New research from Penn State and the Benjamin Rose Institute on Aging finds that caregivers of people with dementia are not listening to what the people they care for want.
The researchers interviewed 256 pairs of people. In each pair, one person had mild to moderate dementia, the other was the caregiver.
The researchers interviewed members of the pairs separately, asking questions related to how much value they place on five core values: autonomy, burden, control, family and safety. For example, one question focused on the level of importance a dementia patient gave to the ability to spend his or her own money in the way he or she wants.
“Our results demonstrate that adult children underestimate the importance that their relatives with dementia placed on all five core values,” said [lead researcher Steven] Zarit. “For example, the person with dementia might think it is very important to continue to be part of family celebrations, but his or her caregiver might not.”
So the caregivers/decision makers aren’t taking into account what the person with dementia values. That’s really sad.
A few years ago I helped write a book titled I Can Still Laugh: Stories of Inspiration and Hope from Individuals Living with Alzheimer’s. My expert co-author was Audette Rackley at the Center for BrainHealth, part of the University of Texas at Dallas (my alma mater, and a current writing client).
The book is based on an intervention called cognitive stimulation, a dry academic name for something rich and human. The intervention supports things the person with dementia can do at any time, rather than trying prop up declining abilities. Helping people with dementia remain productive and connected helps mitigate the disease’s damaging byproduct: depression.
I Can Still Laugh focuses on a group of people with early-onset Alzheimer’s or other form of dementia. The group—mostly men, all professionally successful, all diagnosed in their 50s and 60s–called themselves the Stark Club, for their most dynamic member, whose donation also supported the research. Temple Stark was a loving guy with a big laugh and a sunny attitude who was diagnosed when he was 54 years old, a father of two teenage daughters at the peak of his career as an insurance underwriter. The book’s title is a quote from Temple.