DIMENSIONS Winter 1998

SPOTLIGHT ON RESEARCH: ASSESSING QUALITY OF LIFE IN PEOPLE WITH ALZHEIMER'S DISEASE

by Cheryl Dawes

When weighing the benefit of any treatment for Alzheimer's disease, the bottom line is whether it improves quality of life for the person with dementia. But the bottom line isn't the same for everyone--each person has his or her own definition of what makes life satisfying based on his or her own perspective, says Dr. Rebecca Logsdon, assistant professor of psychiatry and behavioral sciences. So, she points out, it's important that people with dementia have a way to rate their own quality of life, rather than have someone else do it for them.

In a five-year study funded by the National Institute on Aging, Logsdon is investigating a new questionnaire that enables a person with mild to moderate dementia to report on his or her own quality of life. The study, which will shed light on the wide variability in quality of life, is following a group of people in the early stages of dementia for five years. It expands on Logsdon's earlier work, sponsored by the national Alzheimer's Association, in which she and her colleagues Drs. Linda Teri and Sue McCurry developed the questionnaire and tested the instrument in pilot studies.

"We worded the instrument very simply and made the responses very easy to do," explains Logsdon. "We have very explicit directions for the interviewer who administers the questionnaire about how to ask the questions and, if the subject is confused, how to explain the question." The instrument assesses a variety of factors that contribute to quality of life by asking the person to rate his or her satisfaction in such areas as physical functioning, energy level, mood, living situation, financial status and memory. It also explores areas such as how the person feels about his or her ability to do chores around the house and to take part in pleasant activities. "We try to focus on the present," stresses Logsdon. "How do you feel about your family relationships today; not how have you felt about them in the past."

The assessment is conducted as an interview and the person with dementia is given a copy of the questions to look at as the interviewer asks them. For each question, the interviewer specifically asks whether the rating is poor, fair, good or excellent, so the subject needs only pick out a single word.

Logsdon's assessment can help clinicians identify problems. "We can see whether a person's overall quality of life is low because she is unhappy with her living situation, or she feels a lack of meaningful activity in her life, or she isn't happy with her marriage," explains Logsdon. "Those are all things we can help the person with dementia or the caregiver change."

Another important aspect of the study is the comparison of how individuals with dementia rate their quality of life and how their caregivers rate it. Caregivers use the same questionnaire to rate the quality of life of the person with dementia. Comparing responses, Logsdon and her colleagues can evaluate how closely the two agree. "I've found that the caregiver usually rates the quality of life of the individual with dementia lower than that person rates it," says Logsdon. However, in most cases, she says, there is agreement between the person with dementia and the caregiver on which factors receive high and low ratings. The quality of life assessment is administered to both the caregiver and person with dementia at regular intervals over time. Keeping track of how responses compare allows Logsdon and her colleagues to rely more heavily on the caregiver's assessment as, over time, the person with dementia becomes unable to answer the questions.

Logsdon's quality of life instrument is one of only a handful of such assessment tools that have been developed in an area that is brand new to Alzheimer's research. Because Logsdon's instrument is designed to be thorough, yet easy to complete, she's hopeful that it will be useable for a long time into the course of the disease. Logsdon's quality of life measure is unique because it incorporates both the person with dementia and the caregiver, instead of relying only on the report of the caregiver.

Logsdon's measure has recently been selected to be part of an assessment battery to be used in a national multi-site study administered by the Alzheimer's Disease Cooperative Study Unit headquartered at the University of California, San Diego. "This type of large study is very powerful because it includes people from all parts of the country so the sample is more heterogeneous than from a single location," Logsdon points out. "And, when you have many different researchers testing something, it gets a lot of scrutiny. They're very particular about what they do and how they do it."

"There are many different treatments for AD that are becoming available now and we need to be able to evaluate whether they are actually beneficial,"says Logsdon. "Traditionally we have used objective measures, like improvement on a test score. But, in the end, two points on a test score really don't matter if the person with dementia isn't feeling better. The way I'm assessing quality of life shifts some of the responsibility for saying whether treatment is helping onto the shoulders of the person who is being treated. It creates a different perspective--rather than looking only at minute changes, it also looks at the big picture."

If you or anyone you know may be interested in participating in this study, or for more information, please call Amy Moore at 206-685-9169.


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