their effectiveness is not clear. This study aimed to examine how, why, and under what circumstances interventions for dementia caregivers affected their burden of caring. Methods Authors used a realist review approach to explore the evidence for how different interventions reduce the burden of dementia caregivers. We completed the literature review about the burden of dementia caregivers and extracted the theoretical concepts to explain context-mechanism-outcome configuration why an intervention may be effective in some situations and not others. Six databases were searched for experimental or quasi-experimental studies conducted from 2008 to 2017. Of 1,225 screened studies, 10 studies were eligible for inclusion. Results None of the studies included all the derived contexts while explaining in detail the mechanism of the intervention effectiveness. Among contexts, the variable of other family members requiring care was not included in all studies. Among the analyzed studies, no studies have applied repeated intervention. Most studies included only some variables of context and mechanism, and these variables did not directly explain the effectiveness of intervention. The effect of outcome variables was significant for each study, and the effects of research intervention and national services could not be separately described. Conclusion Authors conclude that Korean culture's emphasis on relationships with others increases the burden of care. In context, Confucian norms and traditional femininity of Korea were reflected in the core. It is necessary to check the homogeneity of participants and the design of intervention to verify the effectiveness of the outcome variable of psychological burden.
Aims and objectives: To explore the impact of early‐stage dementia on care recipient/carer dyads' confidence or belief in their capacity to manage the behavioural and functional changes associated with dementia and to access appropriate support networks. Background: Living with dementia has predominantly been explored from the carer perspective and focused on the stress and burden of supporting a person with dementia. There has been a shift towards a more positive discourse to accommodate the role of self‐efficacy in supporting self‐management by people living with dementia. However, little has been reported on the dyadic experience of self‐efficacy in managing life with dementia. Design: A qualitative study using an interpretive descriptive approach. Semi‐structured interviews were conducted with 13 dyads in the early stages of dementia. The collected data underwent a process of thematic analysis. The study followed the COnsolidated criteria for REporting Qualitative research (COREQ) checklist. Results: Dyadic adjustment to dementia was dynamic, involving shifts between loss and adaptation. Threats to self‐efficacy, declining autonomy and stigma, were significant causes of concern for both members of the dyad. Dyadic self‐efficacy was demonstrated through recognition of and adaptation to dementia‐related changes and development of coping strategies to integrate impairment into everyday life. Conclusions: Solution‐focused approaches that improve knowledge and skills enable the dyad to adjust. The considerable impact of stigma on self‐efficacy indicates that supportive disclosure strategies developed in mental health may also have a role to play in dementia interventions. Relevance to clinical practice: Nurses play a significant role in advising and supporting care recipient/carer dyads with dementia, and a better understanding of the dyadic perspective provides them with essential information to support self‐management. A proactive approach including information and support, offered at the beginning of the condition/care trajectory, may have the potential to delay progression into more dependent stages.
The authors assessed the frequency with which family caregivers of older veterans with cognitive impairment sought guidance for new physical or behavioral symptoms and described the characteristics of such events, including the diagnoses and advice given. Background: When older adults with cognitive impairment develop new physical or behavioral symptoms, their family caregivers face a difficult decision: whether and when to seek professional medical care. Most family caregivers lack formal training in assessment and may have difficulty making such decisions. The Veterans Health Administration's home-based primary care (HBPC) program, which is widely available, offers community-dwelling frail veterans and their family caregivers guidance, with the goal of reducing hospitalization and institutionalization in long-term care facilities. Objective: This study sought to assess the frequency with which family caregivers of cognitively impaired older adults sought prehospital guidance from health care professionals when that resource was available to them, and to describe the characteristics of such events. Methods: This study used a retrospective chart review of patients who were enrolled in the Orlando Veterans Affairs Medical Center HBPC program for at least one month between October 1, 2013, and September 30, 2014; had a diagnosis indicative of cognitive impairment (Alzheimer's disease, vascular dementia, or mild cognitive impairment); had a dedicated family caregiver; and were not enrolled in hospice care. Data were collected from data collection templates and nurses' narrative notes. Univariate descriptive analyses were conducted regarding the type of staff contacted by family caregivers, the presenting diagnoses, the guidance offered by staff, and the number of unplanned acute care encounters. Results: Among the 215 patients studied, there were 254 unplanned acute care encounters (including ED visits followed by discharge to home and ED visits resulting in hospital admission). Family caregivers sought guidance from a health care professional 22% of the time before such an encounter. The presenting clinical issues were most often new problems (43%) that included falls, feeding tube problems, fever, new pain, rash or other skin problems, and unexplained edema. Overall, 25% of all unplanned acute care encounters were for reasons considered potentially avoidable. About half of the patients who were subsequently hospitalized had symptoms of delirium, indicating that their illness had significantly advanced before presentation. Conclusions: It's important for health care professionals to ensure that family caregivers of cognitively impaired older adults can access professional guidance readily when facing decisions about a loved one's care, especially when there is an acute onset of new symptoms. Teaching caregivers how to recognize such symptoms early in order to prevent exacerbations of chronic illness and subsequent hospitalization should be a high priority. Our findings underscore the need to do so, so that caregivers can best use the resources that HBPC programs have (or ought to have) in place, in particular 24/7 guidance and decision assistance.
Background: Family caregivers of people living with dementia can experience feelings of burden and stress but the concept of sense of coherence has been identified as an important protective trait against the negative impact of caregiving. Despite this, there has been no psychometric evaluation of the Sense of Coherence scale-13 with this population. Therefore, a psychometric evaluation was conducted using a mixed-methods approach.; Method: Five hundred and eighty-three caregivers of people living with dementia participated in the study. We examined the feasibility, internal consistency, construct validity, floor and ceiling effects, concurrent validity and face validity of the Sense of Coherence scale-13.; Results: The Sense of Coherence scale-13 demonstrated adequate internal consistency. Sense of coherence was positively related to resilience, sense of competence and health related quality of life, demonstrating good concurrent validity. However, the face validity of the scale was assessed as poor.; Conclusion: The sense of coherence scale performed well under psychometric evaluation however guidance for caregivers should be examined and revised to reflect feedback from caregivers who completed this study, which could lead to improved face validity for this scale.; Trial Registration Number: ISRCTN10748953 . Registered 18th September 2014.
