Dementia in Down syndrome adults causing caregiver crisis

Most days Craig Cambeis doesn’t talk a whole lot. In fact, words and memories continue to escape the 59-year-old Down syndrome man.

It’s part of the daily struggle for his sister and sole caretaker, Adele Barlow — making sure they share meaningful moments, even as Craig becomes a stranger to the present.

Behind his striking blue eyes and sweet disposition, Craig is battling dementia like so many other Down syndrome adults across the state. His early days started slowly, but now the end seems to be rushing at them.

“It was actually about a year ago when he started, he didn’t remember our names,” Barlow said.

He was once a New Jersey Devil’s hockey fanatic, competitive swimmer, equestrian and gold-medal winner in the Special Olympics. Today, Craig has no interest in those activities, and the skills his family fought so hard to help him master are slowly slipping.

“He could communicate before, say 2 years ago. I could give him instructions and he’d pretty much follow them. And he had his routine, he could dress, and feed himself, and change the TV channels and he can’t do any of that anymore,” said Barlow. “And I would say it’s all occurred within the past year to year-and-a-half where I dress him and I physically brush his teeth for him and I shave him.”

“This is the first generation of people with Down syndrome who have been out in the community and kept with their family,” explained nurse practitioner Leone Murphy. “A lot of people think that most people live in group homes — not true.”

Murphy is considered an expert in this community. She helped open the first health clinic for developmentally disabled adults at the nonprofit Monmouth Arc. Her 45 year-old Down syndrome daughter, Michelle, is part of a first generation whose parents defied doctor’s orders to institutionalize babies born with Downs. Now adults, they face a relatively unknown world of aging with the disability.

“Before, they were usually put into developmental centers and they died much younger. They didn’t have the medical care that we have now — the antibiotics, the preventive health,” Murphy said.

During the mid 1960s, the average life expectancy for a person born with Down syndrome was about 21 years. Today, that number has tripled, according to the National Institute of Health, with many living well beyond. But so too, has the prevalence of dementia. Research from the NIH shows up to 55 percent of Down syndrome adults ages 40- to 49-years-old will be clinically diagnosed. That number increases as they age.

“The reason there’s such a high correlation of the dementia in this population is the amyloid plaque that causes dementia is on the 21st chromosome in all of us. So you and I have two chromosomes, but they have three, so that’s why it starts so early with them,” Murphy said.

“What has not been understood is what happens to those who age with Down syndrome,” said Jane Boyle, a member of the National Task Group on Intellectual Disabilities and Dementia.

But Boyle lived it. Her sister, Ellen, thrived as a cherished member of their Sea Girt community until she died from Alzheimer’s disease at age 52. Ellen played sports, volunteered, held a job, and kept a jam packed social calendar.

“It was like molasses — whatever the internal process in her brain was. So one by one all these wonderful activities just sort of fell away,” Boyle said.

We met Boyle, Murphy and Barlow at the first-ever statewide support group meeting for caretakers of those with Down syndrome and dementia.

Boyle and Murphy — whose sister and daughter were best friends — created the group hoping to share what they’ve learned. With few doctors specializing in the middle-aged population, they are, as they did all those years ago, relying on their own instincts. Boyle helped write the first and only national handbook on the topic. Because both the minds and bodies of adults with Down syndrome age at a quicker rate, families are often unaware of the signs.

“They told me that, most likely you are going to be faced with really difficult decisions and it will probably come on very quickly and very rapidly. They said probably in the next five years you will start seeing changes in her,” said New Jersey Parents of Adults with Developmental Disabilities founder, Laura Kelly.

“Unfortunately, some of the families that I worked with, they thought the behaviors they were seeing — the being difficult, being stubborn, obstinate, putting their clothes on over pajamas, not being able to do tasks like take a shower by themselves, brush their hair, those kinds of things — but really it was the dementia,” Murphy said.

“If you know any family who has developmental disabilities in their family — it’s what they think about all the time,” said Paul Aronsohn, New Jersey’s ombudsman for Individuals with Intellectual or Developmental Disabilities and Their Families.

Aronsohn’s role in the newly created ombudsman’s office is to understand how to help these families.

“I figure that I’ve connected with, in my first eight and a half months, about 150 families. And those are families with children, those are families with adult children, those are families trying to deal with a whole slew of issues from housing and employment to transportation,” Aronsohn said.

With few resources available, Aronsohn says families fear for the future. And unlike most parents, those with developmentally disabled children actually pray to outlive their own.

“The focus has been on the younger people who are coming out of high school and transitioning into society and living independently, and that’s great because that wasn’t available when Craig got out of high school — all important,” Barlow said. “But now we have this whole new generation or whatever that’s aging and it didn’t happen before. Down syndrome people didn’t live as long as they’re living now so maybe this is new. The medical profession, even now, isn’t helpful. I feel like I’m very much on my own to figure out what’s going on, read what I can.”

Still, Barlow is hoping to find the brighter side of a dark diagnosis.

And in the fleeting moments when the light shines through Craig’s eyes, Barlow knows she can’t stop the dementia from stealing her brother’s memories, but she’s determined to make each one count.

Aging and the Unknown: Adults with Developmental Disabilities” is a four-part series that dives into the complexities and challenges for those aging with intellectual and developmental disabilities.

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