As more people with Down syndrome age into their 40s, 50s and 60s, the vast majority will develop Alzheimer’s disease.
Their risk of them getting it increases with each decade after 40 years of age, and their overall lifetime risk is more than 90%, according to the National Down Syndrome Society.
Ocala's Marie Kalb and her daughter Gretchen, who has Down syndrome, are dealing with that grim reality.
On a recent Saturday -- as she does every weekend -- Marie Kalb visited her daughter at a Quest Inc. home in Tampa for adults with developmental disabilities.
"Me and you. Buddies!" Marie Kalb told her.
"Bud!" Gretchen answered, sitting in her wheelchair. It's one of their repeated expressions of love, learned many years ago from an old soap opera.
They hugged often.
"I love you, Mom," Gretchen told her.
Gretchen turns 50 in June. She was diagnosed with Alzheimer's in 2013 but had symptoms for years before that.
She had been a cheerful, playful girl and young woman. She learned to read at a first grade level, rode her horse Pokey, swam in the Special Olympics and worked part-time at Publix.
She adored her father, Skip, who died of cancer in 2002. She grieves for him still -- but sometimes doesn't remember that he died.
Gretchen dated a little, under the watchful eye of her parents. And she fell head over heels for Tyler, a teenage character in the sit-com "Life Goes On" that also featured an actor with Down syndrome.
She still has a crush on him today.
"Oh, Mommy," Gretchen said as they sat side by side.
"Oh, Mommy, what?" Marie Kalb asked.
"Tyler."
"You're always thinking about him, aren't you?" her mother said.
"Always," she answered.
Gretchen's mother, at age 73, is now, as always, completely devoted to her.
She said the Alzheimer's diagnosis came after big changes in Gretchen's behavior. Her giggly personality became aggressive for a time.
Gretchen went through multiple group homes and battled COVID-19 and pneumonia.
And as the Alzheimer's progressed, Gretchen lost so many of her hard-won skills. That, especially, is heartbreaking for Marie Kalb.
Now Gretchen misplaces her train of thought from one sentence to the next. She picks up and handles imaginary objects with her fingers.
"It's tough with the special needs, you know," Marie Kalb said. "Parents (have) to deal with that their whole life. But, oh, this is even tougher, you know, right now."
A focus on diagnosis and quality care
The life expectancy for someone born with Down syndrome has improved tremendously thanks to advances in medicine and access to care.
But with longer life comes Alzheimer's disease.
This week the Alzheimer’s Association is bringing together experts, caregivers and service providers at three summits in Florida.
At issue? The diagnosis and care of people with Down syndrome and other intellectual and developmental disabilities who may have dementia. So they’re focused on identifying signs, obtaining an accurate diagnosis, managing symptoms and accessing resources. The first summit was Tuesday in Jacksonville.
The second is 1 to 4 p.m. Thursday, March 20, at Jewett Orthopedic Institute Hospital in Orlando. But people can attend via Zoom.
The third summit is Friday, March 21, at the Area Agency on Aging of Broward County in Sunrise. That meeting also is available through Zoom.
Katie Fahrenbruch, director of community engagement for the Alzheimer’s Association in Florida, said the signs are different for someone with Down syndrome. Those signs are often changes in skills and behavior from their baseline.
And people with Down syndrome are unlikely to self-report their cognitive decline.
"So it’s heavily reliant on the people who are supporting that person with IDD (intellectual and developmental disabilities) to recognize that, hey, something here is changing and we need to dig in to see what that is," Fahrenbruch said.
New challenges
The summit comes amid new challenges for caregivers.
For one, the positive situation of living longer has left some families unprepared. Heather Barnes, executive director of the Down Syndrome Association of Central Florida, said families need to focus on plans for their loved one to outlive them.
Finding memory care facilities that will take an adult with Down syndrome can be hard, Barnes said. And so is finding doctors who aren’t dismissive of their early signs of dementia.
And then there are the cuts to federal funding.
A plan supported by the Republican majority in the U.S. House includes $880 billion in cuts that -- according to an analysis by Politifact and KFF Health News -- would fall heavily on Medicaid, the principal source of healthcare for Americans with Down syndrome.
"But we don’t know," Barnes said, "once those funding cuts happen, what services are going to be cut. Are entire groups of services going to be cut?”
She said the uncertainty is creating a lot of anxiety.
Adults with Down syndrome need specific research on how drugs used to treat Alzheimer’s will affect them. For that, they rely in part on the National Institutes of Health, but cuts have already been announced there, too.
Back at the Tampa home, Marie Kalb said she marvels at the progress in skills and acceptance of kids today with Down syndrome.
"I'm so glad to see that," she said, "but, you know, I know in the back of my mind that Alzheimer's is coming.”
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