Aging Parents with Dual Caregiving Responsibilities: Caring for An Adult Child and Spouse with Disabilities

Purpose: The purpose of this study was to investigate the well-being of aging parents who have caregiving responsibilities for both an adult child with a developmental disability or mental illness and for a spouse with an age-related disability.

Background: There is a growing body of research documenting the toll on aging parents caring for an adult son or daughter with major mental illness or a developmental disability. However with the aging of the population, many of these caregivers will face the dual challenge of caring for both an adult child with a disability and an elderly spouse with aging-related disabilities. The goal of this study is to examine the physical and psychological well-being of this emerging group of aging caregivers who have both intra-generational as well as intergenerational family caregiving responsibilities.

Method: The 2003- 2007 wave of the Wisconsin Longitudinal Study was used to conduct this analysis. The WLS is a study of 10, 317 randomly selected men and women who graduated from the Wisconsin high schools in 1957, and a randomly selected sibling of these graduates. We selected aging men and women with a son or daughter with a serious mental illness or developmental disability and who were married to a spouse requiring care. 151 respondents in the WLS had these dual caregiving responsibilities. The 151 respondents were compared to two groups: (1) 214 married men and women who had a son or daughter with a disability but whose spouse were non-disabled, and (2) 1276 men and women who were married to a spouse with a disability but did not have a child with any form of disability. There was no significant demographic difference between the three groups. A one way ANOVA with planned contrasts was conducted to compare the groups on measures of depression, psychological well being, somatic health, anxiety and social participation.

Results: Caregivers with dual caregiving responsibilities experienced significantly higher levels of depression and anxiety, reported a higher number of somatic health symptoms, lower levels of mastery and self acceptance, and had lower rates of social participation than caregivers living with a disabled spouse but whose children were non-disabled. In addition, in comparison to respondents who had a child with a disability but whose spouse was non-disabled, caregivers with dual caregiving roles had significantly higher levels of depressed mood and anxiety, lower levels of mastery and self acceptance, and a greater number of somatic health symptoms.

Conclusions: The study calls attention to the cumulative toll of caregiving when aging parents have responsibilities for both the care of an adult child as well as a spouse with disabilities. A spouse's disability may add to the stress of caregiving not only because of the increased burdens of care but also it may represent the loss of emotional support from the spouse. Our findings suggest that this population of aging families with multiple caregiving responsibilities is among the most vulnerable and in need to support and services from providers.