Caregiving Over the Life Course: The Experience of Multiple Caregivers

Purpose: This study explores a unique caregiving situation by investigating the effect of spousal disability on the wellbeing of parents who also have a son or a daughter with chronic developmental disabilities or severe mental illness.

Background: A growing body of research has documented the effect of having an adult son or daughter with major mental illness or developmental disability and its effect on an aging parent's physical and psychological wellbeing. Since individuals with disabilities are living longer, it is likely that with increased age many parental caregivers would experience dual challenges of caring for both an adult child with a disability and an elderly spouse with age-related disabilities. The goal of this study is to examine the physical and psychological well-being of an emerging group of aging caregivers who have both intra-generational as well as intergenerational family caregiving responsibilities.

Method: The data is drawn from the Wisconsin Longitudinal Study (WLS), a study of a random sample of 10,317 men and women who graduated from the Wisconsin high schools in 1957 and their randomly selected brother and sisters. Having met a number of criterions and following random sampling strategy, 318 respondents with an adult son or daughter with disability and 1846 respondents who do not have children with disabilities are selected for analytic purposes. The respondents are followed across two time points in the life course: when they were in their 50's and again in the 60's. Primary analytic strategies are: ANCOVA, logistic and linear regressions using dummy variables.

Results: The results show that having a child with a disability not only doubles the risk of having a spouse with a disability in midlife, but also increases the risk of having a spouse develop a disability over time. The cross sectional analysis found independent or additive effects of a spouse and a child's disability on physical and psychological wellbeing across both the time points. It also found evidence of wear-and-tear effects of long term caregiving for a child with a disability. The study shows the negative effects of transition to spousal care on the wellbeing of caregivers who have an adult child with disability, such that following transition they experience poorer wellbeing on several measures, compared to those who never transitioned or who never had a disabled spouse. Finally, the study also shows the buffering effects of prior levels of social support following transition to spousal disability, such that prior levels help to mitigate the negative effects of transition, especially among respondents who have a child with a disability.

Conclusion: The study opens a new horizon of research by looking at the unique life circumstances of families who are tied between multiple caregiving situations, whose incidence is likely to increase in the near future. It brings into attention the vulnerabilities of aging caregivers to children with disabilities who are at risk of experiencing multiple caregiving stressors with age and calls for social service agencies to explore and address the unique needs of aged parents tied to lifelong caregiving roles.