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Researchers tout benefits
Getting patients to start exercising and keep going is one of the biggest hurdles in rehab. Most patients probably know they would be better off taking walks and eating vegetables, but lying on the couch and eating chocolate may be much more enticing. Changing that mindset can certainly be a challenge. But what if your patients have a disability that not only affects their bodies but also their minds?
For people with developmental and intellectual disabilities, staying healthy can pose an even more difficult problem. They may not understand the importance of exercising, and even if they do, they may not know how to use fitness equipment. They may not have anyone to encourage them to go out for a walk or to drive them to a fitness facility. Or they may spend their days with caregivers who don’t believe exercise is necessary for a person with such a disability.
That mindset is prevalent but untrue and potentially damaging to patients, says Tamar Heller, PhD, director of the Rehabilitation Research and Training Center on Aging with Developmental Disabilities at the University of Illinois at Chicago. The center recently received a five-year, $3.75 million grant from the U.S. Department of Education’s National Institute on Disability and Rehabilitation Research to continue its research on serving the needs of people with developmental disabilities.
People with disabilities such as Down syndrome or cerebral palsy have high health-risk factors because they tend to be obese and sedentary and often have poor access to health care. "Many people with developmental disabilities are in danger of developing secondary conditions at earlier ages than other people," Heller says. "Often health professionals are not that knowledgeable about specific syndromes and what’s associated with them. For example, if someone has Down syndrome, some of the aging processes may be different from someone with autism. We’re starting to see that there are different trajectories based on syndromes as people age," she adds.
The reason is an increased life span for this segment of the population. Fifty years ago, the average life expectancy of a person with Down syndrome was nine years. Half of children born with the disability died within the first year. Now, people with Down syndrome live to an average age of 56.
Recent studies show that people with intellectual disabilities have an average life span of 65, not that far behind the general population at 70. "There have been so many treatment advances for people with developmental and intellectual disabilities," Heller says. "People are living in better settings. More people are in the community; they’re not being sent to institutions. They’re being served in rehab settings. This is very much of a growing population. In many rehab settings, we’re finding that more and more of the people we’re serving are older."
Because of the dramatic improvements in life expectancy, there will be an estimated 1.2 million people with intellectual or developmental disabilities by 2024 as the last of the baby boom generation (those born in 1964) reaches the age of 60. The increased life span also means that people with disabilities are starting to outlive their parents, who tend to be the primary caregivers.
Heller notes that 76% of those with developmental disabilities live with family members and that 25% of those family caregivers are older than 60. "There is a clear, urgent need for both greater breadth and depth of information regarding aging and the needs of persons with these disabilities," she says.
Some of the center’s research has focused on developing a health promotion program and curriculum. Heller and her colleagues developed a 12-week exercise and education program that has resulted in big improvements in fitness, knowledge, motivation, depression rates, and life satisfaction. "When they first come in, they have no idea how to use any of the equipment. People with Down syndrome have low blood pressure, so they come in with little energy. By the end, they’re just really roaring," she says. "But we find that they go back to their place and not much happens. So we’re working on developing the program in day or residential programs so they will continue exercising."
The program offers 12 weeks of activities specifically designed for people with developmental disabilities. Three one-hour sessions per week are offered to help participants achieve the following:
The curriculum focuses on stages of change: awareness, knowledge, action planning, and follow-through. "We work on the theory of self- efficacy. You have to feel that you can make the changes, and you have to feel that these changes can have a desired outcome for you," Heller says. "At the psychological level, we operated on that. You also have to provide social and environmental support, and you have to get rid of some of the barriers that people have."
Researchers studied 32 participants ages 30 to 55 who went through the 12-week program and compared them to an 18-member control group. Participants reported a variety of barriers to exercise, including cost (47%), lack of energy (47%), transportation (40%), no one to show them how to exercise (40%), lack of access to fitness centers (40%), boredom with exercise (37%), and exercises too difficult (37%).
But after the program, participants lost an average of 2 pounds and reported less pain in daily activity, increased confidence, more positive attitude for exercise, and lower rates of depression. Cardiovascular function, strength, and endurance improved, and participants had lower triglycerides. The results will be published in an upcoming issue of the American Journal on Mental Retardation.
"It doesn’t work to say, Go to the Y.’ They don’t know how to use the equipment. There really need to be some special adaptations," Heller points out. "It’s important that whatever we do, fits with their lifestyle and is something they like. It’s got to be fun. There has to be a lot of group camaraderie."
One creative way the researchers came up with to help the participants learn the exercises was to use a digital camera. "We took pictures of them exercising, and they go home with a whole workbook that shows everything they did," she says. "They also go home with a video of themselves exercising. We make it very simple. We tried to think about what you need for people who have cognitive limitations. We worked with people who had moderate to mild disabilities, and they were able to learn the concepts."
The researchers also are working on educating staff members who work with disabled patients about the importance of health promotion. "In one of our studies, the biggest predictor of whether people would exercise or not was the attitude of their staff about whether they would benefit from it," Heller adds. "One study on people with cerebral palsy found that half of the staff who worked with those patients didn’t believe they would benefit from exercise. Those were the people who didn’t exercise.
"Some people think if you are disabled — and even physicians may be afraid — and maybe in a wheelchair that you’re not going to benefit from exercise," she continues. "We still see a lot [of patients] who are pessimistic [about whether] they are going to do it, or they worry because they’re so overweight. We do screen out people who have major problems, like heart problems, but the rest can do it; and they will do it if we help them."
Heller and her colleagues say they plan to use the grant to develop tools to assess the degree to which communities are environmentally friendly to this population. They also plan to look at ways to promote more accessible environments.
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