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.

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.