Providing care for people with dementia is difficult when resistive behaviors displayed by people impede caregiving efforts.; Purpose: To examined the frequency of resistive behaviors during informal caregiver-assisted activities of daily living and the impact of these occurrences.; Design: A cross sectional design was used to recruit 17 caregivers from Alzheimer's support group meetings in 2010.; Method: Self-report surveys were used to obtain participants' report of resistive behaviors.; Findings: A positive correlation was found between caregivers reported frequency of bathing behaviors and their reported upset with dressing behaviors. Gender differences emerged in caregiver reported frequencies of the resistive behaviors. Caregivers reported behaviors occurring between two and six times per week but rated the not frequent behaviors as somewhat to very upsetting when they occurred.; Conclusions: When informal caregivers provide assisted care, resistive behaviors occur. Future research is needed to identify interventions to help caregivers manage their upset when resistiveness occurs.
Background and Objectives: While there are qualitative studies examining the delirium-related experiences of patients, family caregivers, and nurses separately, little is known about common aspects of delirium burden among all three groups. We describe common delirium burdens from the perspectives of patients, family caregivers, and nurses.; Research Design and Methods: We conducted semistructured qualitative interviews about delirium burden with 18 patients who had recently experienced a delirium episode, with 16 family caregivers, and with 15 nurses who routinely cared for patients with delirium. We recruited participants from a large, urban teaching hospital in Boston, Massachusetts. Interviews were recorded and transcribed. We used interpretive description as the approach to data analysis.; Results: We identified three common burden themes of the delirium experience: Symptom Burden (Disorientation, Hallucinations/Delusions, Impaired Communication, Memory Problems, Personality Changes, Sleep Disturbances); Emotional Burden (Anger/Frustration, Emotional Distress, Fear, Guilt, Helplessness); and Situational Burden (Loss of Control, Lack of Attention, Lack of Knowledge, Lack of Resources, Safety Concerns, Unpredictability, Unpreparedness). These burdens arise from different sources among patients, family caregivers, and nurses, with markedly differing perspectives on the burden experience.; Discussion and Implications: Our findings advance the understanding of common burdens of the delirium experience for all groups and offer structure for instrument development and distinct interventions to address the burden of delirium as an individual or group experience. Our work reinforces that no one group experiences delirium in isolation. Delirium is a shared experience that will respond best to systemwide approaches to reduce associated burden.
Aim: The present study aimed to examine the associations among behavioral and psychological symptoms of dementia (BPSD) of persons with dementia (PWD), care burden and family‐to‐work conflict (FWC) of employed family caregivers. Method: A cross‐sectional study was carried out with employed adult daughter or son (or in‐law) caregivers for PWD from two rural cities in Japan. FWC, care burden and the degree of BPSD were evaluated by the Survey Work‐Home Interaction‐NijmeGen, Zarit Burden Scale‐Short Version and Dementia Behavior Disturbance Scale, respectively. Of the 200 questionnaires distributed, 130 were returned. A total of 53 respondents were not employed, and seven questionnaires had missing data for demographic variables, Survey Work‐Home Interaction‐NijmeGen, Zarit Burden Scale‐Short Version or Dementia Behavior Disturbance Scale. Thus, complete data from 70 respondents were analyzed through structural equation modeling. Results: The mean age of employed family caregivers was 56 years, and 34 (48.5%) were men. The mean age of PWD was 84 years, and there were 68 (68.6%) men. The path model with a good fit was shown (root mean square error of approximation 0.136, comparative fit index 0.960 and goodness of fit index 0.965). The path model showed that BPSD affected FWC, and that the association was partially mediated by care burden. Conclusions: The results show that a decrease in not only care burden, but also BPSD, of PWD is important for employed family caregivers to reduce their FWC and maintain their work–life balance.
Background: Dementia is prevalent among older adults and frequently causes dependence on family caregivers. Caregivers may experience a form of stigmatization called affiliate stigma that negatively affects their mental health. The current study sought to establish the psychometric properties of a tool to measure affiliate stigma among Iranian caregivers. Methods: Overall, 541 caregivers of older people with dementia were included in this cross sectional study. Several measures were used to assess the psychometric properties of the Affiliate Stigma Scale (ASS) including the Zarit Burden Interview (ZBI), Hospital Anxiety and Depression Scale (HADS), Short Form 12 (SF-12), Rosenberg Self-Esteem Scale (RSES), and Multidimensional Scale of Perceived Social Support (MSPSS). Convergent and discriminate validity were examined.Exploratory and confirmatory factor analyses were utilized to assess the factor structure of the Ass and a Rasch model was used to evaluate the measurement functioning of the scale. Results: Factor loadings ranged from 0.69 to 0.83 and test-retest reliability from 0.72 to 0.89.Item difficulty ranged widely from -0.66 to 0.89. No considerable differential item functioning (DIF) was found across gender. Confirmatory factor analysis confirmed the three cognitive,effective, and behavioral dimensions of the scale (comparative fit index [CFI]=0.931 to 0.995,root mean square error of approximation [RMSEA]=0.046 to 0.068). Internal consistency was acceptable (Cronbach's α: 0.88 to 0.94). Significant and positive relationships were found between affiliate stigma and depression, anxiety, and care giving burden (β =0.35 to 0.46). Conclusion: The ASS is a psychometrically valid measure for assessing affiliate stigma in Iranian caregivers of people with dementia. Application of this tool among other caregivers, language sand cultures deserves further study.
Objective: The aim of this paper is to study the opportunity costs (OC) that are involved in being a caregiver and to compare them with the direct costs assumed by the State and the families. We evaluate direct cost (those that imply a payment-out-of-pocket) and indirect cost (those that imply a dedication in time). We hypothesized that costs increase with the severity of the dementia, with the educational level and active occupational situation of caregiver. They are greater if the caregiver is male, but if the patient and caregiver cohabit they are reduced.; Method: 778 surveys were analyzed. Data was collected using a questionnaire specifically designed for the purpose, with the collaboration of Alzheimer's Diseases Associations in Andalusia (Spain). For the indirect cost, we used the reveal preferences method. For the comparison between groups an ANOVA and a MANOVA was done.; Results: The hypotheses were confirmed. The OC exponentially increases with severity. More than 55% of costs are assumed by families. Occupied people have higher educational level and incomes and contract more external support. Costs are significantly higher for male caregivers. Cohabiting reduces all kinds of costs.; Conclusions: The relationship between educational level and employment situation lead to think that if these variables are greater more people will seek professional support. Cultural reasons still maintain women as main caregivers for all educational levels. The existence of these informal caregivers as the main care providers is a saving for the State, and a brake for the development of professional supply.
