The message of a physician who’s working to transform the care of people with dementia could perhaps be boiled down to this: Don’t write them off too quickly; in fact, don’t write them off at all.
Dr. G. Allen Power, an internist and geriatrician, was in Baton Rouge recently to serve as keynote speaker for the 20th annual education conference presented by Alzheimer’s Services of the Capital Area.
Power has authored a book, “Dementia Beyond Drugs: Changing the Culture of Care,” which won the 2010 Book of the Year Award from the American Journal of Nursing.
“We’re very quick to disempower and stigmatize” those with Alzheimer’s, Power said. “I think that’s one of the barriers to early detection.”
Is it possible for a person with Alzheimer’s to still “have meaning and growth?” he asked. “I think it is.”
A clinical associate professor of medicine at the University of Rochester, Power sits on the board of The Eden Alternative, an international nonprofit organization based in Rochester, N.Y., that “seeks to remake the experience of aging around the world,” according to its website at http://www.edenalt.org.
“The bulk of our work to date has been in de-institutionalizing the culture and environment of today’s nursing homes and other long-term care institutions,” the website says.
At St. John’s Home, also in Rochester, N.Y., Power has helped implement the philosophies of the Eden Alternative organization, such as moving from the use of contracted agency nurses and aides to permanent assignments for most full-time staff and greatly reducing staff turnover by things like on-site day care and education initiatives.
At some point in his career, Power said he had to “throw away everything I’d been taught (about Alzheimer’s), it was so stigmatizing.”
“We cannot ignore what people are saying just because they have dementia,” he said.
His outlook dispels much of the fear and stigmatization surrounding the disease. Power began, he said, to listen to new voices.
Among them are authors who have dementia, such as Richard Taylor, a psychologist who wrote, “Alzheimer’s from the Inside Out” and Christine Bryden, a single mother diagnosed with the disease in her 40s, who wrote “Dancing with Dementia.”
Some of the more memorable quotes Power referred to are Taylor’s words — “If I call you ‘Mom’ or ‘Dad,’ I am probably not confusing you with my mom or dad. I know that they are dead. I may be thinking about the feelings and behaviors I associate with mom or dad. I miss those feelings; I need them. ...”
In her book, Bryden wrote, “It seems that people with dementia are making a journey from logic to emotions to feelings and finally to spirituality.”
She also suggested that families use the term “care partners” instead of “caregivers.”
With the latter term, “We’ve become caregiver and sufferer. You become depressed. We learn helplessness,” she wrote for caregivers.
Power suggested to his audience at the Pennington Biomedical Research Center, where the conference was held, to think of the relationship with a loved one with dementia as a collaboration “on the journey with dementia.”
“We always have something to receive from the person with dementia,” he said.
Power had suggestions for the staff of nursing homes, as well as for family members, but the advice intersected.
“Nursing homes simply mirror the values of society,” he said.
To help create a positive place for a person with dementia to live and to reduce their stress, Power suggested these basics of being with someone with dementia.
Well-being can be created by giving the person with dementia security — “knowing and trusting the people that provide care, being treated with modesty and respect” — and helping them feel connected to the world, Power said.
“Do something to create meaning in the moment and be where they are,” he said.
Simple changes can make a huge impact.
Take the issue of people with dementia “wandering,” in their environment or away from it.
“The term is judgmental,” Power said. “Let’s change the term to ‘searching.’ ”
They’re not searching for a specific thing, he said, explaining they’re looking for a “place where they feel connected.”
People with dementia aren’t “fading away,” Power said. “They are still there but harder for us to access them.
“We grieve the loss of the person who was, but it’s a new normal,” Power said.
A family member might get upset when a loved one with Alzheimer’s doesn’t like to do the things they used to, he said. “Don’t give up.”
Reminiscing, too, “can be good, but it can be bad,” Power said. “The person is still there, whether they can name people in a photo or not.”