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 behaviour in family carers of people with dementia. Research Design and Methods: This multimethod qualitative study involved three consultation
(Edited publisher abstract)
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 behaviour 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 behaviour. 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.
(Edited publisher abstract)
Subject terms:
self care, user views, service users, carers, qualitative research, dementia, health education, prevention, continuity of care, Alzheimers disease, attitudes, family members, short break care, service provision;
Objectives: Research on caregiving interventions has increased substantially in recent years. Although many promising approaches have been tested, results are often modest. The goal of this paper is to identify conceptual and methodological issues that could lead to better treatment outcome. Method: A critical review of the literature on interventions for caregivers of persons with dementia
(Publisher abstract)
Objectives: Research on caregiving interventions has increased substantially in recent years. Although many promising approaches have been tested, results are often modest. The goal of this paper is to identify conceptual and methodological issues that could lead to better treatment outcome. Method: A critical review of the literature on interventions for caregivers of persons with dementia. Results: A fundamental issue in caregiver interventions is what are appropriate goals for treatment and what outcome measures should be used to address those goals. There also needs to be more testing of the mechanisms by which treatment leads to improvement. Intervention studies should also more regularly examine fidelity of treatment implementation. Conclusion: Recommendations are made for improving the design of future trials through better attention to the heterogeneity of the caregiving population, improved conceptualization of goals and the use of innovative designs that accommodate differences in caregivers’ needs and resources.
(Publisher abstract)
Subject terms:
carers, literature reviews, intervention, dementia, outcomes, research methods;
This study examines the effects of the use of adult day service (ADS) by caregivers of individuals with dementia (IWD) on daily stressors, affect, and health symptoms. Participants were interviewed for 8 consecutive days. On some days, the IWD attended an ADS program and on the other days caregivers provide most or all of the care at home. Participants were 173 family caregivers of IWDs using
(Edited publisher abstract)
This study examines the effects of the use of adult day service (ADS) by caregivers of individuals with dementia (IWD) on daily stressors, affect, and health symptoms. Participants were interviewed for 8 consecutive days. On some days, the IWD attended an ADS program and on the other days caregivers provide most or all of the care at home. Participants were 173 family caregivers of IWDs using an ADS program. Daily telephone interviews assessed care-related stressors, noncare stressors, positive events, affect, and health symptoms. Multilevel models with data nested within persons were used to examine effects of ADS use on daily stressor exposure, affect, and health symptoms. Caregivers had lower exposure to care-related stressors on ADS days, more positive experiences, and more noncare stressors. ADS use lowered anger and reduced the impact of noncare stressors on depressive symptoms. The findings demonstrate that stressors on caregivers are partly lowered, and affect is improved on ADS days, which may provide protection against the effects of chronic stress associated with caregiving.
(Edited publisher abstract)
...of the individualised intervention protocol as planned (program fidelity). This study explores the fidelity of implementation of an adaptive intervention for family caregivers of persons with dementia and its acceptability to the caregivers. The sample consisted of 35 family caregivers (mean age 61 years, 65% female) of community dwelling people with dementia living in the greater Cleveland area. Information
Adaptive interventions, in which a program or intervention is tailored to the specific needs of an individual, are being used for treatment of different types of social and behavioural challenges as a way of addressing their heterogeneity. However there is little research on the acceptability of these interventions to the people who receive them. A particular challenge is the implementation of the individualised intervention protocol as planned (program fidelity). This study explores the fidelity of implementation of an adaptive intervention for family caregivers of persons with dementia and its acceptability to the caregivers. The sample consisted of 35 family caregivers (mean age 61 years, 65% female) of community dwelling people with dementia living in the greater Cleveland area. Information was gathered on acceptability and fidelity from multiple sources, including caregiver and counsellor reports and ratings of session recordings. The findings indicate that caregivers have high levels of acceptance of the intervention plan and high ratings of satisfaction with the program. Ratings of satisfaction and counsellor competence were not associated with the amount of treatment provided. Ratings by counsellors and independent raters found good fidelity for two of the three program domains (caregiver’s roles and relationships and resources but not care demands.
Aging and Mental Health, 14(2), March 2010, pp.220-231.