Purpose: To know the health perceived by the family caregivers of Alzheimer's disease, according to the relationship of kinship and the duration of the care in mild‐to‐moderate stage of dementia. Design and Methods: Cross‐sectional descriptive study in 255 caregivers. The instruments used were an ad hoc questionnaire and the Goldberg General Health Questionnaire (GHQ‐28). Findings: The presence of acute and chronic mental pathology has been observed. Specifically in the spouses and children, severe depression and social dysfunction, and in periods of care between 2 and 5 years, mainly anxiety and insomnia have been observed. Practice Implications: The relationship of kinship and the duration of care must be taken into account in the planning of specific interventions in these caregivers.
Dementia is a neurocognitive disorder that implies a risk factor of maltreatment by family caregivers. In this study, we analyzed both informal caregiver's perceptions of maltreatment and aspects of the caregiver and caregiving behavior that may be associated with maltreatment. We conducted five focus groups (FGs) in three Spanish cities: Segovia, Soria and León. The themes that were identified were related to two levels of maltreatment: (a) relational and (b) institutional. At the relational level, we observed the justification of maltreatment of Older Adults with Dementia (OAswD) by family caregivers during the occurrence of behavioral symptoms. At the institutional level, we noted that lack of support from the government was considered a type of maltreatment. These themes suggest that policy issues related to healthcare should be considered.
Objectives: This study aims to explore the subjective lived experience of informal caregivers supporting an individual with dementia.; Design: This study uses the interpretive phenomenological approach utilizing the method of photo-elicitation and in-depth semi-structured interviews.; Methods: Six individuals were given a disposable camera to capture photographs which they felt illustrated their own lived experiences of being a caregiver of an individual living with dementia. Photographs were printed and used to form discussion within an in-depth semi-structured interview. The photographs provided an innovative way of capturing the lived experiences of formal dementia caregivers and allowed the interview data to be grounded in their daily living, centring around their own lived experiences.; Results: Three themes emerged from data analysis: 'conceptualising the role of informal caregiver', 'support for the informal caregiver', and 'the caregivers own needs'.; Conclusions: Findings demonstrated the complexity of the relationship between the caregiver and the person living with dementia, and the shift in this relationship specifically due to the role of carer, with notable differences between spousal caregivers and adult-child caregivers. The importance of social, emotional, and practical support for caregivers was highlighted, as well as significance of the caregiver's individual needs. Statement of contribution What is already known on this subject? Informal caregivers of individuals living with dementia cover much of the associated health care costs. Informal caregiving of individuals living with dementia can lead to negative health outcomes of the carer. Health outcomes of informal caregivers living with dementia are grounded in culture and are influenced by multiple factors. What does this study add? The complexity of the transition from family member to informal caregiver has both a physical and emotional impact on caregivers. The transition, and experiences of informal caregiving, is dependent on the relationship to the individual living with dementia. Caregiver support and recognizing the caregiver's individual needs were imperative to caregiver well-being.
Background: Most of patients with dementia are cared for by family members. Caring for people with dementia is challenging; approximately 30-55% of caregivers suffered from anxiety or depressive symptoms. A range of studies have shown that psychosocial interventions are effective and can improve caregivers' quality of life, reduce their care burden, and ease their anxiety or depressive symptoms. However, information on the acceptability of these interventions, despite being crucial, is under-reported.; Methods: Systematic searches of databases were conducted for literature published on EMBASE, PubMed, The Cochrane Library, Web of Science, and PsycARTICLES until August 2017 and the searches were updated on June 2018. The selection criteria included primary studies with data about the acceptability of psychosocial interventions for informal caregivers and publications written in English. Two authors independently selected studies, extracted study characteristics and data, assessed the methodological quality of the included studies by using the Effective Public Health Practice Project (EPHPP) Quality Assessment Tool and Critical Appraisal Skills Programme (CASP) Qualitative Research Checklist, and conducted a narrative synthesis of quantitative and qualitative data.; Results: A total of 10,610 abstracts were identified through systematic searches. Based on screening titles and abstracts, 207 papers were identified that met the criteria for full paper review, with 42 papers from 13 different countries meeting the inclusion criteria. We found high- and moderate-quality evidence showing psychosocial interventions were acceptable, with important benefits for caregivers. Facilitators of acceptability included caregivers' need for intervention, appropriate content and organization of the intervention, and knowledge and professionalism of the staff. Barriers to acceptability included participants' poor health status and low education levels, caregiving burden, change of intervention implementers, and poor system performance of interventions.; Conclusion: There is preliminary evidence to support the acceptability of psychosocial interventions for dementia caregivers. However, the available supporting evidence is limited, and there is currently no adequate information from these studies indicating that the acceptability has received enough attention from researchers. More well-designed studies assessing psychosocial interventions are needed to give specific statements about acceptability, and the measure of acceptability with psychosocial interventions should be more comprehensive.
Family caregiving is considered a social transition as changes in the health of the care recipient create a process of transition for the caregiver when they are more vulnerable to threats to their own health. Family and friend caregivers take on many responsibilities and experience high levels of burden when caring for community-dwelling older adults living with dementia and multiple chronic conditions. However, little is known about the changes they experience in their caring roles or how they cope with these changes. This qualitative descriptive study was part of a larger mixed methods randomized controlled trial evaluating a web-based caregiver support toolkit. Multiple semi-structured phone interviews were conducted with caregivers of older adults with dementia and multiple chronic conditions. Content analysis was used to generate thematic descriptions. Six themes were generated and grouped into two categories. Significant changes experienced by caregivers are described by the following themes: 'everything falls on you - all of the responsibilities,' 'too many feelings' and 'no time for me.' The themes describing how caregivers coped with these changes include: seeking support, self-caring, and adapting their caregiving approach. Study results indicate that caregivers of older adults with dementia and multiple chronic conditions experienced many changes in their caregiving journey resulting in increasing complexity as they tended to the care recipients' declining health and well-being. These caregivers used several creative strategies to cope with these changes. Health care providers should consider both the caregiver and care recipient as clients in the circle of care, and facilitate their linkage with health and community support services to help address the increasing complexity of care needs.
