Predictors and Outcomes of the End of Co-Resident Caregiving in Aging Families of Adults with Mental Retardation or Mental Illness

Abstract

Aging mothers who lived with an adult child with either mental retardation (n = 308) or mental illness (n = 73) were studied prospectively over a three-year period to determine the antecedents and consequences of the end of co-residence between the aging mother and adult child. Different factors predicted the end of co-residence for the two sub-samples, but the consequences of this transition with respect to maternal burden and depressive symptoms were similar for the two groups. There was a high level of contact between the aging parent and adult child with disabilities even after the period of co-residence ended. Recently, caregiving for the elderly has been conceptualized as a career with three phases: (a) co-resident caregiving, (b) institutional placement, and (c) bereavement (Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995; Pearlin, 1992). It has been argued that caregiving is a transformative experience for the caregiver because transitions into and out of this role are accompanied by identity shifts as well as changes in well-being (Pearlin, 1992; Skaff, Pearlin, & Mullan, 1996). Although the career model was conceptualized in the context of caregiving for an elderly relative with Alzheimer's disease, it may have broader applicability to other forms of family caregiving. A less common but increasingly recognized type of family care is provided by aging parents who have continuing caregiving responsibilities for a son or daughter with disabilities (Lefley, 1987; Seltzer & Krauss, 1994). The emergence of this type of caregiving is the result of several trends, including the increased longevity of persons with disabilities (Eyman & BorthwickDuffy, 1994), the aging of the baby boom generation which includes a population bulge of persons with disabilities (Greenley, 1990; Janicki & Wisniewski, 1985), and social policies of deinstitutionalization and enhanced community care which thrust parents into a primary caregiving role (Fisher, Benson, & Tessler, 1990; Fujiura & Braddock, 1992; Lefley & Wasow, 1994; Thompson & Doll, 1982). It is now the norm for parents to be actively involved in providing or overseeing the care of their adult child with disabilities. Most of these adults will ultimately outlive their parents. Although for some families, the end of caregiving occurs when the parents die, for others the transition to nonparental care occurs while the parents are still alive and the adult moves away from the parental home. Guided by the conceptualization of caregiving as a career, we examine one transition of the caregiving career for aging parents of adult children with disabilities. This transition is analogous to the move from Phase 1 to Phase 2 in the Aneshensel et al. (1995) model, or from co-residence between the parent and the adult with disabilities to the period in which the adult lives elsewhere (though not necessarily in an institutional setting, as in the Aneshensel et al. model). Although there is a growing understanding of the nature and impacts of co-resident parenting of adults with disabilities (Greenberg, Seltzer, & Greenley, 1993; Heller & Factor, 1994; Pruchno, Patrick, & Burant, 1995; Seltzer, Greenberg, & Krauss, 1995), very little is known about the factors leading to the end of this phase or about parental adaptation to the post-caregiving phase. Therefore, our goal in this paper is to investigate the factors that predict the end of coresident caregiving for mothers of adults with disabilities and the consequences of this transition for maternal feelings of subjective burden and depressive symptoms. Background Parental Caregiving for Adults with Mental Retardation or Mental Illness Research on parental caregiving for adults with disabilities has revealed that there are both frustrations and gratifications associated with this role (Pruchno et al., 1995). The balance of positive and negative adaptations depends in large part on the specific disability of the adult child, the level of societal acceptance or stigma, and the formal and informal support systems available to or created by parents. …