Predictors of Institutionalization for Persons with Alzheimer’s Disease and the Impact on Family Caregivers This study examines the factors which differentiate family caregivers who placed (n = 284) versus continued to provide in-home care (n = 642) to relatives with dementia over a 2-year period. Caregiver variables (i.e., income, kin relations, depression, burden, physical health, and social support) and care receiver variables (i.e., level of functional impairment and age) were entered into a logistic regression analysis predicting subsequent placement versus continuing care at home. Results indicate that compared to continuing care subjects, caregivers most likely to place their family member were more depressed, caring for impaired relatives with more problem behaviors (e.g., wandering, inappropriate behavior) and receiving respite assistance. After placement, caregivers were found to be more burdened and to have declined slightly in their levels of subjective physical health. Findings suggest that interventions for family caregivers before and after placement may be beneficial in alleviating the negative effects of this stressful transition. Read more
Effect of Giving Care on Caregivers’ Health This longitudinal study of 121 caregivers of the elderly evaluates the change in their self-assessed mental and physical health over two years. The care recipients, who were drawn from a random sample of noninstitutionalized urban elders, showed increased need for help with personal and instrumental activities of daily living in this period. Both the physical and mental health of the caregivers declined significantly during the study. Predictors of decline in physical health of the caregivers at the end of the study were poorer physical health at the start, the amount of help they provided, a decline in their own mental health, and an increase in the number of other persons also available to provide care. In contrast, decline in caregivers’ mental health at the end was predicted only by poorer mental health at the start and by decline in physical health. Read more
Screening Tools and Referral Protocol for Stopping Abuse Against Older Ohioans A Guide for Service Providers Screening Tools and Referral Protocol for Stopping Abuse Against Older Ohioans: A Guide for Service Providers (STRP) represents the product of an 18 month project aimed at improving the identification and reporting of elder abuse and domestic violence in late life. This article presents each component of STRP, describing it in detail and suggesting when and how it can be used. Recommendations also are offered for the replication of STRP in other locales as well as for its further evaluation. (Full set of materials including Appendices can be obtained from The Benjamin Rose Institute.) Read more
Cognitive Assessments in Late-Stage Dementia The purpose of this chapter is not to provide an extensive overview of all or most of the instruments used to assess cognitive function in late-stage dementia. Such compilations already exist, and their authors have done an excellent job of summarizing assessment instruments currently in use (e.g., Auer, Sclan, Yaffee, & Reisberg, 1994; Bellelli, Frisoni, Bianchetti, & Trabucchi, 1997; Morris, 1997; Doody, Strehlow, Massman, Feher, Clark, & Roy, 1999; Perlick & Mattis, 1994; Reisberg, Sclan, Franssen, Kluger, & Ferris, 1994, 1996; Weiner et al., 1996). Our review of some of the instruments used for assessing cognition in late-stage dementia is done within a different context. The focus of this chapter is to encourage the development of new instruments designed to assist in the development and assessment of new interventions for this population. Therefore, we discuss not only the information that current instruments provide but also what they do not provide. We attempt to elaborate a framework or set of boundary conditions for a new generation of cognitive assessment measures and discuss the uses of such measures. It is our hope that readers of this chapter will be encouraged to view cognitive assessment in late-stage dementia as an integral part or an overall program for designing interventions (Weaverdyck, 1990, 1991a, 1991b). To illustrate these points, we offer examples of some initial efforts in this area. Read more
The Buffering Effect of a Computer Support Network on Caregiver Strain ComputerLink was a computer support network for family caregivers of people with Alzheimer's disease. In a 12-month experiment, 102 caregivers were randomly assigned to an experimental group that had access to ComputerLink or to a control group that did not. This investigation examined whether caregivers in the experimental group had greater reductions in four types of care-related strain by the end of the 1-year study. ComputerLink reduced certain types of strain if caregivers also had larger informal support networks, were spouses, or did not live alone with their care receivers. More frequent use of the communication function was related to significantly reduced strain for caregivers who were initially more stressed and for non-spouse caregivers. Greater use of the information function was related to significantly lower strain among caregivers who lived alone with care receivers. Overall, ComputerLink appeared to be an effective tool for reducing strain for some caregivers. Read more
Family Caregivers and In-Home Respite Options The Consumer-Directed Verses Agency-Based Experience This study examined the preferences for and characteristics of consumer-directed (i.e., direct pay) and professionally-managed (i.e., agency-based) respite for family caregivers of adults with cognitive impairments. The sample of 168 caregivers was drawn from the in-home respite caseload of California’s Caregiver Resource Centers. Respondents in both groups reported the same ‘‘most important’’ reasons for preferring their respective mode of respite: wanting to be sure their loved one was safe, and having good, reliable and trustworthy help. The data revealed a clear preference for consumer direction in respite care in the home. Practice implications are addressed for improving the delivery of in-home respite care. Read more
Distress and Burden for Family Caregivers Providing care to an older adult with a dementing condition is often associated with a variety of physical and mental health conditions. Substantial empirical evidence indicates that caregivers are in poorer physical health and experience depressed immunologic functioning (Kiecolt-Glaser et al., 1987; Stone et al, 1987; Schulz et al., 1995; Tennstedt et al., 1992), use prescription drugs for depression, anxiety, and insomnia two to three times as often as the rest of the population, and report higher levels of depression, anger, and anxiety (Anthony-Bergstone et al., 1988; Gallagher et al., 1989; Haley et al., 1987). As a result of over 20 years of research, it is now widely accepted that providing care for a person with dementia is stressful and demanding. Caregiver burden, the term often used to describe the stress experienced by caregivers who provide hands-on care to impaired relatives, has received a great deal of attention from the research, practice, and policy communities. What was once a unidimensional concept reflecting a family caregiver’s general level of stress has evolved over the years into a multidimensional phenomenon that applies to both informal and formal caregivers. In describing this transformation, the present chapter will first provide a brief history of family caregiving research and burden. Next, more recent advancements in the study of burden will be presented with an emphasis on innovations in research and intervention. The chapter ends with discussion of future directions for research and intervention. Read more
A Computer Network for Alzheimer’s Caregivers and Use of Support Group Services Computer networks of informal caregivers may serve as an alternative to more traditional face-to-face support services. This investigation examines whether a computer support network for family caregivers of persons with Alzheimer, s disease affects their use of support groups for family members. Two competing hypotheses are examined: one posits that the use of a computer network will be substituted for participation in support groups, while the alternative hypothesis suggests that the computer network will supplement or increase support group use. A longitudinal analysis indicated a relationship between use of the computer network and changes in support group attendance. The relationship, however, is sometimes supplementation and sometimes substitution, depending on the caregiver's previous use of support groups. We offer an interpretation of the changing relationship that is based on the predispositions, abilities, and needs of the caregiver for support services. Read more
Institutionalization A Continuation of Family Care It is often assumed that with institutionalization comes an end to family caregiving. The goal of this study is to show that family caregiving continues even after institutionalization of the care recipient. The data come from 81 families who institutionalized their elders. The findings indicate that families remain involved in the care of the elder after institutionalization, although to a lesser degree and in different ways. Involvement in personal care tasks is reduced, not terminated; involvement in the specialized needs of the elder, such as their financial and legal concerns, continues, along with the new role of advocacy. The effects of caregiving are still felt by the primary caregiver, as are the effects of institutionalizing the care recipient. Read more