Purpose: The study aimed to identify factors related to family caregivers' sleep. Design and Methods: The study used a cross‐sectional design with objective and subjective methods to measure sleep in the home setting over a 7‐day period. Findings: Findings indicated that poor sleep quality was found in 91.7% of the caregiver participants. Depression, sleep hygiene, burden, and care‐recipients' sleep were significant predictors of various dimensions of caregivers' sleep. Practice Implications: Our study suggests that sleep quality for family caregivers of individuals with dementia varies considerably from night to night. Understanding the complex interrelationships among caregivers' sleep and other contributing variables is an important first step toward the development of individualized and effective treatment strategies.
Background: There is considerable uncertainty surrounding the medications used to delay the progression of dementia, especially their long-term efficacy and when to withdraw treatment with these agents. Current research regarding the optimal use of antidementia medication is limited, contributing to variability in practice guidelines and in clinicians' prescribing practices. Little is currently known about the experiences encountered by caregivers of people with dementia after antidementia medication is withdrawn. Aim: To investigate the experiences and perspectives of carers and family members when antidementia medications (cholinesterase inhibitors and/or memantine) are stopped, by analysing archived threads and posts of an online discussion forum for people affected by dementia. Methods: Archived discussions from Talking Point, an online discussion forum hosted by the Alzheimer's Society UK, were searched for threads discussing antidementia medication withdrawal and relevant threads were analysed thematically using the Framework method. Participant demographics were not established due to usernames which ensured anonymity. Results: Four key themes emerged: (1) expectations about withdrawal, (2) method of withdrawal, (3) clinical condition on withdrawal, and (4) the effect of withdrawal on caregivers. Conclusions: Online discussion forums such as Talking Point provide dementia carers with an outlet to seek help, offer advice and share experiences with other members. The study findings highlight the complexity surrounding optimising dementia pharmacotherapy and antidementia medication withdrawal, highlighting the need for treatment to be person-centred and highly individualised.
Objectives: We aimed to describe (1) the burden and health-related quality of life (HRQL) of informal caregivers of new patients attending a memory assessment service (MAS), (2) changes in these outcomes over 2 years, and (3) satisfaction with services.; Methods: Informal caregivers of patients attending one of 73 MASs throughout England completed questionnaires at the patient's first appointment, and 6 and 12 months later. Participants from 30 of these MASs were also followed up at 24 months. Questionnaires covered caregivers' sociodemographic characteristics, Zarit Burden Interview, EQ-5D-3L, and satisfaction with services. We used multivariable linear regression to assess relationships between burden, HRQL, and caregiver and patient characteristics.; Results: Of 1020 caregivers at baseline, 569 were followed up at 6 months, 452 at 12 months, and 187 at 24 months. There was a small increase in caregiver burden over 2 years (effect size 0.30 SD). These changes were not associated with most caregiver or patient characteristics, except socio-economic deprivation, which was associated with larger increases in burden at 2 years. Caregivers' HRQL was weakly associated with burden and showed a small reduction over time (0.2 SD). Most caregivers were satisfied with services, but caregivers who were not satisfied with the services they received reported greater increases in burden.; Conclusions: Increases in caregiver burden and reductions in HRQL appear to be small over the first 2 years after attending a MAS. However, the longer term impact on caregivers and those they care for needs investigating, as do strategies to reduce their burden.
The study identified factors associated with depressive symptoms in family caregivers of persons with dementia with Lewy bodies, Alzheimer's disease, or Parkinson's disease dementia. An Internet-based survey generated 606 response sets. Regression analysis indicated that care recipients' memory and behavioral problems, caregivers' self-efficacy, grief, and tangible, emotional, and affectionate support were significantly associated with caregivers' depressive symptoms. Self-efficacy mediated caregiver burden to improve psychological well-being. Social support mediated the association between caregiver grief and psychological well-being. Social workers can provide psychoeducational interventions to help caregivers to manage emotional distress and improve capacity to manage tasks related to the dementia.
Background and Objectives: This paper describes the development of an item pool for a needs-based self-report outcome measure of the impact of caring for a relative, friend or neighbour with dementia on carer quality of life. The aims are to give a detailed account of the steps involved and describe the resulting item pool.; Methods: Seven steps were followed: generation of an initial item set drawing on 42 needs-led interviews with carers; a content and face validity check; assessment of psychometric potential; testing of response formats; pre-testing through cognitive interviews with 22 carers; administration rehearsal with two carers; and final review.; Results: An initial set of 99 items was refined to a pool of 70 to be answered using a binary response format. Items were excluded due to overlap with others, ceiling effects, ambiguity, dependency on function of the person with dementia or two-part phrasing. Items retained covered a breadth of areas of impact of caring and were understandable and acceptable to respondents.; Conclusions: The resulting dementia carer-specific item pool reflects the accounts of a diverse sample of those who provide care for a person with dementia, allowing them to define the nature of the impact on their lives and resulting in a valid, acceptable set of items.
Family carers of people with dementia often describe feelings of guilt, grief and low mood, and are also at increased risk of clinical depression. Through a skilled assessment of a carer’s feelings of guilt, an Admiral Nurse identified specific psychological approaches helpful in relieving this potentially damaging and paralysing phenomenon. Person- and family-centred approaches throughout the assessment process, and addressing the needs of individual family members in expressing their individual emotions and experience to the changes in needs of the person with dementia as they become more complex, are essential to family wellbeing. Identifying and differentiating between guilt, anticipatory grief and depression are essential when planning interventions to support family carers.
[The same article is also published in British Journal of Neuroscience Nursing Vol 14, no. 6 https://doi.org/10.12968/bjnn.2018.14.6.286 ]
Background and Objectives: Family carers often experience difficulties managing their own needs, which can lead to ill health. This study aimed to explore the views of carers and other stakeholders about the factors related to health-promoting self-care behavior in family carers of people with dementia.; Research Design and Methods: This multimethod qualitative study involved three consultation events with multiple stakeholders (n = 46) and four focus groups with carers (n = 27). Anonymous notes were collected from the consultation events. Focus group discussions were tape recorded and transcribed verbatim. Inductive thematic analysis was used to analyze the data.; Results: Two overarching themes were identified and labeled "Services" and "Individual factors." Poor service organization and coordination, lack of respite breaks, lack of continuity of care, poor staff attitudes, as well as difficulty to prioritize own needs, health impact, financial impact, and relationships and feelings were related poorer carer health-promoting self-care behavior. Limited health-promoting self-care often led to situations of crisis, which were related to carers' health issues, need for emergency services, and unanticipated care home placement. Carers require high-quality respite to have more time to themselves, support from better coordinated and compassionate services, and more education and awareness about their own needs.; Discussion and Implications: There are several factors that may limit carers' involvement with health-promoting self-care activities, which may affect their own health, on the care provided to their relatives and on service use. Future research and policy need to consider how to better support cares to manage their own health issues.
