Foster 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.
But fear, discomfort and misunderstanding routinely disrupt relationships once a diagnosis is revealed.
“The saddest thing that I hear, almost without exception, from people all over the world is that family, friends and acquaintances desert them,” said Sandblom, who runs a weekly online support group for Dementia Alliance International, an organization for people with dementia that he co-founded in January 2014.
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.
Also, understand that people with dementia perceive things differently.
“You have to understand that when you have dementia you lose a lot of your natural perceptions of what others are doing,” Sandblom said. “So, a lot of us get a little nervous or suspicious. I think that’s a natural human reaction to knowing that you’re not picking up on things very well.”
Address Unmet Needs
Needs that aren’t recognized or addressed can cause significant distress and a lower quality of life. Rather than treat the distress, Power suggested, try to understand the underlying cause and do something about it.
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
Rabins called this “awareness of self” and listed it among the essential components of a positive quality of life. Sandblom called this “being seen as a whole person, not as my disease.”
At the Alzheimer’s Disease International meetings, people spoke of being listened to, valued and given choices that allowed them to express themselves. They said they wanted to be respected and have their spirituality recognized, not patronized, demeaned or infantilized.
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.
None of this is easy. But strategies for understanding what people with dementia experience and addressing their needs can be taught. This should become a priority, Rabins said, adding that “improved quality of life should be a primary outcome of all dementia treatments.”
Kaiser Health News, a nonprofit health newsroom whose stories appear in news outlets nationwide, is an editorially independent part of the Kaiser Family Foundation. KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation and coverage of aging and long-term care issues is supported by The SCAN Foundation.