Going Public with an Alzheimer's Diagnosis

Sadly, even after years of work to educate the public about any illness that affects the brain, a stigma remains. No matter that most, if not all, mental illnesses have a biological basis. No matter that people aren't any more responsible for a brain illness than they are for other illnesses. The fact remains that whether the disease affects the brain occurs at a younger age in the form of depression or bi-polar disease or an older age in the form of Alzheimer's disease or another dementia, people with brain illnesses are often reluctant to acknowledge their illness for fear of being treated differently than others.

There has been some progress when it comes to enlightening the public, but not nearly enough. I believe much of that progress has been brought about through Alzheimer's advocacy. According to the Alzheimer's Association, five million people are now living with Alzheimer's disease and that number will explode as our population ages. Society can't "hide" that many people. Whereas once an aging relative who became "senile" was whisked off to the back bedroom when company came, now we arrange museum visits and special theater performances for those with memory loss and other cognitive issues. Celebrities such as musician Glen Campbell and basketball coach Pat Summitt have gone public with their Alzheimer's diagnoses, making it somewhat easier for others to have the courage to come forward.

An article on RidgefieldPress.com titled 'Coming Out' with Alzheimer's tells us about Scott Russell of Ridgefield, Conn., who was diagnosed with AD at age 59. Russell says he fell into a serious depression after his diagnosis. Eventually, however, he decided to publicly acknowledge his disease. Russell says, "One day I just decided to end the secrecy. Self-pity wasn't doing anyone any good. I couldn't change the diagnosis, but I could certainly change the way I was handling it."

Being open about dementia

My dad had dementia. He'd had surgery to correct a problem left from his World War II brain injury, but the surgery backfired and he was left with severe dementia. Unlike Alzheimer's, which slowly destroys the brain, the change in Dad was immediate and impossible to miss. There was no choice but to tell people what happened, since he changed literally overnight.

During the decade that Dad lived with dementia, he had moments of clarity. One such moment I will always hold close is when he suddenly looked at me through clear, intelligent eyes and said, "Do they know what happened to me?" As he said this, he pointed out at people passing the doorway of his room in a nursing home. I said, "Yes, Dad, they do." He quickly slid back into his foggy state of an altered reality, but I knew then that I would tell his story. He wanted people to know why he acted the way he did.

In my 2008 article, "Social Stigma Still Evident for Alzheimer's, Dementia and Mental Illness," I wrote:

I do think a lot of what I wrestled with is that I knew people were judging my beloved dad. They didn't think it odd that this aging gentleman was in a wheelchair. They didn't find it odd when he needed a sling for his broken arm. But they stared, a few obviously questioning my judgment [for taking him out in public], when he acted "odd." The feeling from some was that I should keep him hidden away so that people didn't have to witness this behavior.

Let's face it. Dementia of any type is hard to hide as time goes by. While depression, obsessive compulsive disorder, bio-polar disease and other brain illnesses may be hidden for a time from casual observers, dementia will become very noticeable once it reaches its more advanced stages.

It would seem to me that people would rather have friends and even strangers realize that they have a disease that is dictating their behavior rather than thinking that their behavior is a choice. However, with the stigma still attached to brain diseases, the decision to "go public" remains difficult. Employers and colleagues are likely to treat a person differently if they find out about an Alzheimer's diagnosis, and rightly, they will begin to wonder how long the person can still do their work efficiently - or at all. Friends worry about how they will communicate with the person they've known so long, so they drift away.

The stigma of brain diseases is now less intense than it was several decades ago. When more people like Scott Russell decide that they are going to openly live the rest of their lives with Alzheimer's rather than hide their disease from the public, people will become increasingly more comfortable around those with mental challenges of all types. When that happens, everyone will benefit.

Carol Bradley Bursack
Meet Our Writer
Carol Bradley Bursack

Carol Bradley Bursack is a veteran family caregiver who spent more than two decades caring for a total of seven elders. This experience provided her with her foundation upon which she built her reputation as a columnist, author, blogger, and consultant. Carol is as passionate about supporting caregivers work through the diverse challenges in their often confusing role as she is about preserving the dignity of the person needing care. Find out much more about Carol at mindingourelders.com.