Older family carers of people with dementia represent an increasing but overlooked population of family carers. This research aimed to explore how these individuals make sense of their own quality of life and to identify the factors that enhance or compromise this. Four focus groups were conducted in 2014 with 19 older family carers in community-based support groups in Nottinghamshire, United Kingdom. Data were transcribed verbatim and analysed using Interpretative Phenomenological Analysis. Thirty-three subthemes emerged and were collated into three superordinate themes: 1) aspects of care and caregiving, 2) feelings and concerns, and 3) satisfaction with life and caregiving. This study identified a broad range of aspects that are of particular importance to the quality of life of older family carers of people with dementia. These findings are expected to inform future research as well as health and social care providers with the aim of improving life quality for this population.
Background: Providing care for a family member with dementia can leave little time for carers to look after their own health needs, which makes them more susceptible to mental and physical health problems. This scoping review aimed to explore potential health benefits of interventions aimed at improving health-promoting self-care in family carers of people with dementia.; Methods: A scoping review was carried out using Arksey and O'Malley's methodological framework. EMBASE, MEDLINE, PsycINFO and Google Scholar were consulted. Original and peer-reviewed research published in English up to April 2017 were included. Publications were selected by two reviewers independently. Eight experts from several countries provided extra relevant information, which was triangulated with the review results. A narrative approach was used to describe and discuss the review findings.; Results: Seven interventions were identified. These were highly heterogeneous in content, method of delivery, and outcome measures. None was specifically focused on improving and evaluating health-promoting self-care, instead they often focused on health promotion and healthy lifestyle (eg, physical activity). Some of the multi-component interventions included "self-care" as a domain, but none used a specific measure of health-promoting self-care, so we were unable to affirm that the improvements found in the interventions were due to an improvement in this area. Interventions helped reduce carer depression and burden and increased quality of life, positive affect, and physical activity. The expert panel recommended to consider carers' preparedness and capacity to adhere to self-care practices, as well as carers' age and culture. Future interventions should be context specific, flexible, and person-centered.; Conclusion: Psychosocial interventions may improve health-promoting self-care behavior, but more research is needed to establish efficacy. Interventions should be flexible, use a person-centered approach, be implemented with fidelity and use the right dosage.
The purpose of this study was to identify, classify and analyze the perceived needs of caregivers of elderly people with dementia during the care process. A descriptive phenomenological qualitative study using seven focus groups was conducted in different primary health care centers in the province of Jaén (Spain) between July 2012 and February 2013. Eighty-two family caregivers who were caring for people with dementia in different stages of the disease were selected by purposeful maximum variation sampling. Data were analyzed and organized thematically, considering the semantic and pragmatic content and field notes. Two main categories of the perceived needs of caregivers were identified. The first was related to the management of caring for a relative with dementia, and the second was related to the management of the caregivers' own care. Our findings support the provision of comprehensive interventions for the improvement of caregivers' emotional health that encompass more than one care need. This is where psycho-educational interventions aimed at managing the various aspects of dementia and self-care in caregivers can be accommodated. In addition, proactive interventions to develop important skills to care for a relative with dementia, which are not perceived as needs by the caregivers, are needed. These include skills in family negotiation, planning and searching for resources outside the family.
Background and Aim: The European Association of Palliative Care recommends that family carers need education on the progression of dementia. This systematic review aimed to explore whether interventions incorporating education regarding the progressive nature of dementia increased carers' understanding of dementia and improved mental health and burden.; Method: MEDLINE, PsycINFO and CINAHL were searched to April 2018. Randomised controlled trials with samples of family carers of someone with dementia were eligible. Included interventions involved a component aimed to increase the carer's understanding of the progression of dementia. Outcomes of interest included: knowledge of dementia, depression, burden and pre-death grief.; Results: Searches identified 3221 unique citations of which 11 studies were eligible for review. Interventions ranged from 4 to 16 sessions of which 1 to 3 sessions focused on the progression of dementia. Knowledge: Two studies evaluated carers' knowledge of dementia. One found no difference between the trial arms immediately after the intervention or three months later. The second found a significant intervention effect at the end of the intervention but not at three-month follow-up. Depression: Seven studies evaluated intervention effects on depression. Meta-analysis of three trials showed significant differences in mean follow-up scores favouring intervention over control. The remaining four studies did not show differences in depression between intervention and control groups. Burden: Nine studies evaluated burden and were examined in two meta-analyses (mean scores at follow-up and mean change scores from baseline to follow-up), neither of which found a benefit for intervention over control. Using the grading of recommendations assessment, development and evaluation system, we judged the quality of evidence to be very low for depression and low for burden, knowledge and pre-death grief, reducing our confidence in any of the effect estimates.; Conclusion: The evidence was not sufficient to support or refute the effectiveness of education on progression of dementia on carers' knowledge and mental health.
Objectives: The study evaluated the efficacy of an internet‐delivered cognitive‐behavioral intervention for caregivers of people with dementia and examined acceptance of program characteristics. Method: Thirty‐nine caregivers (Mage = 62.11 ± 9.67, 78.4% female) were enrolled in a 2 × 3 randomized‐controlled trial (RCT) that compared an intervention and wait‐list control group. A cognitive‐behavioral intervention program was adapted for delivery via an internet platform. Participants exchanged eight weekly messages with a therapist. Results: Treatment satisfaction and acceptance of the program were high. Well‐being increased over the intervention duration and intervention group participants were better able to cope with the anticipated death of the care recipient and utilized more psychosocial resources after the intervention ended. Effects were not maintained until follow‐up and there were no treatment effects for depression and burden of care. Conclusions: Internet‐delivered cognitive‐behavioral interventions are suitable for caregivers. A larger RCT needs to investigate possible combinations of classic and internet‐delivered programs and confirm efficacy.
