Down syndrome fight complicated by age

Few facilities handle Alzheimer's too, straining families

March 11, 2007|By Cox News Service

It's a good day for Jesse Zanca.

He sits silently on the couch in his mother's living room, staring straight ahead through big glasses. When addressed directly, he grins shyly and gives brief answers to questions. He likes his group home. It's in Stone Mountain, Ga. He likes to eat hamburgers.

Jesse, 37, was once garrulous and sociable, said his mother, Jane. He worked in the kitchen of a nursing home and was engaged to be married.

"Jesse, in his mid-20s, had really come a long way," Jane Zanca said.

Then, at about 26, "some things started to slip," she said.

Jesse lost interest in social activities. He wouldn't talk on the phone. He would start making a snack, abandon it, then start another and another. He couldn't sleep.

Like most people with Down syndrome who live long enough, Jesse was developing Alzheimer's disease.

Scientists have long known of a connection between the two conditions without knowing the specific reasons, said Arthur Dalton, director of the Center for Aging Studies at the New York State Institute for Basic Research in Developmental Disabilities.

Until recently, people with Down syndrome usually died young, before exhibiting the symptoms of dementia. In 1983, the life expectancy of someone with Down syndrome was just 25, according to the National Down Syndrome Society.

Now, better overall health and advanced medical care have more than doubled that life expectancy, keeping many people with Down syndrome alive into their 50s, 60s and even longer. As they grow older, more of the 350,000 Americans with Down syndrome are developing Alzheimer's - and at a younger age and faster acceleration than the general population.

The Down-Alzheimer's combination presents their families with a daunting challenge.

"You go to elder care people, and they don't do developmental disabilities," said Jane Zanca. "You go to developmental disabilities people, and they don't do elder care."

In their exploration of human genetics over the last few years, researchers believe they have identified the link between Down syndrome, a disorder that is the most common genetic cause of mental retardation, and Alzheimer's, a progressive brain disease that destroys a person's memory and mental ability.

Down syndrome occurs when a person's DNA has an extra copy of a particular chromosome known as 21. The abnormality causes the body to produce an excessive amount of a substance that accumulates as plaque in the brains of people with Alzheimer's.

By the time people with Down syndrome are in their 40s, almost all their brains will exhibit some of the changes associated with Alzheimer's, said neurologist Jim Lah of Emory University School of Medicine. That's about 20 years earlier than in the general population.

About 85 percent of autopsies of adults with Down syndrome show the plaque associated with Alzheimer's, said Dalton of the New York research institute.

But people with Down syndrome "end up developing Alzheimer's with virtually 100 percent certainty if they live long enough," said Emory's Lah.

Alzheimer's often seems to strike when someone with Down syndrome is operating at peak performance.

Louise Maier got her first job at age 50 in the bakery of a grocery store. She did so well putting bread into bags that she was promoted to pizza-making. After the store closed, she went to work in a restaurant, folding napkins and rolling up silverware.

She never missed a day, said her sister, Betty Didicher, 65.

Then, a little over a year ago, Maier started crying frequently at work. One day she wandered out into the parking lot and co-workers didn't know where she was.

She began frequently calling her sister from Just People, the Roswell, Ga. group home where she lives, hysterical that someone might try to hurt her.

Now 59, she is on medication to control anxiety. The crying and wandering have stopped, but Maier is no longer able to work, and she is reluctant to participate in activities at Just People.

Becky Dowling, director of Just People, researches resources for Maier as she seeks assistance for her own mother, who has Alzheimer's.

Some days Maier seems lucid and engaged, Dowling said. Other times, she doesn't seem to know where she is.

"Our program is not designed for Alzheimer's," Dowling said.

Eventually, her sister fears, Maier will have to go into a nursing home at a cost of nearly $5,000 a month, if her family can find one that will accept her.

Despite the challenges, Didicher sees a bit of good fortune.

"I think we were very blessed that she was 57 before it kicked in," she said.

Jane Zanca, Jesse's mother, has tried the range of support systems.

She gave up her job as a writer for nine months to take care of him.

Jane Zanca now works as a writer with the federal Centers for Disease Control and Prevention. At 60, she has severe arthritis.

"I have to limit my time with Jesse to what I know I can handle," she said.

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