By Judith Graham
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 this Alzheimer’s 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.
They appreciate relationships. They’re energized by meaningful activities and value opportunities to express themselves. And they enjoy feeling at home in their surroundings.
“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.
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,” admitted Rabins, a professor at the University of Maryland. “I’m among the people who would have thought, ‘If anything happens to my memory, my ability to think, I can’t imagine anything worse.’
“But 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.”
The implication: Promoting well-being is both possible and desirable in people with dementia, even as people struggle with memory loss, slower cognitive processing, distractibility and other symptoms.
“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 chair for aging and dementia innovation at the Schlegel-University of Waterloo Research Institute for Aging in Canada.
Of course, the final stages of Alzheimer’s disease and other types of dementia are enormously difficult, and resources to help caregivers are scarce — problems that shouldn’t be underestimated.
Still, up to 80 percent of people with dementia are in the mild and moderate stages. Here are some elements of their quality of life that should be attended to:
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 was also a priority. People wanted “cognitive rehabilitation” to help them learn practical techniques for promoting memory or compensating for memory loss.
Up to 40 percent of people with Alzheimer’s disease suffer from significant depression, and research by Rabins and colleagues underscores the importance of evaluating and offering treatment to someone who appears sad, apathetic and altogether disinterested in life.