Family members are prominent providers of necessary care to persons with dementia. The psychological, emotional, and social costs of care have led to the development of interventions to support these families. Although evidence supports the effectiveness of dementia caregiver interventions, few have been implemented into practice. Stakeholder involvement may increase the potential for interventions to be integrated into community contexts. Utilization of community advisory boards (CABs) have been identified as a successful strategy to engage stakeholders in research and intervention development. Yet, little is known about the use of CABs when developing and refining interventions in dementia care. This article presents a case study of a CAB intended to inform the development and translation of an online dementia caregiver resource: Care to Plan. Qualitative thematic analysis of transcripts from seven CAB meetings over a 3-year period identified two major categories. First, the CAB process: who participated, how meetings were conducted, and issues that arose. Second, Care to Plan improvement: how CAB members provided key stakeholder perspectives resulting in changes in language, functionality, substance, and dissemination. Findings demonstrate how CABs can inform gerontological social work when facilitating the development, translation, and implementation of meaningful, community-based resources for dementia caregivers.
Objectives: Familism is a cultural value that has been shown to be important for understanding the dementia caregiving process. The aim of this study is to analyze the psychometric properties of the Revised Familism Scale (RFS).; Method: Face-to-face assessments were done with 199 dementia family caregivers. Exploratory factor analysis, discriminant validity, and reliability analyses of the RFS were carried out.; Results: The results suggest that the RFS has good psychometric properties and is composed of three factors: "Familial interconnectedness", "Familial obligations", and "Extended family support".; Conclusion: The RFS seems to be a reliable measure of familism, a multidimensional construct measuring a relevant cultural value for dementia family caregivers.
Background: Alzheimer's disease and related dementias are irreversible, progressive brain disorders that slowly destroy memory, language, problem solving, and cognition. In the United States, dementia is the fifth leading cause of death for people age 65 years and older. Early diagnosis could have important benefits stigma related to dementia remains a significant impediment to diagnosis, treatment, and accessing services. While a growing body of research documents the existence and negative outcomes of stigma, less is known about how dementia-related stigma produces ill effects.; Aims: The purpose of this study was to use qualitative methods to explore how stigma manifests within families from the perspective of family caregivers of people with dementia.; Method: Using a grounded theory approach, we interviewed 13 family caregivers of people with dementia.; Results: Shame emerged as the central theme experienced by family caregivers of people with dementia. Attempting to manage shame, produced three categories of responses: (1) silencing and not calling attention to the symptoms, (2) concealing the diagnosis, and (3) shunning and avoiding contact.; Conclusions: Shame may be an underlying mechanism by which stigma is enacted and perpetuated, resulting in caregivers' isolation and delay in access to diagnostic and supportive services. Efforts to dispel the misconception that dementia is a shameful disease may be one way to diminish stigma.
Background and Objective: Alzheimer's disease or dementia can impose a significant burden on family and other informal caregivers. This study investigated how the inclusion of family/informal caregiver spillover effects in a cost-utility analysis may influence the reported value of Alzheimer's disease/dementia interventions. Methods: We used PubMed to identify Alzheimer's disease or dementia cost-utility analyses published from 1 January, 2000 to 31 March, 2018. We reviewed and abstracted information from each study using a two-reader consensus process. We investigated the frequency and methods in which family/caregiver spillover costs and health effects were incorporated into cost-utility analyses, and examined how their inclusion may influence the reported incremental cost-effectiveness ratios. Results: Of 63 Alzheimer's disease/dementia cost-utility analyses meeting inclusion criteria, 44 (70%) considered at least some family/caregiver spillover costs or health effects. Thirty-two studies incorporated spillover costs only, two incorporated spillover health effects only, and ten incorporated both. The most common approach for accounting for spillover was adding informal caregiving time costs to patient costs (n = 36) and adding informal caregiver quality-adjusted life-years to patient values (n = 7). In a subset of 33 incremental cost-effectiveness ratio pairs from 19 studies, incorporating spillover outcomes made incremental cost-effectiveness ratios more favorable (n = 15; 45%) or kept the intervention cost saving (n = 13; 39%) in most cases. In fewer cases, including spillover increased incremental cost-effectiveness ratios (n = 2; 6%), kept the intervention dominated [more costs/less quality-adjusted life-years] (n = 2; 6%), or changed incremental cost-effectiveness ratio from dominated to less cost/less quality-adjusted life-years (n = 1; 3%). In 11 cases (33%), adding spillover effects into analyses resulted in a lower incremental cost-effectiveness ratio that crossed a common cost-effectiveness threshold, which could have downstream implications for programs or policies that are adopted based on cost-effectiveness analysis results. Discussion: Most Alzheimer's disease/dementia cost-utility analyses incorporated spillover costs, often as caregiver time costs, but considered spillover health impacts less often. In about 85% of the analyses, including Alzheimer's disease/dementia spillover cost or health effects decreased incremental cost-effectiveness ratios or kept the intervention cost saving. The broader value of an Alzheimer's disease/dementia intervention to society may in some cases be underestimated without considering these spillover effects on family and informal caregivers.
Chinese family caregivers of dementia patients suffer considerable grief in their caregiving activity; little research has been conducted on dementia caregivers' grief in China. This study aims to (a) confirm the factor structure of the Mandarin version of the Marwit-Meuser Caregiver Grief Inventory-Short Form (MM-CGI-SF), (b) evaluate the levels of family caregivers' grief, and (c) explore the best predictors of family caregivers' grief. A cross-sectional study was conducted to collect data from 91 caregivers of dementia patients. The Mandarin version of the MM-CGI-SF had a three-factor structure. Family caregivers' grief was at an average level. Family caregivers' monthly household income and caring time per day predicted their own grief. The Mandarin version of the MM-CGI-SF possessed the same factor structure as the original English version, and the Chinese family caregivers experienced an average grief which was predicted by the monthly household income and caring time per day of the caregivers.
