Continuities and Discontinuities in Family Members' Relationships with Alzheimer's Patients

Abstract

The central concern in research on families and Alzheimer's Disease (AD) in the past ten years has been to identify factors that place family members at risk for negative outcomes because of their involvement in AD care (Bowers, 1987; Colerick & George, 1986; Liptzin, Grob, & Eisen, 1988; Ory et al., 1985; Quayhagen & Quayhagen, 1988). This research has identified AD family caregivers to be at risk for poor physical health, mental health, and quality of life, when compared with family members who are not caregivers (Kuhlman, Wilson, Hutchinson, & Wallhagen, 1991). Family burden, resources (including social support), and AD patient characteristics and symptoms impact negative family outcomes, although factors that place family members most at risk remain to be specified (Baumgarten, 1989). In all of this research, however, AD patients are assumed to be a demand or a drain on family members. Persons with AD are frequently described as experiencing a loss of self as the disease unfolds (Cohen & Eisdorfer, 1986). Progressive loss of memory, along with personality and behavior changes common to the disease, are thought to overwhelm those with the disease. AD patients are characterized as suffering from a biomedical disorder that severs them from their history and severely restricts their potential in life. The biomedicalization of dementia (Lyman, 1989) has restricted the scope of research to disease progression and biologic processes that give rise to the disease. Research about those who care for demented elders has similarly been restricted by the pervasiveness of the biomedical perspective to the questions about how the disease, in its various stages of progression, impacts family members. Largely unasked, and therefore unanswered, are questions about the lived experience of AD for the person with the disease, the family member's experience of living with and caring for the person with AD, and how qualities of the caregiving environment might influence disease progression (Lyman, 1989). Research on caregivers of AD patients often progresses from the implicit assumption of particular relations between the ill family member and others in the family. One member in the relationship is assumed to be the passive recipient of care, holding less interpersonal power yet imposing demands and burdens. In a parallel way, the caregiving member is assumed to be an active provider, possessing relatively greater interpersonal power, but at risk of negative outcomes because of the burdens and risks experienced. Recent caregiver research suggests that the quality of relations between ill and other family members is complex, and that factors such as centrality of the relationship, personal qualities of both members, and the degree of reciprocity in the relationship may impact outcomes for both the ill and non-ill family members (Walker, Pratt, & Oppy, 1992; Wright, Clipp, & George, 1993). One aim of this investigation was to question the assumption of a fixed relation between the family and the person with AD and additionally to specify the range of relations that were apparent in the day-to-day lives of family members living with a person with AD. As part of a larger study aimed at understanding the experiences of family members who cared for a person with AD over time, we critically examined family members' self-initiated discussion of relations with the person with AD, as well as the content and nature of those relations. Working directly from family members' narratives, we attempted to understand these relations in ways that formal theories, such as exchange or friendship theory, may have missed. We were interested in the whole of the family's experience; what was salient and meaningful for the family members themselves, the difficulties or demands they encountered (Martinson, Chesla, & Muwaswes, 1993) and the skills and practices they developed in living with a person with AD. Through family members' narratives over an 18-month time span, it was evident that relationship issues were paramount to family members in their everyday lives and that qualitatively distinct forms of relations between ill members and other family members were evident. …