Caregiving Issues: Covering the Spectrum From Detection to End of Life

Abstract

In the past decade, there has been tremendous growth in the research focusing on family caregiving, particularly among those caring for a relative with Alzheimer disease (AD) or another form of dementia. Studies have primarily been descriptive, documenting ways in which caregivers differ from noncaregivers or ways in which caregivers of patients with AD differ from those caring for relatives with other psychiatric (e.g., schizophrenia) or medical (e.g., cancer) diseases. A recent review by Schulz and Martire echoes what prior reviews found, namely, that dementia caregivers are at greater risk for psychiatric disorders and symptoms (particularly depression and anxiety), as well as self-reported negative health effects, than demographically similar caregivers of elders with primarily physical (not cognitive) disorders. Ory and colleagues reported similar findings and also commented on the impact of relationship of the caregiver to the care recipient. They emphasized the need for more research on differences in the kinds of negative outcomes experienced by spouses compared with adult children, who assume very different roles in the caregiving process. Although this literature has led to many valuable insights regarding the impact of family caregiving on both mental and physical health, there are some notable limitations that have only recently begun to be addressed. First, most of the research before 2000 focused on non-Hispanic whites, most of whom were middleaged or older women caring for parents, spouses, or1 parents-in-law. Persons of color, men caregivers, and other individuals (e.g., adult grandchildren or close friends) were not routinely recruited for studies despite evidence of their increasing assumption of caregiving roles. Second, few studies focused on the impact of caregiving on actual physical or mental health problems or biologic markers of physical or mental health status. Rather, most rely on self-reported mental or physical health status, which can be subject to measurement error, compared with use of more objective methods of psychiatric evaluation such as diagnostic interviews and/or results of laboratory tests or confirmed medical diagnoses. One of the few exceptions to this is the literature on the prevalence of depressive diagnoses, and depressive symptoms, in family caregivers; both have been documented to occur to a greater extent in caregivers compared with noncaregivers. Most studies report 30%–50% prevalence of depressive diagnoses and even higher rates of self-reported depressive symptoms among caregivers even across ethnic group comparisons. Third, although there is a growing body of information about advance directives and end-of-life care in the caregiving literature, there have been few systematic studies of how end-of-life decisions are actually made in this population and what factors might influence family members in one direction or another on this matter. Finally, relatively few theoretically based intervention studies, using a randomized clinical trial meth-