Background: Despite a large literature on the stress process, little attention has focused on how caregivers for persons living with dementia (PLWDs) provide care and how this may impact care outcomes. Criticism is a management strategy caregivers may use to respond to behavioral symptoms. We consider whether criticism is associated with caregivers' mental health and service utilization. Methods: Data are drawn from the Advancing Caregiver Training intervention study including 256 informal caregivers living with a PLWD. In multiple linear regressions controlling for caregivers' demographics and PLWDs' clinical factors, we consider criticism (criticism subscale of the Dementia Management Strategies Scale) as a predictor of caregiver burden, depressive symptoms, desire to institutionalize the PLWD, level of frustration with care, and the number of home-based, social, and health services utilized. Results: On average, 15% of the sample sometimes reported using criticism as a management strategy to manage the challenges of care. Greater use of criticism was associated with significantly more caregiver burden (β = 0.26, P < 0.001) and frustration with caregiving (β = 0.66, P < 0.001), but not depressive symptoms or a desire to institutionalize the PLWD. Criticism was also associated with significantly greater utilization of home-based (β = 0.14, P < 0.05) and social services (β = 0.15, P < 0.05), but not health care services. Conclusion: Criticism appears to be used by more burdened and frustrated caregivers. The association of criticism with social and home-based services potentially reflects a need for greater support among this group of caregivers. Behavioral interventions that can help caregivers manage behavioral symptoms with positive, empirically validated strategies may be helpful.
Objectives: To identify experiences, needs, interventions and outcomes for caregivers of persons with Alzheimer's disease or related dementia as they transition into this new role following diagnosis.; Design: Scoping review of published literature.; Data Sources: A search for published articles was conducted in PsycINFO, Scopus, Ovid and Web of Science databases.; Review Methods: The Arksey and O'Malley methodological framework guided the review. Studies were screened independently for inclusion by two persons. A total of 955 studies, after duplicates removed, were found by the database search. From these, 127 full-text articles were retained through the screening of titles and abstracts by two reviewers. The two reviewers assessed 46 full-text articles for eligibility. The final 29 studies identified caregiver experiences, needs, and interventions during the period following a diagnosis of Alzheimer's disease or related dementia in the scoping review.; Results: Twenty-nine studies were organized around three major categories: i) family caregiver experiences on receiving the diagnosis (n = 23), ii) needs during this time of transition (n = 18), and iii) interventions and outcomes to support their transition into the caregiver role (n = 5). While studies may have addressed more than one topic, 16 studies intersected categories of both caregiver experience and needs, and one study intersected categories of needs and interventions. There were several studies that focused more specifically on the caregiver's initial reactions to a diagnosis of Alzheimer's disease or related dementia (n = 9), the emotional responses to the diagnosis (n = 14), changes in personal relationships and responsibilities with a new role (n = 16). Caregiver needs following the diagnosis included knowledge and information (n = 14), emotional and psychological support (n = 11), and assistance with care planning (n = 7). Five papers examined interventions specifically tailored to caregiver needs at this juncture, which support the transition into the caregiver role.; Conclusions: The time of receiving a diagnosis of Alzheimer's disease or related dementia is a critical period in the process of transitioning into caregiver role. This period marks a new phase in the process of caring by family caregivers. Thus, it is important to fully understand the experiences and needs of caregivers and effective interventions in order to better support their transition into this new role.
Western health care policy emphasizes continuity of care for people with dementia. This paper presents formal and family caregivers' descriptions of collaboration in home-based dementia care and explores whether this collaboration inhibits or enables continuity of care and the use of the statutory individual plan. Empirical data were derived from 18 in-depth interviews with formal and family caregivers and brief fieldwork. The results reveal dynamic positions in collaborative practice and, from these positions, discrepancies in descriptions of practices and the needs of the person with dementia. Such micro-level discrepancies may serve as barriers for macro-level continuity of care objectives. To ensure continuity of care, formal and family caregivers must be aware of their positions and discuss specific expectations for information flow, involvement and care responsibilities. Individual plan can serve as a starting point for such discussions.
Background: Engagement of people with dementia who are living in the community, their family or carers, and healthcare professionals in decision-making related to their future care is an area yet to be explored in the literature. In particular, little is known about the factors most likely to underpin their engagement.; Objectives: To identify key factors for the engagement of the person with dementia living in the community, as well as their family or carer and their healthcare professionals in decision-making processes related to future care.; Design: This is an integrative review guided by the PRISMA guidelines; the Mixed Methods Appraisal Tool was used to assess study quality. MEDLINE, PubMed, CINAHL, PsycINFO and Embase databases were searched for articles published from 2012 to 2018 that focused on people with dementia who live in the community, their family or carers, and community-based healthcare professionals.; Results: Twenty articles were included in the review, and six key factors were identified through thematic analysis: knowledge and understanding of dementia and decision-making for the future, valuing decision-making for the future, healthcare professionals' communication skills, timing of initiating conversations, relationship quality, and orientation to the future.; Conclusion: This review identifies the six key factors required for the engagement of the three primary key stakeholders in decision-making about the future care of people with dementia. It also situates the factors within the complex context in which people with dementia, their family or carers, and healthcare professionals typically find themselves.
The relationships between caregiver burden as measured with the Burden Scale for Family Caregivers–short form and 6 characteristics of caregivers caring for patients with dementia were investigated for caregivers from England (n = 36), Finland (n = 42), and Greece (n = 46) using survey data. In all 3 countries, caregiver burden increases with physical problems of the caregiver, emotional problems of the caregiver, and weekly hours of care. Hence, in all 3 countries, special support for informal care is required when these characteristics are at high levels. When the caregiver is a spouse or long-term partner of the person with dementia, lives in the same house as this person, or spends fewer than 20 h/wk for other duties than care, this is associated with less caregiver burden in England but with more caregiver burden in Greece. Accordingly, special support is required for Greek caregivers with these characteristics, but the opposite is true for English caregivers.
Young-onset Alzheimer disease (YOAD) causes psychological and emotional difficulties for carers. However, even in the face of considerable caregiving demands and burden, some carers are resistant to stress, which may be a sign of resilience. This study investigated whether the clinical symptoms of the person with YOAD might be associated with resilience in their carers. A consecutive series of 43 persons with YOAD and their 43 family caregivers were assessed. The carers showed moderate to high level of resilience, low level of anxiety and depressive symptoms, and moderate level of burden. No relationship was found between resilience and sociodemographic characteristics of both carers and care recipient and with clinical characteristics of persons with YOAD. A linear regression analysis showed that resilience was inversely associated with carers' depressive symptoms. The findings suggest that resilience may mainly be related to carers' mental health.
