When Barry Kaufman was diagnosed with the progressive brain disease Lewy body dementia, one word stood out more than any other: terminal.
“My initial response—and I’ll sanitize it a bit—was ‘Oh, sugar!’ ” recalls Kaufman, 83, of West Bloomfield.
That was 13 years ago. With the help of his family and medical team, a walker and activities to keep his mind sharp, Kaufman remains active well beyond the average life expectancy of five to seven years for the disease.
REGISTER: DISRUPT DEMENTIA SERIES
Kaufman vowed early on that he would live the fullest life he could. “And I have,” he says.
AARP Michigan will share stories like Kaufman’s through Disrupting Dementia, an educational series on adult cognitive disorders, including Alzheimer’s disease, Parkinson’s disease and vascular dementia. The virtual presentations are scheduled for all four Thursdays in October.
The topics will include ways to prevent or delay cognitive decline, tips to recognize symptoms and get a diagnosis, treatment and resource options and racial and ethnic disparities in brain health.
AARP officials hope the series will inspire and empower people with cognitive disorders and their caregivers. “People are very fearful about getting dementia,” says Lisa Dedden Cooper, AARP Michigan’s manager of advocacy and cochair of the Michigan Dementia Coalition. “If someone gets a diagnosis of dementia, they often go into end-stage thinking about how they’re going to die as opposed to what they can do to make sure they can live well.”
Becoming more proactive
According to the Alzheimer’s Association, about 11 percent of Americans 65 and older have Alzheimer’s, the most common form of dementia. The problem will increase as the 65-plus population grows. The number of 65-plus Michiganders with Alzheimer’s could reach 220,000 by 2025, a 15.8 percent increase from 2020, an association report says.
Joy Spahn, a retired regional director of an Alzheimer’s Association Michigan chapter, now volunteers with AARP—speaking about dementia and brain health at support groups, community centers and other organizations.
She has noticed a shift in attitudes toward dementia, from dread to prevention. People want to know what proactive steps they can take to remain cognitively healthy as long as possible, she says. Sharing AARP’s Six Pillars of Brain Health—which include staying mentally and socially active, managing stress and getting regular exercise—can help people feel empowered, says Spahn, who lives near Grand Rapids.
“That diagnosis of dementia is not something anybody wants,” but people still have the potential to have pretty full lives, Spahn says, noting that some neurological diseases can begin 20 years before the condition becomes apparent to outsiders.
With this in mind, AARP Michigan supports the development of a statewide campaign to fight the stigma associated with adult cognitive disorders.
Kaufman, for one, has remained driven and active despite challenges with balance and speech. He’s an avid reader, enjoys word and number games, exercise, socializing with friends and volunteering.
“I’ve had people tell me, ‘You don’t look like you have dementia,’ ” Kaufman says. “I smile and ask them ... ‘What does dementia look like?’”
To find the Disrupting Dementia series, go to aarpmi.org/disrupt2023. To request a brain health presentation for your group, email LCooper@AARP.org.
Sarah Hollander is a writer living in Cleveland.
For more on dementia
This story is provided by AARP Michigan. Visit the AARP Michigan page for more news, events, and programs affecting retirement, health care, and more.
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