People living with dementia or Alzheimer’s disease cannot all be painted by the same brush.
Both diseases are labels for a spectrum of symptoms that can affect a person and subsequently require diverse treatment and support based on individual need.
“Alzheimer’s disease is not one thing … (it) affects people in different ways,” said Dr. Peter Whitehouse, a professor of neurology at Ohio’s Case Western Reserve University.
Whitehouse was one of three speakers on Monday at a University of Waterloo forum on Alzheimer’s disease, presented by the Murray Alzheimer Research and Education Program.
With so much variation and overlapping between Alzheimer’s and other types of dementia, an individualized approach to treatment and support must be adopted by caregiving communities, Whitehouse said.
“We need a broader approach to health,” he said. “A lot of what keeps people healthy is not just pills and doctors … (it’s) a sense of a community that respects them and creates opportunities for them to continue to contribute.”
Whitehouse has already helped create such a community in Cleveland — the Intergenerational Schools — where seniors and youth are connected and learn together.
Ann Marie Wilson, an advocate for Alzheimer’s, also addressed Monday’s forum. She shared the story of her 75-year-old husband, Carl, who is maintaining healthy and purposeful life despite the progressing illness.
“Carl is anything but frail, and he doesn’t think he’s very old,” she said.
While Wilson and her husband were more fitting of the mould most people have of Alzheimer’s, the following speaker turned that perspective on its head.
Mary Beth Wighton has a very different story.
After years of searching for the cause of her radically changing behaviour and thought processes, she was diagnosed last year — at age 45 — with a frontotemporal dementia, a rare form of the disease.
“I started mumbling to myself, how could this be? I’ve lost my (driver’s) licence. I have dementia. How could this be?” she said of her initial reaction to the diagnosis.
The diagnosis “changed our lives,” Wighton said of the impact on her family, which includes her partner Dawn, 40, and their 18-year-old daughter.
The other two began taking over responsibilities that Wighton could no longer manage. But as a family they have embraced the challenge and live good, fulfilling lives despite the diagnosis.
Life-expectancy associated with this rare form of dementia is typically two to eight years following diagnosis. Wighton has adopted the motto “carpe diem” and believes in living each day to its fullest.
“When I say ‘seize the day — don’t put any trust in tomorrow,’ that is really my motto and my family’s,” she said.
Wighton has also taken to raising awareness, hoping to improve the resources available to those with the disease to help them live the lives they want.
“I ask myself, does it really matter if you have dementia to live well?” she said.
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