Publisher:
Taylor and Francis
Understanding the association among risk factors and outcomes commonly used in research on family caregivers can better inform the design of assessment and interventions. This paper examines the associations among risk factors (eg behavioural problems, family conflict) and outcomes (eg overload, depression) in a sample of family caregivers of persons with dementia. The participants were 67...
Understanding the association among risk factors and outcomes commonly used in research on family caregivers can better inform the design of assessment and interventions. This paper examines the associations among risk factors (eg behavioural problems, family conflict) and outcomes (eg overload, depression) in a sample of family caregivers of persons with dementia. The participants were 67 caregivers caring for a family member in the middle stages of dementia in the greater Cleveland metropolitan area. The caregivers were interviewed in their own homes, with the interviews covering sociodemographic characteristics, 15 risk factors and 6 outcome measures. The results showed that risk factors were at best only moderately correlated with one another, suggesting their relative independence. The outcome measures showed somewhat higher correlations with one another, but participants varied in terms of the number and type of outcomes that were elevated. The multivariate results showed that risk factors differed in their contribution to models, predicting various outcomes. The article concludes that caregivers possess unique combinations of risk factors and outcomes that suggest the need for individualised or tailored interventions. Designing an effective caregiver assessment and corresponding targeted intervention requires careful planning and selection of appropriate risk factors and outcomes.
To expand knowledge concerning the significance of kin relationships in caregiving, this study assessed predictors of the timing of institutionalization for persons with dementia. The focus was on whether use of adult day care by wives and daughters holds the same implications for placement. Guided by a caregiving stress process model, primary objective and subjective stressors, secondary
To expand knowledge concerning the significance of kin relationships in caregiving, this study assessed predictors of the timing of institutionalization for persons with dementia. The focus was on whether use of adult day care by wives and daughters holds the same implications for placement. Guided by a caregiving stress process model, primary objective and subjective stressors, secondary stressors, caregiver well-being, and use of day care services were included as predictors. Cox proportional hazards models were tested using a sample of 371 community-dwelling caregivers in the USA, including 141 wives and 230 daughters and daughters-in-law. The main effect of kinship was found to be significant before interactions were introduced. Adult day care use at Time 1, role captivity, role overload, and social impact were subsequently found to interact with kinship. Analyses indicated that wives who used adult day care placed their husbands to a nursing home earlier than their counterparts. Among daughters, however, those who used adult day care were more likely to postpone the placement. The influence of role overload was also stronger in wives than in daughters in predicting the timing of placement. A similar pattern was observed in the interaction between social impact and kinship. Implications: The results demonstrate that factors influencing nursing home placement may vary according to the caregiver's familial relationship to the relative. Different approaches may be needed when targeting wife vs. daughter caregivers, especially when designing adult day care programs.
Subject terms:
nursing homes, older people, placement, relatives, admission to care, carers, cognitive impairment, day services, dementia, families;
International Journal of Geriatric Psychiatry, 23(4), April 2008, pp.433-438.
Publisher:
Wiley
The importance of early detection of dementia has been highlighted in recent years by the medical and scientific community; however, delays often occur between the recognition of signs or symptoms and a decision by the patient or family to seek professional help. Such delays may be caused by a lack of knowledge about dementia among patients and family members. The aim of this study...
The importance of early detection of dementia has been highlighted in recent years by the medical and scientific community; however, delays often occur between the recognition of signs or symptoms and a decision by the patient or family to seek professional help. Such delays may be caused by a lack of knowledge about dementia among patients and family members. The aim of this study was to determine the understanding of dementia among the general public. A survey in Japan was conducted that asked 11 questions regarding knowledge of general information, symptoms, and biomedical issues related to dementia. A quota sampling method was used to select 2,500 participants, 2,115 of who were eligible for the analyses. The average number of correct responses among females was significantly greater than that among the males. A multiple comparisons test demonstrated that middle-aged women were more knowledgeable than younger and older respondents. It was revealed that there was a lack of knowledge on biomedical aspects of dementia, i.e. cause, treatment, and prognosis along with a misunderstanding of dementia as senescence forgetfulness among the general public. There appeared to be gaps in knowledge on dementia among the general public, which may prevent caregivers from planning upcoming social and financial challenges. Correct information needs to be given by health professionals and care staff. Educational initiatives planned for the general public could be useful, and should target those groups, men and non-middle aged women who have lower knowledge.
