Alzheimer’s disease has an unusual distinction: It’s the illness that Americans fear most: more than cancer, stroke or heart disease.
The rhetoric surrounding Alzheimer’s reflects this. People “fade away” and are tragically “robbed of their identities” as this incurable condition progresses, we’re told time and again.
Yet, a sizable body of research suggests that this narrative is mistaken. It finds that people with Alzheimer’s and other types of dementia retain a sense of self and have a positive quality of life overall, until the illness’s final stages.
“Do our abilities change? Yes. But inside, we’re the same people,” said John Sandblom, 57, of Ankeny, Iowa, who was diagnosed with Alzheimer’s seven years ago.
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Dr. Peter Rabins, a psychiatrist and co-author of “The 36-Hour Day,” a guide for Alzheimer patients’ families, summarized research findings this way: “Overall, about one-quarter of people with dementia report a negative quality of life, although that number is higher in people with severe disease.”
“I’ve learned something from this,” said Rabins, a professor at the University of Maryland. “I’ve seen that you can be a wonderful grandparent and not remember the name of the grandchild you adore. You can be with people you love and enjoy them, even if you’re not following the whole conversation.”
“There are many things that caregivers, families and friends can do — right now — to improve people’s lives,” said Dr. Allen Power, author of “Dementia Beyond Disease: Enhancing Well-Being” and chairman for aging and dementia innovation at the Schlegel-University of Waterloo Research Institute for Aging in Canada.
Focus on Health: One notable study analyzed lengthy discussions between people with dementia, caregivers and professionals at six meetings of Alzheimer’s Disease International, an association of Alzheimer’s societies across the world.
Those discussions emphasized the importance of physical health: being free from pain, well-fed, physically active and well-groomed; having continence needs met; being equipped with glasses and hearing aids; and not being overmedicated. Cognitive health also was a priority.
Social connections: Being connected with and involved with other people is a high priority for people with dementia. Based on research conducted over several decades, Rabins listed social interaction as one of the five essential elements of a positive quality of life.
Adapt communications: Not knowing how to communicate with someone with dementia is a common problem.
Laura Gitlin, a dementia researcher and director of the Center for Innovative Care in Aging at Johns Hopkins School of Nursing, offered these suggestions in an article in the International Encyclopedia of Rehabilitation: Speak slowly, simply and calmly; make one or two points at a time; allow someone sufficient time to respond; avoid the use of negative words; don’t argue; eliminate noise and distraction; make eye contact but don’t stare; and express affection by smiling, holding hands or giving a hug.
Address unmet needs: Which needs are commonly unmet? In a study published in 2013, Rabins and colleagues identified several: managing patients’ risk of falling (unmet almost 75 percent of the time); addressing health and medical concerns (unmet 63 percent); engaging people in meaningful activities (53 percent); and evaluating homes so that they’re safe and made easier to navigate (45 percent).
Respect autonomy and individuality: In a review of 11 studies that asked people with dementia what was important to them, they said they wanted to experience autonomy and independence, feel accepted and understood, and not be overly identified with their illness.