As people with Down Syndrome grow older, their chances of obtaining Alzheimer's increase, new research says

Advances in health care have helped people with Down syndrome live longer, healthier lives. But that increased longevity also brings a new challenge: a significantly higher risk of developing Alzheimer's disease.

For Gina El Hassan, the issue is personal. Her brother, Rudolph Vincent Perez, has always loved music and dancing. The 56-year-old shares a close bond with El Hassan, who was 13 when he was born.

"When he was born, I was 13, so he became my baby doll," El Hassan said. "So for me it was great."

Decades ago, people with Down syndrome typically lived into their 30s, often before the age when Alzheimer's disease commonly develops. Today, longer life expectancy means more individuals are reaching ages associated with dementia.

El Hassan said she first noticed warning signs years ago.

"Every 10 or 15 years, he has psychological testing done, and when we went, the psychologist told us he was already seeing signs," she said.

Now, she says her brother sometimes forgets where things belong and has withdrawn from activities he once enjoyed. The changes remind her of their mother, who also developed Alzheimer's disease.

"He stopped wanting to go in the car. He got scared of cars," El Hassan said. "He also got withdrawn, stopped watching TV. Little things like that that my mother suffered."

According to the Alzheimer's Association, people with Down syndrome face a substantially higher risk of Alzheimer's disease as they age. Some studies estimate a lifetime risk as high as 90%, with most cases appearing in a person's 50s.

By comparison, the lifetime risk for Alzheimer's in the general population is estimated at about 20% for women and 10% for men.

Keith Gibson with the Alzheimer's Association said brain changes linked to dementia can begin much earlier in people with Down syndrome.

"They want to be proactive because usually an individual who has Down syndrome, their brain will start changing and they're developing symptoms at age 40," Gibson said.

He said research focused specifically on people with intellectual and developmental disabilities is essential.

"When we say 'a world without Alzheimer's and all other dementias,' we need to look at all communities," Gibson said. "The Down syndrome community is one that we need to be more intentional about because their needs are different."

For caregivers like El Hassan, the uncertainty can be overwhelming.

"I'm 70, and I worry," she said. "Of course, I worry if I get it, but I worry more about him. How to take care of him and deal with it again. I don't want him to go through something else."

Down syndrome affects how the brain and body develop, but people with Down syndrome can live healthy and fulfilling lives with supportive care.

Resources for families are available through the National Task Group on Intellectual Disabilities and Dementia Practices.