Residents living with dementia break silence on stigma

Photo: Alzheimer Society of B.C.

Kelowna resident Craig Burns

Kelowna resident Craig Burns is one of many Canadians living with dementia who is going public in an effort to change hearts and minds, ultimately tackling the ongoing discrimination they experience in their day-to-day lives.

The Alzheimer’s Society's nation-wide campaign 'I live with dementia. Let me help you understand.' launched early Jan. as part of Alzheimer’s Awareness Month.

“People often don’t want to talk about it or don’t know what to say when they learn I have dementia,” says Burns, a former provincial client services manager for the Red Cross. “I want to inform them, not make them feel berated or judged.” 

In 2016, Burns was diagnosed and has since become a fierce advocate.

“While I do see awareness of the disease grows, we still have a long way to go to educate the public and build communities that are truly dementia-friendly. It’s going to take all of us, whether we’re living with the disease, caregivers, health-care providers or simply part of those communities.”

Research indicated that one in four Canadians would feel ashamed or embarrassed if they had dementia, and the campaign gives a voice to Canadians living with dementia who are frustrated by the constant assumptions and misinformation associated with the disease.

“Unless you have experienced it firsthand, it can be difficult to appreciate the damaging stigma can do to individuals and families facing dementia,” says Sherry Wezner, support and education co-ordinator at the Alzheimer Society of B.C.’s North and Central Okanagan resource centre.

“Too often, negative feelings, attitudes and stereotypes surrounding dementia dissuade people from seeking help and discourage others from lending their support. By providing a platform for Canadians to share their stories, we can cultivate empathy and compassion and help break down the stigma so that Canadians living with dementia can live a full life.”

Since the campaign was first introduced back in 2018, more than 65 Canadians with dementia, including caregivers, have become spokespeople in the campaign.

To read their stories and find out how you can help in the fight against dementia stigma, visit ilivewithdementia.ca.