“Alzheimer’s is not catching, except for the fear that you may be next. When I was a kid, the dark cloud no one dared mention was cancer … the ultimate exclusion from a social life. I hope that someday soon, ‘I have Alzheimer’s’ will be said with a strong voice and clear determination to eliminate it.” …from famed virtuoso musician Eugenia Zukerman, author of Like Falling Through a Cloud: A Lyrical Memoir.
Ms. Zukerman’s sister, Dr. Julie Ingelfinger, quoted her (as above) in a NEJM Perspective piece : “Kinder, Gentler Dementia-Friendly Alzheimer’s Care“. She states that one of the aims of Zukerman’s book is to help dispel the stigma associated with dementia.
The “exclusion from a social life,” social awkwardness from friends and strangers, along with an unfounded sense of shame or embarrassment can all be aspects of “stigma,” defined simply by Merriam-Webster online as “a mark of shame or discredit.”
Academic neurologist Dr. Daniel Gibbs is also dealing with stigma, as he writes about and discusses his own early onset Alzheimer’s Disease.
Just this week, in JAMA, he discusses being the subject of a monoclonal antibody trial, his ICU experience, but his main focus now is an advocacy for early diagnosis, which he acknowledges is controversial.
He discusses his book, Tattoo on My Brain, mentioning stigma: “For me, it represents kind of coming out of the closet, and that’s something that I hope we can do in general for Alzheimer disease: Get rid of the stigma and the avoidance of conversations about it and accept it and deal with it openly”
There are dozens of medical articles over the last five years about stigma and dementia, with a recent review. One paper that starts with a lengthy description of medical hypotheses in dementia points out that “early diagnosis” might lead to more problems with stigma.
It concludes with some approaches to helping with stigma with patient-centered care, but like dementia itself, solutions are not easily obtained.
From a caregiver’s perspective, one can be empathetic toward the person with dementia, and “share the pain;” of course, sometimes the stigma feels personal. On the other hand, can there be a secret celebration that the subtle and powerful feelings engendered by stigma and embarrassment are still intact?
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