By JUDITH GRAHAM
CHICAGO — Researchers from Kansas are offering a rare glimpse into the interior world of Alzheimer’s patients with a new study that will be presented at a major international conference in Chicago this week.
The study, while small, is highly suggestive. Key findings indicate that patients — even those who may seem deeply disoriented or cognitively impaired — dislike being patronized or treated as if they were children.
This suggests that a sense of adult identity remains intact in people with dementia, even when an individual isn’t able to remember how old she is, where she is, what day it is or which family members are alive and present.
How people experience Alzheimer’s disease, especially in its latter stages, is a mystery because those who suffer from this illness lose the ability to articulate their thoughts and feelings.
In the Kansas study, researchers tried to get around this hurdle by videotaping 20 elderly men and women living in three nursing homes during the course of a day as aides helped them bathe, brush their teeth, dress, eat and take their medications, among other activities.
Researchers then analyzed the tapes frame by frame, assessing how the manner in which staff interacted with patients influenced patients’ behavior and the quality of care.
They discovered that when nursing aides communicated in a kind of baby talk for seniors — using a high-pitched sing-song tone, making comments like “good girl,” diminutives like “honey,” and using language that assumed a state of dependency (“are we ready for our bath?”) — Alzheimer’s patients were twice as likely to resist their efforts to help.
The old men and women would turn or look away, grimace, clench their teeth, groan, grab on to something, cry or say “no” — behaviors that can be read as indications of distress at being patronized or infantilized, said lead researcher Kristine Williams, an associate professor at the University of Kansas School of Nursing.
“Communication can really impact care,” she said.
The observation applies equally to people with Alzheimer’s disease being cared for at home, who make up the vast majority of the estimated 5.2 million men and women living with this illness in the U.S., other experts suggest.
“What this new study does is really validate anecdotal evidence and folk wisdom about how we should communicate with people with dementia,” said Dan Kuhn, director of the professional training institute at the Alzheimer Association’s Greater Illinois chapter.
Twenty years ago, a very different vision prevailed, Kuhn explained. Then, it was thought that if an Alzheimer’s patient seemed disoriented — if a woman thought she was in her 20s, for instance, or that she was speaking to her brother instead of a son – – it was important to point out the mistake and correct her, lest she regress.
Today, the approach is to “enter into a patient’s reality instead of forcing that person into our reality,” Kuhn explained. “Don’t remind them of their disability. Don’t tell them they’re wrong. And by all means, don’t be condescending or critical.”
Kathleen Ustick, who oversees Alzheimer’s services at Lutheran Life Communities in Arlington Heights, Ill., gives an example. If an old man with dementia asks repeatedly for his mother, who is deceased, she tells staff to listen closely to his tone of voice and try to read his body language.
If the man seems agitated or panicked, “I think the meaning behind his words is, ‘I don’t feel safe right now.’ Mom represents safety, security, love. And the message for staff is, we have to help calm this person down,” she said.
A good way to do that would be to say something like, “No, I haven’t seen your mother. But why don’t you stay with me for a while?” Ustick suggested.
Assuming that the patient is being childlike misses the meaning that underlies his words. “I firmly believe we should never treat (men and women with dementia) like infants. We may be their safety net, the person who interprets the world to them, but they are adults,” she said.
Originally published by JUDITH GRAHAM Chicago Tribune.
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