Caregiving and Caregiver Interventions in Aging and Mental Illness (1999)

Caregiving and Caregiver Interventions in Aging and Mental Illness* There has been an explosion of scientific literature pertaining to family caregiving over the past several decades, Most studies focus on caregivers providing care to patients with a particular illness or functional disability. Two of the largest and richest literatures pertain to caregiving in aging, both dementia and non-dementia caregiving, and caregiving to adults with mental illness, most often, individuals with Schizophrenia. This paper and the Special Issue focuses primarily on caregiving in both of these arenas. We begin with an overview of the extent and nature of family caregiving and a discussion of conceptual models of the caregiving experience. This is followed by a discussion of the caregiving experiences in aging and mental health with the differences in caregiving in these two areas being highlighted. We then present a review of caregiver intervention studies in aging and mental illness and discuss implications of this review for future research. The paper closes with some concluding remarks stemming from our review and an overview of the content found in the remaining nine papers in this special issue devoted to caregiving interventions. Extent and Nature of Family Caregiving The provision of assistance and support by one family member to another is a regular and usual part of family interactions, and is in fact a normative and pervasive activity. Thus, caregiving due to chronic illness and disability represents something that, in principle, is not very different from traditional tasks and activities rendered to family members. The difference, however, is that caregiving in chronic illness often represents an increment in care that goes beyond the bounds of normal or usual care. Caregiving in chronic illness involves a significant expenditure of time and energy over extended periods of time. involves tasks that may be unpleasant and uncomfortable, is likely to be non-symmetrical, and is often a role that had not been anticipated (Biegel, Sales, & Schulz, 1991). The prevalence of caregiving in the United States is high. One might argue that a caregiver is needed for every person with health-related mobility and self-care limitations that make it difficult to take care of personal needs, such as dressing, bathing, and moving around the home. Current estimates indicate that 4% of the non-institutional ized U.S. population under the age of 55 meet these criteria. Over the age of 55, the proportion of persons with mobility or self-care limitations or both increases dramatically; half of the population falls into this category after the age 85 (U.S. Bureau of the Census, 1990). If it is assumed that these individuals require a minimum of one caregiver, such an estimate would yield over 15 million caregivers in the United States. Added to this number would be persons with no mobility problems and who are able to perform most self-care tasks, but who require vigilance and supervision, such as adults with severe and persistent mental illness. Indeed, a recent national survey of caregivers reported that there were 22.4 million households that met broad criteria for the presence of a caregiver in the past twelve months (National Alliance for Caregiving and the American Association of Retired Persons, 1997; Ory, Hoffman 111, Yee, Tennestedt. & Schulz, 1999). Of course, it should be noted, that not all persons who need the assistance of family caregivers actually receive this help for a variety of reasons, including not having family members or having family members who are not willing or are unable to provide care. The provision of care by family members to other family members who become dependent due to physical and/or mental effects of chronic illness is not a new phenomenon. In fact, families in the United States, as well as in other parts of the world, have always provided care to their dependent family members (Hooyman & Gonyea. …