Vanderbilt Kennedy Center (TN UCEDD, IDDRC, LEND) Addressing Needs of Family Caregivers of Aging Adults with Down syndrome

May 26, 2017


The increased life expectancy of adults with Down syndrome has changed the way caregiving occurs in families. Unique circumstances associated with these changes suggest adjustments may be necessary in family support policies and interventions. 

In a paper published in the Journal of Policy and Practice in Intellectual Disabilities*, Vanderbilt Kennedy Center (TN UCEDD, LIDDRC, LEND) investigators explore the growing issues of family caregiving for aging adults with Down syndrome. Robert Hodapp, Ph.D., Vanderbilt professor of Special Education, Richard C. Urbano, Ph.D., Vanderbilt research professor in Pediatrics, and Meghan Burke, Ph.D., BCBA-D, assistant professor of Special Education at University of Illinois Urbana-Champaign (and former VKC trainee!) report.  

Forty years ago, individuals with Down syndrome lived into their 30s, and their parents often outlived them. Today, many individuals with Down syndrome are living into their 60s. They also are more likely to live at home and to have older parents who are experiencing age-related challenges of their own.

"Health conditions such as visual and hearing impairments, epilepsy, and dementia often begin when adults with Down syndrome are in their late 40s," said Hodapp. "This means that many of their parents are in their 70s and 80s when their son or daughter's health may begin to decline. What's more, the few studies we have on aging and Down syndrome also show that, around the same time, declines occur in cognitive-adaptive functioning and in active involvement in the community through vocational and related activities.

While we don't yet have a clear view of this time in life for families, it seems different for families who have aging adults with Down syndrome compared to those with other types of intellectual and developmental disabilities. It often means that siblings may be assuming caretaking in these families at earlier ages."

This triad of premature aging of adults with Down syndrome, parents who are older, and unique family caregiving dynamics together brings forth many implications for practice and policy. In their paper, Hodapp, Urbano, and Burke outline several recommendations. Among them, they suggest that future planning for individuals with Down syndrome and their families occur earlier in the lifespan.

"Because health and functional declines begin when adults with Down syndrome are in their late 40s-and when their parents are in their 70s and 80s-future planning may need to occur while adults with Down syndrome are in their 30s and their parents are in their 60s," said Burke. "By planning earlier for the future, family members with Down syndrome have a voice in the planning and gain more practice in making informed later-life decisions about their own lives. We know that many families of individuals with intellectual disabilities do not pursue future planning. We think that is a mistake. Without future planning, individuals might lose their benefits or end up in crisis situations that could have been avoided."

The researchers also suggest that family support policies might need review and adjustment to meet the needs of families with aging adults with Down syndrome. 

"At this point in time, we are seeing different versions of the 'sandwich generation,'" said Burke. "The sandwich generation refers to offspring who are simultaneously caring for their own children and their parents. In these families, we see siblings caring for their own children, their aging parents, and their aging brother or sister with Down syndrome. This has major implications for family support policies that really are only beginning to consider siblings, or more often, completely overlook them. We need to consider the needs of these families and recognize that current policies cannot be viewed as one-size-fits-all. We need to further explore how funding and services can be adjusted."

"This research on aging in Down syndrome is so important to families, and is part of an array of Vanderbilt Kennedy Center research and other activities related to Down syndrome," said Elise McMillan, J.D., co-director of the VKC University Center for Excellence in Developmental Disabilities (UCEDD), director of Community Engagement and Public Policy, and senior lecturer in Psychiatry and Behavioral Sciences. "Dr. Sasha Key has conducted research on aging in Down syndrome using brain imaging methods, and Dr. Paul Newhouse led a Nicholas Hobbs Discovery project  evaluating a nicotinic treatment of age-related cognitive decline in Down syndrome-and several Center researchers focus on language interventions, reading instruction, and more, all benefitting children with Down syndrome."

The VKC UCEDD launched the website Health Care for Adults with Intellectual and Developmental Disabilities: Toolkit for Primary Care Providers (, an online resource that offers health care providers, patients, and families information to improve health and behavioral health care for adults with intellectual and developmental disabilities. The section on Health Watch Tables includes the Down Syndrome Health Watch Table, which can be downloaded. 

*Hodapp, R. M., Burke, M. M., Finley, C. I. and Urbano, R. C. (2016), Family caregiving of aging adults with Down syndrome. Journal of Policy and Practice in Intellectual Disabilities, 13: 181-189. doi:10.1111/jppi.12153

Courtney Taylor is VKC associate director of Communication and Dissemination.