By Charlene N. Rivera-Bonet | Waisman Science Writer
At a Glance:
- Caregiving Stress Accumulates Over Time – Mothers of children with developmental disabilities experience long-term stress, adapting for many years but showing signs of ‘wear-and-tear’ starting around age 65, affecting their physical and mental health.
- Aging Patterns Differ – Compared to mothers of children without disabilities, those who provide lifelong caregiving show higher vulnerability to chronic health issues and psychological distress as they age.
- The Need for Long-Term Planning & Support – As both generations (parents and children) age together, researchers stress the importance of early planning for future caregiving arrangements and strengthened policy and services to support aging parents of adults with developmental disabilities.
Being a parent of a child with a developmental disability can be a source of both joy and stress, particularly for mothers. Yet as a result of decades of parenting, mothers’ health, mental health, and cognition can start showing signs of ‘wear-and-tear’ around the age of 65, according to a new study. This points to a need to strengthen supports for parents of adults with developmental disabilities through older age.
The study from the Lifespan Family Research Lab at the Waisman Center, University of Wisconsin-Madison, traced the life course trajectories of physical and mental health and cognition in mothers of children with developmental disabilities by pulling data from two longitudinal studies, the Adolescents and Adults with Autism (AAA) and the Midlife in the United States (MIDUS). AAA included mothers of autistic children, while MIDUS included mothers of children with a wide range of developmental disabilities, and mothers of typically developing children who were used for comparison. This comparison group served as a benchmark for what health looks like through life for mothers of children without a disability.
Mothers typically take on primary caregiving roles for their children with disabilities. This can be a source of stress that continues into older age as developmental disabilities last a lifetime, and most parents continue to provide care and support for their children with disabilities during adulthood and even when the adult children live away from the parents’ home. The present study found that these parents were more likely to experience depression, psychological distress, anxiety, more physical health symptoms, and chronic conditions compared to parents of children without developmental disabilities.
“We’ve been interested in whether these families have a dominant pattern of adaptation (or coping with stress well) or a dominant experience of a ‘wear-and-tear’ phenomenon,” explains Marsha Mailick, PhD, emeritus vice chancellor for research and graduate education, and senior author of the study. “And what we see here is both,” she adds. Mothers adapt for many years, but they start showing signs of ‘wear-and-tear’ starting around age 65.
Using the MIDUS data, the researchers estimated trends in mothers’ physical and mental health over a 60-year period of time. They found that the trajectories of the two groups – mothers of children with developmental disabilities and mothers of children without – differed with respect to chronic conditions, negative affect, psychological well-being, and episodic memory starting at age 65-70, with mothers of children with developmental disabilities displaying higher vulnerability. This, the study suggests, likely reflects the cumulative effects of years of stressful parenting.
“Research over many decades has documented the challenges of having a child with a developmental disability – including how chronic stress impacts parents’ health. Our study offers additional understanding of the timing of these impacts across parents’ lives, shedding light on when families may be in greater need of support,” explains Robbie Dembo, PhD, the lead author of the study.
One surprising result for the researchers was that both study groups, mothers of autistic children from the AAA study, and mothers of children with a range of developmental disabilities from the MIDUS study, showed the same pattern in midlife and older age regardless of the diagnosis of their child.
The age when mothers’ start showing signs of ‘wear-and-tear’ is around the time when their sons or daughters with disabilities also start showing worsening health symptoms, according to a previous study published by the group. “As a lab, we’re deeply interested in understanding how both generations age together,” says Leann DaWalt, PhD, director of the University Center for Excellence in Developmental Disabilities (UCEDD) and study author. “There’s more research to do to try to tease apart the causality. But I think the important point is that there is an inflection point for mothers, and it is occurring around the same time that we’re seeing change in their sons or daughters.”
These patterns of ‘wear-and-tear’ reflect an average, and do not define every family as each one undergoes their own journey, the authors clarify. “Substantial variation in life course trajectories exists across families, highlighting their heterogeneous characteristics. Identifying the factors driving these differences—an aim of our forthcoming research—will enhance our understanding of family-level variation and inform the design of more responsive and equitable policies and services tailored to diverse needs,” says Jinkuk Hong, PhD, one of the study authors.
“Healthy aging and a long life are hopes and goals that everyone shares for their family members. We have a collective responsibility to ask difficult questions, carefully study the data, and reach an understanding of autism during midlife and old age. These are stages of life that have largely been unexplored for people diagnosed with autism and it is time to make this our priority – for their sake and for their family members,” Mailick says.
Their advice is to do long-term planning like discussing a will and having a successor or caregiver for their children with a disability before this point. The research also speaks to the need to strengthen policy and services for supports that target parents of adults with a developmental disability.
THIS WORK WAS SUPPORTED BY GRANTS FROM THE NATIONAL INSTITUTE ON AGING (R01 AG08768, P01-AG020166, U19-AG051426), THE NATIONAL INSTITUTE OF MENTAL HEALTH (R01 MH121438) AND AUTISM SPEAKS (#7724). SUPPORT ALSO CAME FROM THE NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT FOR THE WAISMAN CENTER’S IDDRC CORE GRANT (U54HD090256, P50HD105353). THE ORIGINAL MIDUS STUDY WAS SUPPORTED BY THE JOHN D. AND CATHERINE T. MACARTHUR FOUNDATION RESEARCH NETWORK ON SUCCESSFUL MIDLIFE DEVELOPMENT.