Scholars Coming Forward with Their Alzheimer’s Stories Helps Reduce Stigma of Dementia

  • Brilliant people get Alzheimer's and other dementias. Three rather public figures that come to mind are recent Nobel prize winner, physicist Charles K. Kao, retired psychologist, professor and Alzheimer's activist Richard Taylor and the husband of retired Supreme Court Justice Sandra Day O'Connor. Most of us can name a few lesser known figures, though to us they are far more important. My dad's dementia was much like Alzheimer's, however it was brought on by brain surgery that was meant to correct the effects of a World War II brain injury.


    We all probably know and love others who may not have been well educated, or achieved public acclaim of any kind. What better recommendation can anyone have but to be loved? Every life is precious and no person's legacy should be stigmatized by the fact that the person's life ended with dementia.

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    However, stigma remains. Views of all mental illness have changed for the better, but beneath it all there is still more shame involved in mental illness than physical. The courage of many with mental illnesses has helped greatly to pressure health insurance companies to cover mental health as well as physical health, however many have a long way to go.


    Dementia falls into that category. People with Alzheimer's often act oddly (as seen by society), and when they are out in a public place, they may act even more so as the extra stimulation and added confusion of strange (to them) surroundings only adds to their "inappropriate" behavior.


    What is inappropriate? Well, my dad was the center of a circle of stares as I wheeled him into a clinic appointment. It happened to be a "bad day." He was already tired from having gotten ready for the appointment and our ride there by paratransit bus. Often, by the time we were at this stage of an appointment, he would fall asleep. However, one time I'll never forget, he really came alive.


    Only he came alive believing the people around him were there to watch and he was in a parade. At least that's what he acted like. He smiled and waved a perfect "parade wave" as he looked side to side while I wheeled him into the clinic. Then, he started addressing the crowd in Spanish, which was his second language. That's when I got it. In his head, he was in Peru to give his talk on public health.


    I will admit to some embarrassment, however I was aware that the problem was mine, not his. We made it through the appointment, but I remember still my feelings. I wanted to tell those people that he's as smart as any of them - smarter than many. I wanted to tell them to quit staring!


    Many caregivers have endured worse; a wonderful parent suddenly tearing things off of racks in a store while swearing a blue streak; a parent or spouse who has never before wandered suddenly gone, only to be found walking through traffic on a main street not too far from home; a parent who managed to circumvent the caregiver's best attempt to disable the car, deciding to go for a joy ride and smashing into a tree.


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    These public displays of what is deemed by society "inappropriate behavior" can be embarrassing to loved ones, and as in the case of driving, dangerous. However, the public needs to be educated enough about the disease that many of them will have when they get old, so that they can be helpful, even if that just means leaving the caregiver to handle the situation without their gawking.


    When kids talk about their grandparents to friends, they generally have no problem admitting the grandparent uses a walker. But if Grandpa acts "weird" because he has dementia, the child or teen will likely not want friends to see him "like that." Even when adult children or well spouses talk to people about their ill parent or spouse, it's difficult to tell anyone but the closest friends that they are having a rough time because dementia has totally changed their loved one's personality.


    There's something  sacred about our personalities. Generally we want to present our best face to the public. With arthritis, heart problems and other diseases of aging, we may looked changed or even have to use props to get us from place to place, but our personalities remain mostly unchanged. When dementia steals  or our loved one's personality, it seems so much more tragic. As with many mental illnesses, it's invisible to lookers on, and so there is no obvious explanation for odd behaviors. Thus people who have the disease are often kept under wraps by their well-meaning family.


    It's only through the brave efforts of people like those mentioned above that the stigma of dementia will slowly decline. I applaud these people who would, from what I know of them, modestly say they aren't being brave, they are just being themselves. I applaud them for putting faces  on Alzheimer's and other dementias - faces that front brilliant minds - as examples of those who have dementia. These are the people who will educate the masses and eventually, I hope, delete the stigma of the disease.


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Published On: October 25, 2009