Are there sensitive time periods for dementia caregivers? The occurrence of behavioral and psychological symptoms in the early stages of dementia.

BACKGROUND: The behavioral and psychological symptoms associated with dementia (BPSD) can be burdensome to informal/family caregivers, negatively affecting mental health and expediting the institutionalization of patients. Because the dementia patient-caregiver relationship extends over long periods of time, it is useful to examine how BPSD impact caregiver depressive symptoms at varied stages of illness. The goal of this study was to assess the association of BPSD that occur during early stage dementia with subsequent caregiver depressive symptoms. METHODS: Patients were followed from the early stages of dementia every six months for up to 12 years or until death (n = 160). Caregiver symptoms were assessed on average 4.5 years following patient's early dementia behaviors. A generalized estimating equation (GEE) extension of the logistic regression model was used to determine the association between informal caregiver depressive symptoms and BPSD symptoms that occurred at the earliest stages dementia, including those persistent during the first year of dementia diagnosis. RESULTS: BPSD were common in early dementia. None of the individual symptoms observed during the first year of early stage dementia significantly impacted subsequent caregiver depressive symptoms. Only patient agitation/aggression was associated with subsequent caregiver depressive symptoms (OR = 1.76; 95% CI = 1.04-2.97) after controlling for concurrent BPSD, although not in fully adjusted models. CONCLUSIONS: Persistent agitation/aggression early in dementia diagnosis may be associated with subsequent depressive symptoms in caregivers. Future longitudinal analyses of the dementia caregiving relationship should continue to examine the negative impact of persistent agitation/aggression in the diagnosis of early stage dementia on caregivers.

Family involvement in residential long-term care: a synthesis and critical review.

The objective of this review is to critically synthesize the existing literature on family involvement in residential long-term care. Studies that examined family involvement in various long-term care venues were identified through extensive searches of the literature. Future research and practice must consider the complexity of family structure, adopt longitudinal designs, provide direct empirical links between family involvement and resident outcomes, and offer rigorous evaluation of interventions in order to refine the literature.

Family involvement in nursing homes: effects on stress and well-being.

While it is clear that families remain involved in the lives of loved ones following placement in a nursing home, little research has examined whether visiting and the provision of care has effects on the emotional stress and psychological well-being of family members. Utilizing pre-placement and post-placement data from the Caregiver Stress and Coping Study (n = 185) as well as a theoretical framework to delineate the manifestation of caregiver stress (i.e., the stress process model), the goal of this analysis was to determine whether frequency of visits and provision of personal and instrumental activities of daily living assistance following institutionalization were related to post-placement emotional distress, family conflict, and psychological well-being among family members. Following control of a wide array of pre-placement and post-placement covariates, multiple regression models found that visiting was negatively associated with post-placement role overload; moreover, the provision of instrumental activities of daily living help was negatively related to loss of intimate exchange at post-placement. The results suggest that family involvement following institutionalization may operate differently than when in the community, and add to the literature emphasizing the positive implications of family involvement in residential long-term care.

Relinquishing in-home dementia care: difficulties and perceived helpfulness during the nursing home transition.

Institutionalization of an elderly relative suffering from dementia is a key transition in the caregiving career. This study determines factors that predict the problems and help dementia caregivers perceive while institutionalizing an elderly relative. By using a sample of 185 dementia caregivers interviewed before and after institutionalization, the authors conducted a multivariate regression to identify relevant predictors of search difficulties, professional help, and family help during the nursing home transition. The personal and social resources of caregivers prior to placement (e.g., mastery, family conflict, socioemotional support, duration of care, education, and physical health) were reliable predictors of search difficulties and perceived helpfulness. Such findings will prove useful to long-term care practitioners who wish to facilitate the institutionalization process for caregiving families.

The effectiveness of adult day services for disabled older people.

Adult day care has attracted a considerable amount of attention among researchers, practitioners, and policymakers. However, there have been few efforts to synthesize empirical results. This paper reviews research that determines the effectiveness of adult day services in improving client functioning, alleviating caregiver stress, and delaying nursing home placement. In addition, the strengths and limitations of the research are considered. This paper concludes with a discussion of policy-relevant issues that must be addressed when determining the effectiveness of adult day services.

Modeling caregiver adaptation over time: the longitudinal impact of behavior problems.

Although cross-sectional research has established the link between care demands and various indicators of caregiver adaptation, few studies have examined the impact of care recipients' problematic behavior over time. The present analysis determines the importance of behavior problems when predicting rates of change in subjective stressors (role overload and role captivity) and depression. Using 4-wave longitudinal data (N = 137) on dementia caregivers, the authors fit individual growth curve models for care demands (i.e., behavior problems, activities of daily living dependencies, and cognitive impairment), subjective stressors, and depression. Subsequent structural equation models found that increases in behavior problems were most likely to predict increases in role overload. The findings emphasize the deleterious long-term impact of behavior problems on individuals' emotional adaptation to caregiving.

Predictors of institutionalization of cognitively impaired elders: family help and the timing of placement.

Although predictors of nursing home placement have attracted a good deal of attention in gerontological research, the type and amount of family assistance offered to caregivers prior to institutionalization has not been extensively examined. This study analyzed the impact of family help on the timing of placement among cognitively impaired care recipients. Using longitudinal data from the Adult Day Care Collaborative Study, an event-history analysis was performed to determine the effects of family help after sociodemographic characteristics, caregiving stressors, and indicators of caregiver well-being were taken into account. Results showed that caregivers were far less likely to institutionalize their relatives when family members provided overnight help and assisted with activities of daily living care. These findings suggest that specific types of family help play an important role in delaying nursing home placement among older adults suffering from dementia.

Caregiving and institutionalization: perceptions of family conflict and socioemotional support.

This study examines the impact of family conflict and socioemotional support among caregivers who institutionize their relatives. Fifty-two wives, forty-three husbands, and sixty-seven daughters were interviewed before and after the placement of a cognitively impaired relative. A repeated measures ANOVA was performed to examine differences in reports of family conflict and socioemotional support among caregivers. Husbands reported greater increases in family conflict than wives or daughters during the institutionization process. Conversely, wives and daughters indicated higher levels of socioemotional support than husbands. Hierarchical regression equations were then calculated to assess the independent contributions of family conflict and socioemotional support to postplacement adaptation. Decreases in socioemotional support during institutionalization significantly predicted postplacement anger among husbands and increases in family conflict significantly predicted postplacement depression among wives. Overall, family conflict and socioemotional support have important implications among caregivers who institutionalize their relatives.

Useful services for families: research findings and directions.

A major tenet of gerontological practice and policy has been that community-based services relieve stress on family caregivers and delay or prevent institutionalization of frail elders. Evidence for benefits of community-based services is examined from four perspectives: (1) relief for family caregivers; (2) benefits to older clients; (3) delay or prevention of institutionalization; and (4) cost-effectiveness or cost-benefits of a service. Studies are grouped according to the type of service (in-home respite, adult day care, overnight respite, case management and multicomponent programs) and type of clients (dementia only or mixed). There are surprisingly few empirical studies overall and the reported benefits typically are modest. Methodological problems as well as providing relatively small amounts of service may have accounted for these findings. Studies in which clients and/or their families received adequate amounts of help showed more consistently positive outcomes. There is little evidence, however, to suggest that community services delay placement. More needs to be done to examine the benefits of innovative programs, and particularly to incorporate the dementia patient's perspective into these evaluations.