Background: Despite the enormous number of assistive technologies (ATs) in dementia care, the management of challenging behavior (CB) of persons with dementia (PwD) by informal caregivers in home care is widely disregarded. The first-line strategy to manage CB is to support the understanding of the underlying causes of CB to formulate individualized nonpharmacological interventions. App- and sensor-based approaches combining multimodal sensors (actimetry and other modalities) and caregiver information are innovative ways to support the understanding of CB for family caregivers.; Objective: The main aim of this study is to describe the design of a feasibility study consisting of an outcome and a process evaluation of a newly developed app- and sensor-based intervention to manage CB of PwD for family caregivers at home.; Methods: In this feasibility study, we perform an outcome and a process evaluation with a pre-post descriptive design over an 8-week intervention period. The Medical Research Council framework guides the design of this feasibility study. The data on 20 dyads (primary caregiver and PwD) are gathered through standardized questionnaires, protocols, and log files as well as semistructured qualitative interviews. The outcome measures (neuropsychiatric inventory and Cohen-Mansfield agitation inventory) are analyzed by using descriptive statistics and statistical tests relevant to the individual assessments (eg, chi-square test and Wilcoxon signed-rank test). For the analysis of the process data, the Unified Theory of Acceptance and Use of Technology is used. Log files are analyzed by using descriptive statistics, protocols are analyzed by using documentary analysis, and semistructured interviews are analyzed deductively using content analysis.; Results: The newly developed app- and sensor-based AT has been developed and was evaluated until July in 2018. The recruitment of dyads started in September 2017 and was concluded in March 2018. The data collection was completed at the end of July 2018.; Conclusions: This study presents the protocol of the first feasibility study to encompass an outcome and process evaluation to assess a complex app- and sensor-based AT combining multimodal actimetry sensors for informal caregivers to manage CB. The feasibility study will provide in-depth information about the study procedure and on how to optimize the design of the intervention and its delivery.; International Registered Report Identifier (irrid): DERR1-10.2196/11630.
Background/Objective: Recent interventions aim to heighten informal caregivers' empathy levels assuming that this will lead to better well-being. However, previous studies have explored linear associations between empathy and aspects of well-being and yielded mixed results. We hypothesized that quadratic models may be more fitting to describe these relationships. Method: A cross-sectional study, with two groups (201 informal caregivers, and 187 non-caregivers) was conducted. Participants completed questionnaires on cognitive and affective empathy, and depression, anxiety, and caregiver burden. AN(C)OVA's and multiple hierarchical regression analyses including linear and quadratic terms were used to analyze the data. Results: For caregivers, there was a negative quadratic relationship between depression and cognitive empathy, and a positive linear relationship between anxiety and affective empathy, irrespective of sociodemographic characteristics. For non-caregivers, there were positive quadratic relationships between depression and cognitive and affective empathy, and between anxiety and affective empathy. The empathy levels did not differ between the groups. Conclusions: While caregivers and non-caregivers had the same amount of empathy, the relationships between empathy and depression and anxiety differed between the groups. Interventions for informal caregivers could aim to heighten cognitive empathy and to lower affective empathy to diminish depression and anxiety symptoms.
Objectives: Our objective was to determine whether family caregivers of people with dementia (PwD) are willing to pay for an in-home intervention that provides strategies to manage behavioral symptoms and caregiver stress and to identify predictors of willingness-to-pay (WTP).; Methods: During baseline interviews of a randomized trial and before treatment assignment, caregivers were asked how much they were willing to pay per session for an eight-session program over 3 months. We stratified the sample into those who refused to provide a WTP, those willing to pay $US0, and those willing to pay > $US0. We used a two-part model, controlling for demographic characteristics, to predict adjusted mean WTP and to examine associations between WTP, clinical features (cognition, function, behavioral symptoms), and time spent assisting PwD with daily activities. First, we used logistic regression to model the probability a caregiver was willing to pay > $US0. Second, we used a generalized linear model (log link and Gamma distribution) to estimate the amount caregivers were willing to pay conditional on WTP > $US0.; Results: Of 250 dyads enrolled, 226 (90%) had complete data and were included in our analyses. Of 226 dyads, 26 (11%) refused to provide a WTP value, 72 (32%) were willing to pay $US0, and 128 (57%) were willing to pay > $US0. In the combined model, mean adjusted WTP was $US36.00 (95% confidence interval [CI] 26.72-45.27) per session. Clinical features were not significantly associated with WTP. One additional hour providing PwD assistance was associated with a $US1.64 (95% CI 0.23-3.04) increase in WTP per session.; Conclusion: As caregivers spend more time assisting with daily activities, they are willing to pay more for a supportive program.; Clinical Trial Registration Number: NCT01892579.
Less is known about how caregivers prepare (or not) for the death of a family member with dementia. This study's purpose was to explore how caregivers handle these dementia deaths, including identification of barriers and facilitators to preparing caregivers for the death of an elder family member dying with dementia. This qualitative, descriptive study employed a purposive sampling strategy in which the principal investigator interviewed 36 caregivers of family members age 65 and older who died from a dementia-related diagnosis. Directed content analysis was used to analyze the data. Four primary themes were identified as barriers: (1) hindrances to information; (2) barriers to hospice; (3) ineffective attempts to comfort; and (4) the nature of death with dementia. Six themes were identified as facilitators: (1) religious/spiritual beliefs; (2) caregiver initiative; (3) prior experience; (4) bearing witness to decline; (5) professionals alerting caregiver (of what to expect of impending death); and (6) culture and legacy of family caregiving. The results support an increased role of social work in addressing caregivers' awareness of impending death and helping prepare them for the death of an elder with dementia.
Objectives: To examine the stress-buffering effect of coping strategies on the adverse effects of interrole conflict on the mental health of employed family caregivers, and clarify the moderating role of attentional control on this stress-buffering effect. Methods: Data were drawn from a two-wave longitudinal online survey of employed Japanese family caregivers of people with dementia (263 males, 116 females; age 51.54 ± 9.07 years). We assessed interrole conflict, coping strategies, attentional control, mental health variables (psychological strain and quality of life), and confounding factors. Results: Hierarchical regression analyses controlled for sociodemographic factors found formal support seeking had a stress-buffering effect for strain- and behavior-based caregiving interfering with work (CIW) only on psychological strain, and was moderated by attentional control. Single slope analysis showed higher CIW was related to higher psychological strain in those with greater use of formal support seeking and lower attentional control, but not in those with higher attentional control. Conclusions: Greater use