Independence can be an important part of living with Alzheimer’s disease. But some caregivers may be inadvertently undermining the independence of those they care for by underestimating their abilities to carry out everyday tasks.
Those are the findings of new research from the University of Alberta in Canada, where a study led by by psychologist Tiana Rust shows that making patients with Alzheimer’s too dependent on their caregivers may make them less likely to contribute to daily activities and, in the process, diminish their sense of self-worth.
Often caregivers are only trying to help by assuming many of the day-to-day tasks that the person with Alzheimer’s needs. But when the caregiver assumes too many duties, it can create a so-called “dependency support script,” Ms. Rust says, in which those with Alzheimer’s are not encouraged to do things for themselves.
As a result, the person with Alzheimer’s may feel less inclined to get involved with tasks like helping out in the kitchen or getting dressed that they may well be capable of, particularly in the earlier stages of the disease.
“When we create this excess dependency that doesn’t need to be there, this is a problem,” Ms. Rust said. “If we’re able to maintain and promote independence to the degree permissible by the disease, that’s important.”
For her study, she observed several caregivers and Alzheimer’s patients as they prepared a meal together. While many of the patients were clearly capable of helping out with some of these duties, she noted that some of the caregivers assumed they were not able to do them and did the tasks themselves.
One woman, for example, was surprised to learn that her husband did many tasks at the day-care center he attended. She had been doing these for him at home for months, unaware that he was capable of doing them.
“People with Alzheimer’s disease have varying abilities, so it’s important to base (caregiver) interactions on the actual abilities of the person,” she said. “Observing the person and gauging what they’re capable of before jumping in and supporting the dependence of the person is definitely important.”
Another important strategy, she notes, is to assist the person by breaking up tasks into smaller, more manageable steps.
“The task we had given the caregivers and the residents to do was set the table, make grilled cheese sandwiches, mix juice and clean up afterwards. All of those tasks are quite big in themselves, but they can all be broken up into small activities,” she said. “These are all small tasks that these people with Alzheimer’s disease were still capable of doing, even though they might not have been able to do the full task.
“It’s a hard role as a caregiver to try to gauge what the person can do, to know what the patient is capable of, how much they can break up these tasks. But these were all things that the caregivers mentioned in the interviews, so they’re definitely wanting to promote their independence.”