Caregiving Challenges:

The Need to Expand Support for Adults with I/DD

and their Caregivers

 As life expectancy for all adults in the US has increased, so has life expectancy for adults with Intellectual and Developmental Disorders (I/DD). Although adults with I/DD still have slightly lower life expectancies than the general population, they are now living significantly longer than just a few decades ago, and many adults with I/DD can now expect to live as long as the general population. One of the greatest gains in life expectancy has been for people with Down syndrome. Life expectancy for these individuals has increased from an estimated nine years in 1929 to nearly 60 years today.

The expansion of life for adults with Down Syndrome has been a remarkable achievement but it has brought with it new, and in some cases unexpected, issues for family caregivers. For parents of adults with Down Syndrome, it has brought care responsibilities late into their life, a challenge that is often multiplied by the high prevalence of dementia among adults with Down Syndrome.

According to the Alzheimer's Association, those affected by Down syndrome have a greatly increased risk of developing a type of dementia that's either the same as or very similar to Alzheimer's disease. The National Down Syndrome Society reports that about 30% of people with Down syndrome who are in their 50s, and about 50% of people with Down syndrome in their 60s, have Alzheimer’s dementia.

This rate of occurrence is significantly higher than in the general population, where 5% of the approximately 5 million Americans with Alzheimer’s have younger/early-onset (Alzheimer's that affects people younger than age 65) and 11.3% of people aged 65 and older have Alzheimer's dementia.

In the eleventh episode of When I’m 64, “Caregivers of Adults with I/DD,” we explore this complex issue with both caregivers and experts. Paula Gann, a caregiver to her daughter, Kyle, and co-facilitator of a Down Syndrome Connection of the Bay Area support group for family members with Down Syndrome and Dementia, speaks about the immense difficulty she experienced in advocating for a dementia-capable home to be developed in the San Francisco Bay Area.

“It's been an uphill battle because the state of California has really not begun to deal with aging in the population of the intellectually disabled.” In the past, this population of people “didn't get old,” says Paula. “So now they are getting old and nobody's doing anything about it.”

Paula’s frustration with the slow pace of change in face of this new reality resonates with Kirstin Rains, an independent dementia care trainer based in the Bay Area. She specializes in training caregivers of adults with Down syndrome or other intellectual or developmental disabilities.

One of the biggest challenges Kristin encounters is identifying which of her clients are “actually going through some changes, because it's something that we've never seen before.” People with intellectual and developmental disabilities “didn't live into their older years. So the fact that we're starting to see folks that are aging, which is a good thing, means we're also starting to see those diseases that come along with aging, including dementia, and so there's a lot of work to be done in our community and preparing people for what’s to come.”

Advancements in medicine and care have made it possible for people with I/DD to live longer than ever before, progress that is rightfully welcomed and celebrated. That progress has come with new and difficult care challenges. These are challenges that society has not yet fully embraced, but will need to in order to support both the I/DD community and their family caregivers.