Chester County program aids patients with early-onset dementia

Nela Baker and Claudia Sequeira, a program assistant at Adult Care of Chester County, were playing a matching game called Memory.

It involved turning over cards with pictures on them - a grandmother, a clown, a windmill - in pairs and turning them facedown again. The object was to remember where the cards were and match pairs.

Baker's failing memory had brought the two small, slightly built women together in a new program - likely the first of its kind in the region - for people with early-onset dementia. Officials at the adult day-care agency in Exton started the program last month because they believe a dark-haired, physically fit client like Baker has little in common with the creakier, gray-haired people in their 80s who typically populate such programs.

Dementia experts say they are seeing more younger people with Alzheimer's disease and other forms of dementia as baby boomers age and doctors become more aware that these brain diseases can strike before age 65. Dementia that strikes before retirement age can be especially devastating for families still raising children and trying to work. Few special programs exist.

The announcement that famed University of Tennessee women's basketball coach Pat Summitt, 59, had Alzheimer's raised the profile of early-onset dementia.

The Delaware Valley chapter of the Alzheimer's Association estimates that 294,000 people in this region have Alzheimer's and that about 5 percent of them had early or young onset or symptoms before age 65.

At Adult Care of Chester County that recent afternoon, Sequeira cheerfully bent the rules so her patient would win. Again and again, Baker turned over the same cards. She sometimes tried to match different pictures. But, when the game was over, she had found all the pairs and Sequeira declared her the winner. Baker wanted to play again.

At home in Glen Mills, Baker probably would have just watched television, said her husband, Barry. He wanted her out of the house not only to give himself a break, but to give her some stimulation and social connection. He picked Adult Care of Chester County because he thought his wife needed more activity than she would get in programs geared toward the aged. "I wanted a place where they could really stimulate her," he said.

Technically, Nela Baker, who just turned 72, might not qualify as an early-onset patient. She was diagnosed with frontotemporal dementia, which affects language skills and executive function more than memory, about five years ago and had symptoms before that. She barely speaks now, but is alert and physically strong.

She is the program's first, and so far only, patient. Others are in the pipeline. The staff says Baker is too active to fit in its three groups for older people with dementia.

While there are support groups for younger patients and their families, Claire Day, vice president of constituent services for the Delaware Valley chapter of the Alzheimer's Association, said she knew of no other day programs for young-onset patients or special programs in nursing homes.

Carol Steinberg, executive vice president of the Alzheimer's Foundation of America, said she had heard of only a handful of special programs in the nation.

One of them, a day program at the Sid Jacobson Jewish Community Center on Long Island, was the inspiration for the new effort in Chester County. Connie Wasserman, assistant executive director, started it in 2005 when she had little to offer a 36-year-old client with dementia. She now has 19 people - the youngest is in his 40s - in her program.

The group is hardy enough to play basketball and do aerobics. They like to listen to Led Zeppelin and the Beatles, not Jimmy Dorsey. Most importantly, many were forced to quit their jobs and still feel a strong need to work, so the center added a vocational component to the program.

Their families often are dealing with more difficult financial problems than those of older patients, and they may still have children in high school or college.

The younger patients are a handful. They're stronger than people in their 80s and many have frontotemporal dementia, which can cause more behavioral problems than Alzheimer's. "It's a very, very challenging group to work with," Wasserman said. "It's not like the little old lady who just keeps saying the same thing over and over again."

Wendy Walsh, a nurse who is director of staff education at Adult Care of Chester County, visited the Jacobson center before starting the local program. It was clear that younger patients had different interests, activity levels, and taste in food and music than older people. She said the program, which costs $77 for an eight-hour day, will need to attract 10 clients to break even.

CEO Pat Shull said that, in the past, some younger people with dementia have been put off by the age of other clients, which averages about 80. "They'd come in and take a look at all the seniors and say, 'I'm out of here.' "

Nela Baker and Sequeira do tai chi and dancing. They made cookies the day they played Memory. Baker participated in a complacent, tentative way. She stared at a stranger intensely, her eyes not quite vacant but deep and disconnected.

Nela, who immigrated from the Ukraine as a child, met Barry Baker at a dance in 1960. She raised three children, worked in a department store, and then sold real estate. She collected Russian stamps and learned to quilt.

"She was very talented," Barry Baker said. "She was always interested in so many things."

Now, she doesn't even play computer solitaire. "She seems to have lost interest in most everything," her husband said.

He has help at home three days a week and takes her to the day program twice weekly. He has to watch her constantly during the remaining hours. She leaves the refrigerator open, forgets to turn off the water in the sinks, gets dressed at 2 a.m. to make breakfast. His exhaustion shows.

Just as many preschoolers fuss about going to day care, Nela isn't enthused about going to the day program, her husband said. "She doesn't want to go there," he said, "but once she gets there, she's fine."