Stigmas surround dementia diagnosis
TORONTO—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.
“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,” she noted.
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,” Allen said. “I think that people think that you become irresponsible and illiterate as soon as you’re diagnosed.
“I found that the people I told were comparing me to people in the later stages.”
Mary Schulz, with 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 no longer can drive a vehicle and their licence will be taken away, added 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.
While it’s true that Alzheimer’s and other forms of dementia are progressive and eventually a person no longer will 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.
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.
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.”
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,” Catherine recalled.
“And I thought that was very sad.”