Still here: Alzheimer Society launches campaign to end disease stigma
Published Tuesday, January 5, 2016 11:41AM EST
Life doesn't end when Alzheimer's begins. That's the message the Alzheimer Society of Canada wants people to remember, as it launches a new social media campaign aimed at reducing the stigma associated with the disease.
The society launched its #StillHere campaign on Tuesday, as it kicks off Alzheimer Awareness Month.
This year, the society is challenging Canadians to recognize the people who are living with dementia in their communities, and to think about ways to help them live a better life, says the society’s director of education, Mary Schulz.
Canadians can do this by participating in the hashtag campaign, taking time to learn more about the disease, and read personal stories from affected families.
Alzheimer's disease is a degenerative disease that affects the brain. According to the society, approximately 747,000 Canadians currently live either with Alzheimer's disease or another form of dementia. That number is expected to increase to 1.4 million in the next 15 years.
Schulz said many newly diagnosed patients report that their hardest adjustment is getting used to how people perceive them.
"The thing that is really most difficult for them, is not adjusting to the disease itself, but to the stigma associated with it," she told CTV News Channel. "People with dementia are people just like you and I …They have whole lives. They have interests and values and histories and families and communities, and they want to stay engaged."
While many people diagnosed with dementia and Alzheimer's can continue to participate and contribute to their communities, Canadians are divided on whether a patient can live well, according to a Nanos survey.
The survey, conducted in July, 2015, found 47 per cent of respondents disagreed that someone with a dementia diagnosis could live well, and 47 per cent agreed that someone with dementia could live well. The survey polled 1,000 Canadians aged 18 years and older, and added an oversample of 500 women, 40 years and older.
In addition to the stigma associated with the disease, Schulz said many dementia and Alzheimer patients face negative attitudes as they go about their day-to-day routines.
For example, many have said that cashiers grow impatient when they're attempting to get the money to pay for their purchases, or bus drivers simply tell them to get on the bus when they're not sure if it's the right one, Schulz said.
Furthermore, many say it's difficult to continue to be in social clubs or faith groups, because the other members assume their diagnosis has made them unable to participate.
"That is very disempowering for people," Schulz said.
Cathy, 53, has been caring for her husband Boz for the past three years since he was diagnosed with Alzheimer's disease. She said many still can't believe that Boz is able to do his daily activities.
"My husband is a greeter at our local church," she said in a statement. "But people ask me all the time, 'How can he do that? He has Alzheimer's.'"
Pia Kontos, a senior scientist at the Toronto Rehabilitation Institute at the University Health Network, has spent most of her career challenging the way people understand and perceive dementia.
She said cognitive ability alone does not define a person.
"People with dementia can continue to engage with the world in many other meaningful ways," she said in a statement. "And supporting their dignity and worth improve their well-being and quality of life."