I wouldn’t want to know.
This is a very common refrain I hear from friends and colleagues alike, whenever I raise the issue of early detection of Alzheimer’s disease. And while I understand the sentiment, it is incredibly frustrating to researchers and advocacy organizations, who feel that this is an important key to finding new treatments that may impact the illness earlier.
I have frequently mentioned to those professionals that part of the problem with public resistance is the incredible stigma surrounding the illness, due in large part to the very views that we espouse in our public discourse. Most of them disagree with me as to the extent to which stigma affects people.
But a new study from UCSD should raise a few eyebrows. This study looked at cognitive performance among four healthy groups of adults. Two groups carried the “APOE” gene that confers a significant lifetime risk of Alzheimer’s and two did not. One group in each category was informed of their genetic status and the other was not.
Those who carried the gene and were told about it performed significantly worse than those who were not informed, and they also had significantly lower self-ratings of their memory. And interestingly, those without the gene, but who did not know they were “clear,” had a lower self-rating than those were told they did not have it, even though they performed as well on cognitive tests.
This demonstrates the potential of self-fulfilling prophecy for those who live in a world with a highly stigmatized view of dementia. While this is only one study, the results should make us stop and reflect.
Think of all of the people in history who lived with Alzheimer’s later in their lives—individuals like Winston Churchill, Agatha Christie, Aaron Copeland, Maurice Ravel, Willem De Kooning, Rita Hayworth, and countless people of high accomplishment who never reached celebrity status. One wonders what (or if) they would have accomplished if their dreams were dampened early in life by the prediction of “high risk for dementia.”
It is particularly concerning to me because of a recent Medscape article detailing emerging technologies for assessing the lifetime Alzheimer’s risk of newborns. If the knowledge of an increased lifetime risk affects our own view of our capabilities—and our actual cognitive performance—what will happen to the upbringing and imagined potential of those who are pegged as “high risk” from the cradle?
My second book (due out in July) discusses a multitude of stigmas and self-fulfilling prophecies that are occurring every day, in all living environments. It is time for all of us who work to support people living with dementia to look carefully at the language we use to educate and lead.
I am not saying that research for better treatments is not important—it is. But when we go to great lengths to demonize the illness, we demonize the person with the illness by extension. And we inch closer to a world that is increasingly intolerant of those who don’t quite measure up to societal ideals. As Edvardsson et al. stated in 2008, if we truly believe the person is a non-person (or is fading away) then our ethical imperative for humanistic care fades as well.
As I have said countless times before, if we want people to agree to early testing, we have to provide a better path to well-being and meaningful life for those who test positive, or they will continue to prefer blissful ignorance.
I received a comment two years ago that helped me put into words what I have been trying to communicate. I was teaching my 2-day “Dementia Beyond Drugs” seminar in Denmark, and I started Day 2 by checking in with the class to see if the material was translating well to their own experience. One woman raised her hand and said, “This is the first time in all my years as a nurse that I have seen people with dementia as normal people.”
Can we move to a world where such a person could simply be “a normal person who happens to be forgetful”, just as another is “a normal person who limps due to a war injury”, “a normal person who wears an insulin pump,” or “a normal person who had a mastectomy a few years ago?” Or will the fear continue to drive a wedge between what is and what might be?
Over a decade ago, Thomas Dibaggio, a greenhouse owner who lived with Alzheimer’s, nicely summarized the conundrum that stigma and fear creates when he noticed a rat stealing pellets he was throwing into his fish pond:
“Humans crave intimacy, and it is easily had with dogs, cats, birds, and fish. But a cantankerous rat, carrying the weight of centuries of hate and misunderstanding, becomes a target of fear . . .
“What we do not understand, wild animal or human, we fear with murderous hate . . . A disease like Alzheimer’s has the same power to destroy as a bullet or scourge, through fear and misunderstanding . . .Now every morning I throw extra fish pellets into the lower pool for the rat.”
It is time to replace stigma and fear with acceptance and a pathway to well-being.