Battling the stigma
Attitudes an issue for dementia patients: Alzheimer Society
TORONTO — When Roger Marple was diagnosed with Alzheimer’s disease at age 57 — after the initial shock wore off — he made up his mind to live the best life he could.
But he wasn’t prepared for societal attitudes toward people with dementia.
About a week after his diagnosis, Marple was in a lineup in a grocery checkout in his hometown of Medicine Hat, Alta., when the cashier asked a customer she was serving if he had found everything he needed, as he seemed to have forgotten something.
“So with a real loud voice, he says, ‘Oh, I’m having an Alzheimer’s moment,’ while mimicking someone having an epileptic seizure,” says Marple, now 60. “And the cashier and the whole lineup in front of me and behind me burst out laughing.
“At the time my wounds were really fresh from the recent diagnosis. While they’re laughing in this lineup, I’ve got my head down, choking back tears.”
Stigma is one of the biggest barriers for people with dementia trying to live with dignity in the face of a disease that relentlessly destroys the brain, says the Alzheimer Society of Canada.
“What people who have been diagnosed tell us is that after they get over the shock of the diagnosis, as they kind of adjust to that, what they actually find harder is the reaction they get from other people,” says Mary Schulz, the society’s director of education.
That could mean no longer being invited to a book club because it’s assumed they’re not going to be able to follow the plot, she says. It could be a doctor announcing the person’s driver’s licence will have to be revoked — without any testing — or deciding it would be pointless to rehabilitate a person with dementia who’s had a heart attack.
“We tend to portray people with dementia at the end stages of the disease,” says Schulz. “We tend to think of someone, quite frankly, as often drooling, in a wheelchair, in a long-term care home, maybe non-verbal, maybe acting out, hitting out, maybe a bit aggressive or agitated.
“And all of those things can happen and some will happen, but they might happen 15 years from now. So we tend to jump automatically to that very end stage and immediately put the person with dementia in that box.”
Families, too, can unwittingly stigmatize a loved one with dementia by avoiding public outings with the person because they worry about being embarrassed by inappropriate behaviour, which can occur due to a lack of impulse control as the condition progresses.
“But do we actually understand how likely that is to happen?” says Schulz. “It’s about helping families understand that you don’t want to automatically make Joe more disabled than he actually is — because that will come eventually.
“We need to remember that having a form of dementia is an illness, just like having cancer or having a stroke or heart disease. It needs accommodation.”
To counter the stigma surrounding dementia, the Alzheimer Society has launched a web-based campaign aimed at encouraging people to “see dementia differently,” including experiences of discrimination from some of the half-million Canadians living with the disease.
The website includes results from a national poll which found that 46 per cent of the 1,500 adult respondents would feel embarrassed if they had dementia. More than half admitted using stigmatizing language, such as referring to someone with the disease as crazy, or telling dementia-related jokes.
While preparing a speech on the disease to give to healthcare workers, Marple researched Alzheimer’s jokes.
“I found pages and pages and pages of websites that had jokes on them,” says Marple. “I even saw one website that had an Alzheimer’s joke of the day.”
Out of curiosity, he searched for jests about ALS, the fatal neurological condition known as Lou Gehrig’s disease. All he found was one article about people being outraged about a wisecrack that had been made about the condition in a movie.
“If I were to make a joke about ALS, about cancer or other serious diseases, people would be all over me,” says Marple. “So I want people to understand that this is what you’re making fun of.”