As people with Down syndrome live longer lives, a new diagnosis of dementia is becoming more prevalent creating new challenges for caregivers.
JACKSONVILLE, Fla. — There’s a new problem facing thousands of families on the first coast and southeast Georgia. As people with Down syndrome live longer lives, they’re being diagnosed with Alzheimer’s at a 50% higher rate than a person without Down syndrome.
A new program is starting soon to help families with that diagnosis.
The Arc Jacksonville received a 1 million dollar federal grant for a program that will help families take care of their children with intellectual differences when they get an Alzheimer’s diagnosis or start showing signs of the disease, specifically those with Down syndrome.
There is a large population of people with Down syndrome in our area and local businesses and organizations are supportive of their independence. We see it through the Buddy Walk and Bitty & Beau’s.
The Arc Jacksonville’s CEO Kari Bates explains that the goal of their program is to continue their independence even with an Alzheimer’s diagnosis while training families as caregivers.
The program will mainly use occupational therapy. Bates hopes to be a local solution to a new and growing issue.
“People with Down syndrome are at least 50 percent more likely to develop dementia in their lifetime. So a lot higher rate than what you see in the average population,” Bates said. “The reason why this is somewhat – I say – a new problem is because if you think about it, in the early 80s, people with Down syndrome didn’t live into their 50s and 60s.”
“I think with anyone, dementia is a tough diagnosis to face. There is always a lot of denial,” Bates said. “But families are committed to caring for their loved ones and sometimes you know to their own wellness becomes an issue.”
The pilot program is funded for 3 years, but Bates already has plans to keep it going considering there are hundreds of thousands of people with the diagnosis and their life expectancy continues to increase.
The Arc Jacksonville has been working with people with Down syndrome since the 1960s when life expectancy was 10 years old.
The program is set to begin in spring 2023, but families can sign up on an interest list by calling The Arc’s main office at (904) 355-0155.