Innovative programs for people with Alzheimer's
By: Barbara Basler Source: AARP Bulletin Today Date Posted: September 2005
The woman wore a plain housedress and a big apron, its pockets stuffed with plastic checkers. Head down, eyes blank, she shuffled aimlessly around the activity room.
Cameron Camp, a research psychologist who was visiting this assisted living home in Kentucky, watched the 70-year-old woman for a moment. Then, he recalls, "I went up to her and gave her one of our books—the one on Gene Kelly, the dancer—and asked her to please read a page."
He pauses, remembering the woman and the skeptical staff—and the very next moment.
"She took the book and read aloud—clear as a bell," Camp says with a smile. "A shocked staffer turned to me and said, 'I didn't even know she could speak. That's a miracle.' "
Camp heads the Myers Research Institute in Beachwood, Ohio, and his cutting-edge work with patients in all stages of Alzheimer's has left him improbably upbeat—because he sees miracles like this day after day.
His research is part of a sea change in the care of Alzheimer's patients who are in the later stages of the disease: "Ten to 15 years ago these people were institutionalized, and their care involved physical or chemical restraints," says Kathleen O'Brien, vice president of program and community services for the Chicago-based Alzheimer's Association, which, with the National Institutes of Health, has helped fund Camp's work.
"Today," she says, "more than 70 percent of those with Alzheimer's are cared for in the family home, and we talk about controlling the disease and enhancing daily life for those who have it."
Alzheimer's, the most common form of dementia in people over the age of 65, affects 4.5 million Americans. An irreversible brain disorder, the disease robs people of their memory and eventually impairs most of their mental and physical functions.
"We can't stop cell death from Alzheimer's," Camp explains. "But at any stage of dementia there is a range of capability. If you give people a reason to get out of bed, activities that engage them and allow them to feel successful, they will be at the top of their game, whatever it is."
Camp, 53, began his research 10 years ago when he looked at the activities developed for young children by the educator Maria Montessori, whose "method" is followed today in Montessori schools around the world. There, children learn by manipulating everyday objects like balls, seashells and measuring spoons in highly structured activities that engage children but rarely allow them to fail.
Camp adapted these kinds of exercises for older people with dementia, tailoring them to the individual's background and interests, and found he could draw out the person inside the patient.
"Suddenly, they just wake up, come alive for the moment," he says.
That happened to Mary Anne Duffy's husband when they took part in Camp's research. James Duffy, 77, has Parkinson's disease and dementia and is confined to a wheelchair in a nursing home in Mentor, Ohio.
"James loved woodworking," Duffy says, "and he liked fixing things, so the researcher brought him a small box to paint, nuts and bolts to put together, puzzles." Before her husband began the activities, she says, he "just sat there, nodding off."
But when he was working a puzzle or painting a box, "James actually smiled—something I hadn't seen for a long time," Duffy says. "And he would talk. That was amazing."
People with Alzheimer's "live in the moment, and our job is to give them as many good moments as we can," Camp says. "We need to be thinking about these people in a new way. Instead of focusing on their problems and deficits, we need to ask what strengths and abilities remain."
People had assumed, for instance, that the woman with the checkers in her apron pockets was too impaired to read. But studies have found that reading is one of the very last skills to fade away. "It's automatic, almost a reflex," Camp says.
"If the print is right," he says as he flips through one of his specially designed books with big, bold letters, many Alzheimer's patients can read.
One goal of Camp's work has been to turn his research into practical how-to guides for professional and family caregivers. Published by the Myers Research Institute, the guides have been translated into Chinese, Japanese and Spanish.
While long-term care residences may have some activities for dementia patients—like coloring in a picture or listening to a story—often they don't have activities "that are meaningful, that call on an adult's past," Camp says. "And even people with Alzheimer's are bored if an activity isn't challenging or interesting."
Much of Camp's research is with residents at Menorah Park Center for Senior Living in Beachwood, which is affiliated with Myers Research. After Alzheimer's patients were given the large-print books that he and his colleagues developed, many could read aloud and discuss the books.
A brief biography of Leonardo da Vinci, for instance, talks about some of his wildly imaginative inventions, like a machine that would let soldiers breathe underwater so they could march underneath enemy ships, drill holes in their hulls and sink them.
"It's a wonderful, wacky idea," Camp says. "Dementia patients react to it just as we do. They love it. They laugh, they shake their heads. They talk about it."
Education Director Lisa P. Gwyther of the Bryan Alzheimer's Disease Research Center at Duke University Medical Center recalls visiting a facility where she saw Alzheimer's patients themselves teaching some of the simple activities they had learned to preschool children. "I was so impressed with the dignity and the purpose and the fun that was observable between the older person and younger child," she says. Camp's work has been rigorously studied in a number of small pilot projects, she adds, "which means this is a reliable, valid method."
At Menorah Park, Camp and his team look at what basic skills remain in those with dementia: Can the person read, sort, categorize, manipulate objects? Then they customize activities for those skills.
"We had one man who loved baseball," Camp says. "We had him sort pictures of baseball players into American and National leagues. Another man who loved opera sorted titles into operas by Puccini and operas by Verdi."
The activities help patients maintain the motor skills needed to feed themselves or button buttons. They also trigger memories, then conversations that connect the patient and the caregiver.
People with dementia won't consciously remember the activity from one session to the next. But, Camp says, "some part of them does remember, and eventually they will get bored. So you can't have them match the same pictures each time."
It doesn't matter if patients make mistakes, Camp adds. "What's important is that they enjoy the process."
Mike Skrajner, a project manager for Myers Research who monitored an Alzheimer's reading group at Menorah Park, recalls one morning when the group was reading a biography of Gene Kelly and came to the part where Kelly tells his father he is quitting law school—to take ballet lessons. "They stopped right there and had a great conversation about how they would react to that news," he says. "It was a wonderful session, and at the end they all wound up singing 'Singin' in the Rain.' "
Camp's research shows that people who engage in such activities tend to exhibit fewer signs of agitation, depression and anxiety.
George Niederehe, acting chief of the geriatrics research branch of the National Institute of Mental Health, which is funding some of Camp's work, says a large study of patients in long-term care facilities is needed for definitive proof of the effectiveness of Camp's approach. But his method could be as helpful to caregivers as it is to people with Alzheimer's, he says, because it would improve "staff morale, knowing they can do something useful for these patients." And that, he adds, would enhance the overall environment for staff and residents alike.
One vital part of Camp's theory—like Montessori's—is that residents need activities that give them a social role, whether it's contributing at a book club or stirring lemonade for a party.
The Menorah Park staff worked with one patient, a former mailman, who loved folding pieces of paper stamped with "Have a Nice Day!" He stuffed the notes into envelopes and delivered them to other residents.
"What we try to do," Camp says, "is let the person you remember shine through the disease, even if it's only a few moments a day."
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