People stigmatized by dementia say 'see me, not my disease'

When Elizabeth Allen was diagnosed with early-stage Alzheimer's disease, the reaction of many of those around her made the blow even more terrible to bear.

People mistakenly assume those diagnosed with dementia are immediately incapable

It's a misconception that people become irresponsible and illiterate as soon as they are diagnosed with early stage Alzheimer's disease, says Elizabeth Allen. (Chris Young/Canadian Press)

When Elizabeth Allen was diagnosed with early-stage Alzheimer's disease, her first reaction was outrage that she had developed the progressive dementia. But it was the reaction of many of those around her that made the blow even more terrible to bear.

"More than that, I think it was my friends' reaction," said Allen, 72. "What they would say to me was: 'Oh, I forget things too. You're OK.' And my attitude was 'I've just been diagnosed with an incurable disease. My brain is dying and you're telling me I'm OK!'

"And that was the only feedback I was getting."

But it got worse, said Allen, a retired corporate computer instructor in Toronto, whose primary symptom is memory loss.

"I had friends drop me ... And even someone close to me said, 'Well why bother talking to someone who has Alzheimer's. They're not going to remember anyway."'

That was four years ago, and Allen has not heard from the person since.

"There are so many misconceptions. I think that people think that you become irresponsible and illiterate as soon as you're diagnosed," she said. "I found that the people I told were comparing me to people in the later stages."

Mary Schulz of the Alzheimer Society of Canada said the stigma surrounding dementia can take many forms, and people diagnosed with the condition can find themselves suddenly shunned by those in their social circle, often people they have interacted with for years.

"For example, they get stereotypical responses from friends, family, people in their faith communities, from their social network, people who will say, 'Oh, I guess you can't come to our book club anymore' — automatically the assumption being that a diagnosis of dementia immediately renders the person competently incapable in virtually all aspects of life."

Others will assume that the person can no longer drive a vehicle and their licence will be taken away, said Schulz, director of information, support services and education for the society. And at work, an employer may question whether the person can continue to do their job.

Parents with dementia 'still themselves' Catherine, who asked that her full name not be used, is the primary caregiver for her parents. Now in their early 80s, they have different forms of dementia that have affected them in varying ways.

But the reaction to her parents by long-time friends and even family has been similar — and heart-breaking, said the retired southwestern Ontario high school teacher.

"They led a very active social lifestyle and they were very popular. People seemed to really love them a lot," Catherine said of her parents, both artists who were active in the broader world of arts and music.

But when her mother started showing signs of confusion and her father was becoming forgetful and his behaviour began altering somewhat, friends they were involved with became uncomfortable, she believes.

"I started noticing that eventually people weren't really coming around as much."

Her father had sung in a choir for years, an activity he loved and looked forward to, but was forced to leave due to others' discomfort.

"I think people were just starting to feel a bit embarrassed for him — and annoyed by him," admits Catherine, explaining that he would repeatedly play the same joke on people, forgetting that he had already done it.

"All the people in the choir were my parents' close friends for many years and it was a real link to his past and to some social interaction. So I felt quite sad that it ended that way."

Family, too, began visiting less, among them grandchildren in their 20s, including her own two children.

"My sister made a comment to me a few months ago that she thought the grandchildren just felt that Mom and Dad were already dead. And I thought that was very sad."

Despite the memory lapses and other symptoms, Catherine said her parents are "still themselves," with their personalities, long-term memories and individual likes and dislikes intact.

"And if people realized that there's nothing to be afraid of, even though things feel different ... the more time you spend around them, the more you realize that they're still the same people. And you get more comfortable," she said.

"My heart aches for my parents because my mom wonders why nobody comes."

"So the overarching stereotype that people tend to bump up against is that a diagnosis immediately renders a person incapable in all areas of life, which of course is a myth."

While it's true that Alzheimer's and other forms of dementia are progressive and eventually a person will no longer be able to drive, find it difficult to follow conversation or be able to work, Schulz said it can take many years to reach that point.

"The stereotype in a vast majority of people's minds is that Alzheimer's disease and other forms of dementia equals the late stage of the disease.

"So if I were diagnosed tomorrow, the kind of stigma that I would unfortunately expect to experience is that therefore I am now as though I were at the very end of the disease process, completely unable to participate in activities of daily living that I can do now.

"Where, as you know, this disease has a very long trajectory and it could be a decade or longer until I'm actually in that situation."

Normalizing dementia

The only way to defeat the stigma surrounding dementia is for people with the condition, their family members and friends to stand up and say there is no shame in having the disease, which affects almost 750,000 Canadians, said Schulz.

"It becomes normalized, just like we have done with other diseases where people say, 'Yes, I'm a breast cancer survivor.' We didn't use to even use the word cancer, let alone breast cancer.

"How has that changed? By people stepping up and saying 'I'm not ashamed of this,"' she said.

"It's really about seeing the person and not the disease."

It was fear that people would no longer see "her" that initially kept Allen from disclosing her diagnosis to all but a few of those closest to her.

"I was so ashamed of who I was going to become that I wouldn't tell anybody for the longest time," she said. "And it wasn't who I was that I was ashamed of, it was what I knew I was going to be in the future that I was ashamed of."

But over time, Allen has come to a form of acceptance. She takes medications aimed at slowing the disease's progression, keeps active in a number of social groups and writes daily in a gratitude journal.

Her husband and family support her, those friends who did not abandon her talk openly with her about her condition and "accept me for who I am at each stage of what I like to think of as a journey," Allen said.

And she has this advice for interacting with a family member or friend diagnosed with dementia:

"If they can get past the way they visualize Alzheimer's and realize that we are emotionally attached to the people that we like and enjoy, even if we do forget your name.

"And we don't turn — I don't want to use the word 'stupid' — but we don't turn illiterate and irresponsible overnight. It's a long journey."