In the 1960’s the average life expectancy for someone with Down syndrome was 10-years old. Today, people with the disorder routinely live into their 50’s and 60’s. This has created a first generation of elderly people with Down syndrome who are encountering a new set of a challenges.
Adults with Down syndrome experience something researchers call “accelerated aging,” as they tend to confront aging-related maladies much earlier than those without Down syndrome. In particular, they have a higher prevalence of Alzheimer’s. More than 50 percent of those with Down syndrome who live into their 60’s have Alzheimer’s. In comparison, about 10 percent of people without Down Syndrome over 65 live with the disease.
Why this disparity? People with Down syndrome have an extra copy of chromosome 21 which carries a gene that is linked to the overproduction of a protein that causes plaque to build-up on brain cells. This same excess plaque is present in those with Alzheimer’s.
The increasing number of people who have both Alzheimer’s and dementia is challenging existing support networks. There are very few places they can turn for care and support and socialization.
Day programs that provide structure for many with Down syndrome can become too demanding and overstimulating as they age. And residential or day programs for people with Alzheimer’s are typically not tailored for people who also have Down syndrome.
Ariel Sansom, director of development and programs at the Down Syndrome Network of Arizona said over the years she heard an increasingly common concern from family caregivers: My child is 48 years old and he can’t participate in his day program activities or with his friends anymore. He can’t keep up with the pace. What are the options?
There were not many options, she said. So she helped launch the Aging Matters program in 2016 specifically to address the needs of older people with Down syndrome.
Earlier this year the program was awarded an Innovations in Alzheimer’s Caregiving Award by the Family Caregiver Alliance for tailoring dementia care to adults with Down syndrome.
Aging Matters hosts monthly events for their 250 participants in the Tempe area. They focus on exercise, nutrition and socialization, which all promote brain health. Activities include zumba and personalized exercise programs, as well as music classes. Some events are just for fun, such as a day out at the mall or a night at the bowling alley.
Aging Matters also connects caregivers who are experiencing these new challenges through information sessions and conferences with health experts.
The program is partnering with Arizona State University and the Barrow Neurological Institute to learn more about the impacts of aging on people with Down syndrome. Sansom said that it’s unknown why some with Down syndrome experience dementia, for example, while others do not. “Not much is understood about accelerated aging,” she said.
Rebecca Howell is an undergraduate student at the University of Maryland, College Park studying History. She is also an intern with Memorywell.