Adaptation to a spouse's disability by parents of adult children with mental illness or developmental disability

Abstract

Objective: This study examined the effects on well-being of a spouse's disability among aging parents already serving as caregivers of adult children with severe mental illness or a developmental disability.

Methods: The study sample consisted of two groups of participants in the Wisconsin Longitudinal Study of 1957 high school graduates and their randomly selected siblings-those who had a child with a disability (N=227) and a matched comparison group of parents who did not have a child with a disability (N=1,463). The participants were surveyed in 1992-1994 and 2004-2006, and participants with a spouse with a disability in 1992-1994 were excluded from the analysis. The effect of multiple caregiving roles was investigated by using regression analysis.

Results: Parents of adult children with severe mental illness were more likely than either parents of adult children with developmental disabilities or the comparison group to report that their spouse developed a disability in the early retirement years. The experience of caring for a spouse with a disability and the experience of caring for an adult child with disabilities had additive effects in eroding the well-being of older adults. Parents of adult children with severe mental illness in general had the lowest levels of well-being.

Conclusions: As they move into their retirement years, aging parents who care for children with long-term disabilities are likely to experience multiple caregiving responsibilities. Service providers must address the needs of these aging parents and develop interventions to help them cope and plan for their future.