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Promoting Independence in Those Who Have Alzheimer's
In The 36-Hour Day, one of the first books on Alzheimer's from the caregiver's perspective, Nancy Mace and Peter Rabins devote several chapters to coping with the symptoms of Alzheimer's disease. "Some people fall when they first get out of bed," they write. "Have the person sit on the edge of the bed for a few minutes before walking."
These chapters are about daily routines and problems. "If all of the person's socks will go with all of his slacks, he doesn't have to decide which is right to wear with what... Many families have told us that a bath seat and a hand-held hose greatly reduce the bath time crisis."
When the first edition of this book came out in 1981, it filled a great void. Information on the symptoms of the disease was sparse and guidance on managing them even sketchier. Throughout the 1980's, other publications appeared, filled with informal observations about symptoms and coping strategies. Toward the end of the decade, more and more formal research began to focus on this aspect of Alzheimer's disease. In contrast to the biological research described earlier, the low-tech, behavioral approach centers as much on family members and caregivers as on the patients themselves. The rationale is that if the people who care for Alzheimer's patients know how to cope with symptoms of the disease, they can reduce the degree of disability associated with it.
Current studies are looking at two kinds of caregiving strategies: those that help the patient maintain independence in daily activities as long as possible and those that help prevent disturbing behaviors.
Independence. Dressing, preparing simple meals, performing other household tasks: These are all things that many Alzheimer's patients can still do in the earlier stages of the disease. "If we go out," said Letty Tennis in her journal, "I still can fix my face and hair perfectly but I forget basic steps and go by a little piece of paper like do eyes, cheeks, lips, etc.... I never cook when alone...but I still can microwave."
Maintaining independence has obvious advantages: The longer the patient can function independently, the better his or her quality of life and self-esteem. Strategies that increase or maintain independence as long as possible also lower the level of stress for the spouse, child, or other caregiver.
Researchers are experimenting with several methods to slow the loss of independence. Some are looking for ways to improve cognitive functions. For instance, one research team has used mental stimulation exercises for one hour each day in an attempt to improve cognitive abilities. So far, the Alzheimer's patients who do these exercises show improvement in comparison with a control group. Moreover, the caregivers in the group who did the exercises reported lower stress levels. Researchers are now testing mental exercises in group settings outside the home.
Other studies are testing ways to improve patients' functional abilities. This term encompasses the ability to carry out the so-called activities of daily living (ADLs), such as dressing and eating, as well as the more complex instrumental activities of daily living (IADLs). The latter include tasks like shopping and cooking.
Some findings show promise. Techniques that have been successful in small studies of getting dressed include having the caregiver demonstrate what to do, so that the patient can mimic the action (the technical term is "modeling"). Another technique is laying out clothes in the order that they should be put on ("stimulus control"). Still another is "prompting." Verbal prompts are statements like, "Pick up the shirt. Put your arm in the sleeve." Physical prompts are when the caregiver uses touch to show the patient which arm to use.
Researchers are now extending these strategies to other activities, such as bathing and feeding. One of the most intriguing results of such studies is the effect the strategies have on other aspects of Alzheimer's disease. Improved functioning seems to go along with a significant improvement in the behavioral problems that afflict Alzheimer's patients and families.
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