The dreaded “d-word,” dementia, is a fear for many. I know this firsthand: After caring for both my parents, who eventually passed away due to Alzheimer’s disease, I was afraid their fate—losing memories, the ability to have a conversation, and ultimately to take care of themselves—would be mine, too. I discovered early on through a 23andMe genetic test that I had both genes for Alzheimer’s disease, but still I delayed getting a diagnosis.
Early detection had saved my life twice already—once, in my 40s, when I pushed for a prostate cancer screening despite being told I was too young, and a second time, when I received a colon cancer diagnosis as a 60th birthday present and avoided life-threatening disease through early and aggressive intervention. Yet I waited 5 years before pursuing a diagnosis when I began experiencing the symptoms of mild cognitive impairment.
When I finally received my diagnosis at age 66, Mild Cognitive Impairment (MCI) due to Alzheimer’s disease, I had a discussion with my family about “going public” with my diagnosis—and all the associated stigma. What would it mean—for my family? For my business?
But my daughter asked, “Dad, if you don’t do this, who will?”
Since then, I have served on the National Early-Stage Advisors Group of the Alzheimer’s Association, participated in the Global Neuroscience Patient Council, and served as a Champion for the Voices of Alzheimer’s organization. I sit on the Alzheimer’s Patient Advisory Board of the Center for Study on Clinical Research Participation. I also serve on the Board of Directors of the Banner Alzheimer’s Institute Foundation.
This year, I launched a nonprofit, the Initiative to Change the “D-Word,” to eliminate use of the word “dementia/demented,” the inaccurate, outdated, insulting, and stigmatizing umbrella term we still use to refer to Alzheimer’s disease and hundreds of related diseases of cognitive impairment.
‘I am many things … but I am not demented.’
What’s in a name? Actually, quite a bit. “Dementia” comes from the Latin, meaning “out of mind,” and “demented” (often used in studies with “demented” and “non-demented” cohorts) is synonymous with “mad, insane crazy, and lunatic.” In a survey we conducted of 1,000 people ages 65 and older, “dementia” conjures up “confusion,” “helplessness,” and “isolation,” along with “sadness” and “fear.”
There’s a reason the soul-sucking creatures in the Harry Potter series are named “dementors.” The “d-word”—dementia—is a nasty word, and its connotations drive the stigma that causes people to not seek out diagnosis when early detection is more important than ever.
New treatments are opening up a new world of what “living with Alzheimer’s” will mean—but right now they are only available to those with mild or moderate cognitive impairment, so early detection is critical. If we continue to use “dementia/demented” with all that it implies, allowing the diagnosis to be something to fear and avoid, people will never receive treatment early enough. When symptoms of cognitive decline become all too apparent, it is too late for treatment.
I am many things: a business owner, a father, a husband, a skier, an off-road racer, and an advocate. I am not demented. My diagnosis was the beginning of a new chapter in my life, not the end. By changing the “d-word,” we can change the way we talk, and think, about cognitive impairment.
Hear Mike Zuendel in action at On Aging in two sessions, one 60-minute presentation 'Eliminating the "D-Word" to Combat Stigma and Promote Early Detection,' on Tues., April 22, 3:30–4:30 p.m. in Orlando M&N.
And a 30-minute presentation 'Eliminating the "D-Word": Tools and Resources for Change,' on Thurs., April 24, from 12:30–1 p.m. on the Equity Stage in the resource center.
Mike Zuendel is the founder and advocate-in-chief of the Initiative to Change the “D-Word,” a registered 501(c)(3) nonprofit organization dedicated to ending the use of the words “dementia/demented” in favor of non-stigmatized language.
Photo credit: Shutterstock/9nong
