People with Down syndrome can now reach their 60s and sometimes 70s but that comes with a disadvantage: they face the odds of having dementia, cardiac issues
By Deborah Jeanne Sergeant
The life expectancy for people with Down syndrome has increased over the past century.
In 1900, the most parents could anticipate for their Down syndrome child was about a decade. As recently as the 1980s, that life expectancy increased to only 28 years.
Currently, someone with Down syndrome can reach their 60s and sometimes 70s.
One big reason the lifespan has grown is that physicians can surgically correct congenital heart disease, which affects about half of babies with Down syndrome.
Along with the good news of longer lifespan comes the knowledge that the medical community hasn’t kept up with how to treat people with Down syndrome for health problems that largely affect people age 65 and older, including dementia.
“I think there is still a lot of work that needs to be done,” said Alyssa Johnston, executive director at GiGi’s Playhouse in Cicero. “That starts with education for med providers while still in school and continuing education once they’re out of school. People are living longer and the field is changing. I’ve heard that medical curriculum doesn’t have a lot of education about people with Down syndrome or other disabilities.”
Memantine, prescription medication that slows the progression of dementia, has limited testing among people with Down syndrome as to its efficacy in that population. Johnston noted that many people with Down syndrome have cardiac issues. Older adults tend to need more medication to treat age-related health problems.
“There can be interactions with medications they’re already on with cardiac issues they already have going on,” Johnston said. “You want to make sure there are no interactions.”
But who will be advocating for seniors with Down syndrome? From her experience in other work settings where she took people to the hospital, “you have to advocate harder for the care they need, especially if there’s a verbal communication barrier,” Johnston said. “It’s not the fault of medical providers but it’s outside the scope of what they’re equipped to handle.”
Johnston is also concerned about the exclusion of people with Down syndrome in medical trials.
“One hundred percent, we’d like to see that change,” she said. “It starts with organizations like ours getting out the word that how important people with Down syndrome are to our community.”
Brittany Goodrich, director of the Kennedy Willis Center at Pathfinder Village in the Edmeston, near Cooperstown, also wants to see better inclusion.
“Until very recently, most clinical trials excluded adults with Down syndrome,” Goodrich said.
She hopes to see more inclusion as “with adults with Down syndrome, they go through aging prematurely. Dementia can happen sooner. A lot of the pharmaceutical companies don’t want to test things with early onset as they catch people too late.”
She stands against the concept that people with Down syndrome isn’t an “accurate reporter” when involved in a medical trial. Shorter stature and possible different medication absorption rate are a couple of factors that can affect prescription efficacy for people with Down syndrome.
“For the first time ever, adults with Down syndrome are living longer than their parents,” Goodrich said. “The type of care and who will care for them are huge concerns for their family. Even when you think about when to make the decision: how long can I do this? The transition for someone with Down syndrome to have dementia can be traumatic. They may need to move sooner into memory care as going into a different environment can be scary.”
She said that there are still neurology reports that say, “dementia due to Down syndrome” but “that’s not a thing,” Goodrich said. “There is higher prevalence, but that’s not causal. A 30-year-old shouldn’t have that diagnosis. It’s using Down syndrome to overshadow everything else. There may be other things going on that are treatable and even reversible.”
Her organization is working with care coordination systems to provide comprehensive aging and dementia support.
“I want people to know that they can call us about these things,” Goodrich said.