Bay area families cope with older members with intellectual disabilities developing dementia

From The Oakland Tribune in California:

When Tom Gnam was born, the doctors told his parents he would not live past his fifth birthday. Gnam, though, proved the doctors wrong.

The child with the strawberry blond hair and deep blue eyes lived until he was 50, making liars of those doctors in 1958.

"I remember my dad came home from the hospital and he said, 'There's a problem — he has Down syndrome,' " recalled his sister, Anne Lee, of Menlo Park. "Then Tom came home and he was just as cute as could be."

One of 12 siblings, Gnam didn't want for companionship, Lee said.

"We just took him everywhere we would go," Lee said. "If we went to the movies, we would bring him along. If we went swimming, he'd tag along. There weren't many special programs for him back then."

Gnam lived at home with his mother until he was 41. When his mother was no longer able to care for him, Gnam moved to Kainos, which offers residential facilities for adults with developmental disabilities.

Though he flourished during the nine years he lived in the Adult Beginnings home, Gnam began to develop signs of dementia last year. He often began tasks and then got confused, not remembering what he was doing. He had to give up square dancing because he could not repeat the squares he had once known by heart.

Gnam was tested for Alzheimer's disease, which commonly strikes much earlier in people with Down syndrome than other adults. His blood did not contain the marker for Alzheimer's, but his behavior continued to deteriorate. A CT scan would have given doctors more information, but it was impossible to talk him into lying still long enough for the procedure. He could not sit and concentrate at work.

He had to quit going to work at the center's workshop and had to stay at home during the day, where his social contacts were limited.

Gnam died Sept. 21 from pneumonia, a complication of his dementia. He had deteriorated mentally and physically over a two-week period. A CT scan administered during his last days in the hospital, which before had been impossible, revealed he did indeed suffer from Alzheimer's disease.

Gnam's experience is becoming increasingly common in care homes. Medical advances have increased the life spans of people with developmental disabilities such as Down syndrome, and that means that there is a new population of seniors who will need specialized care. New evidence of a link between Alzheimer's and Down syndrome, combined with early aging, another characteristic of Down, means that even some Kainos residents under 60 may need senior care.

To help meet that need, Kainos purchased another home in Redwood City that will be converted to a six-bed residence for seniors with developmental disabilities. It is scheduled to open in March.