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.
Elizabeth Allen (left) sits in her Toronto home with Bob, her husband of 20 years. (Chris Young/Canadian Press) "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.
"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."
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