Subject terms:
public opinion, surveys, dementia, health education;
...in institutional settings. Updated throughout, the second edition features many new case examples, a new chapter on treating anxiety, and innovative assessment strategies. Increased attention is given to different forms of dementia and how to distinguish among them. Coverage of psychopharmacology and combined treatments also has been expanded.
Now in a revised and expanded second edition, this book provides foundational knowledge and skills for mental health practice with older adults and their caregivers. The authors draw on research and clinical expertise to comprehensively address normal aging processes, frequently encountered clinical problems, and effective approaches to evaluation, psychotherapy, family support, and consultation in institutional settings. Updated throughout, the second edition features many new case examples, a new chapter on treating anxiety, and innovative assessment strategies. Increased attention is given to different forms of dementia and how to distinguish among them. Coverage of psychopharmacology and combined treatments also has been expanded.
Subject terms:
mental health problems, older people, psychotherapy, treatment, therapy and treatment, assessment, families, evaluation;
GAUGLER Joseph E., POT Anne Margriet, ZARIT Steven H.
Journal article citation:
Gerontologist, 47(6), December 2007, pp.721-729.
Publisher:
Oxford University Press
Longitudinal research in dementia has acknowledged the importance of transitions during the course of family caregiving. However, long-term adaptation to institutionalization has received little attention. This American study attempts to describe caregivers' adaptation (changes in stress, well-being, and psychosocial resources) to placement up to 4 years following institutionalization. Using data
Longitudinal research in dementia has acknowledged the importance of transitions during the course of family caregiving. However, long-term adaptation to institutionalization has received little attention. This American study attempts to describe caregivers' adaptation (changes in stress, well-being, and psychosocial resources) to placement up to 4 years following institutionalization. Using data from the Caregiver Stress and Coping Study, this analysis constructed four longitudinal panels, each consisting of a pre-placement assessment and either two (n = 146), three (n = 109), four (n = 75), or five (n = 38) waves after placement. The study used growth curve models to examine longitudinal trajectories of adaptation in various measures of stress, global well-being, and psychosocial resources. The findings suggested sharper decreases in stressors (e.g., role overload) and indicators of negative mental health in the shorter term panels. However, more significant intraindividual variation existed in caregivers' adaptation to placement in the longer term panels (four and five waves of post placement). There is relative stability in caregiver long-term adaptation to institutionalization. However, the variability in adaptation emphasizes the need to target post placement clinical interventions to families most at risk for negative outcomes during the transition to institutional care.
Subject terms:
long term care, longitudinal studies, stress, admission to care, carers, care homes, dementia;
International Journal of Geriatric Psychiatry, 21(2), February 2006, pp.163-170.
Publisher:
Wiley
The aim was to examine whether the use of care services reduces the feelings of burden among family caregivers in Japan. Specifically, the study was aimed at testing the following three hypotheses: (1) The severity of impairment and the dementia among the disabled elderly increases the feelings of burden among family caregivers and the support from family members decreases burden: (2) the amount...
The aim was to examine whether the use of care services reduces the feelings of burden among family caregivers in Japan. Specifically, the study was aimed at testing the following three hypotheses: (1) The severity of impairment and the dementia among the disabled elderly increases the feelings of burden among family caregivers and the support from family members decreases burden: (2) the amount of services used by older people and their caregivers is affected by the severity of dementia and ADL deficiencies among the disabled elderly and the amount of support from family members: and (3) controlling for severity, the use of care services under the LTC insurance program serves to reduce the feelings of burden among family caregivers. A structural equation model using the data obtained from 82 pairs of community-dwelling disabled elderly and their principal family caregivers. The model included the following variables: age of the disabled elderly; the severity of ADL deficiency and behavioral disturbances; use of formal (public) care services; support from family members; and feelings of burden among family caregivers.The structural equation model revealed that, after controlling for the effects of severity on service use, home care services effectively reduce feelings of burden among family caregivers. The findings suggest that care services provided under the LTC insurance have been successfully reducing burden among family caregivers in the study area.
Subject terms:
home care, physical disabilities, access to services, activities of daily living, carers, families;