One would think that with news coverage, television specials and even movies based on characters with Alzheimer’s disease, the stigma of dementia would ease. There shouldn’t be any more reluctance for people with Alzheimer’s disease to relate news of their dementia than if they had a cancer diagnosis. Yet the stigma that surrounds dementia as well as most mental illnesses is regrettably alive and well, often forcing people to erect a protective wall of denial around their symptoms rather than seek help.
Thanks to courageous people, we are seeing some cracks in the wall of that denial. Enormous credit for the progress that has been made can be given to famous individuals who’ve gone public with their own diagnosis. From former president Ronald Reagan to former Tennessee Lady Vols basketball coach Pat Summitt to acclaimed musicians Glen Campbell and Bobby Vee, celebrities have helped reduce the stigma of having a disease that changes one’s cognitive capacity and even one’s personality. I believe that these people and others who work with Alzheimer’s groups such as the Alzheimer’s Association and the Alzheimer’s Foundation of America have made important strides. Yet there’s a long way to go.
There’s something intrinsically frightening about knowing that we have a disease which, as it progresses, will allow others to see us as someone other than the “self” we know. The inability to understand our surroundings or even recognize the people we love seems cruel beyond words. The lack of control over how we behave makes us fearful, and unfortunately it’s part of the human condition to avoid what we fear and, for many, deride that which is feared.
Perhaps I’m wrong, but I wonder if the expanded knowledge that people now have that Alzheimer’s disease could possibly touch them personally may actually contribute to some of the fear that remains. Rather like a child who covers his or her eyes and says “you can’t see me,” some people may have an irrational feeling that if they don’t acknowledge Alzheimer’s it may not happen to them or someone they love.
There’s also the practical side. People fear the impact on their financial status as well as the effect it will have on their family and friends. They fear that the retirement they planned will disappear along with their memories of a life lived.
The stigma of mental illness goes back to days when people were thought to be “mad” or “possessed.” In those days, people weren’t likely to live long enough to develop what we now call dementia. Yet, it’s not that long ago when Grandma was hidden away at home because of her senile dementia. People were ashamed, so they kept the family secret as best they could.
Alzheimer’s disease is a physical disease that affects cognition just as most mental illness stems from physical causes in body or brain chemistry, head injury or other related issues. Any of these diseases can cause people to act differently than others and when people are different they are often feared.
There’s that word again – fear. Education is paramount in changing how people with Alzheimer’s and other illnesses that affect behavior are viewed or treated. You illness should not define your identity. Awareness of progress is essential. So is the hope that eventually we will find a way to eradicate these diseases as well the unfair stigma that now attaches to them.
Published On: May 07, 2014