Across the Sunshine Coast, brave and passionate voices come together to challenge attitudes and stop stigma and say, “Yes. I live with dementia. Let me help you understand.”
“I hope that when people need help on the dementia journey, they feel safe asking for it,” says Sandy Campbell, whose husband Les was diagnosed with vascular dementia.
After Les received his diagnosis, he and Sandy found that while some of the people in their lives were quite supportive, other friends pulled away out of discomfort. “Often it was the people who had a personal experience of the disease who stayed and supported us,” she says. It was one of these friends, whose wife was living with Alzheimer’s disease, who first recommended that Sandy reach out to the Alzheimer Society of B.C. “Being with other people on the same journey has been invaluable. I’ve been able to share without having to explain.”
Accepting her feelings and experiences has been one of Sandy’s biggest struggles as a caregiver, and this has led her to want to help other Sunshine Coast residents understand the impact that dementia has on people’s lives.
That’s the premise of the Alzheimer Society’s continuing nationwide campaign: Yes. I live with dementia. Let me help you understand. While there is no question that dementia is a challenging disease, it’s just one aspect of a person’s life story.
The campaign kicks into high gear during Alzheimer’s Awareness Month (January). It showcases the unique and diverse stories of individuals living with Alzheimer’s or another form of dementia across Canada. The aim of the campaign is to change attitudes toward the disease and erase the stigma. Life continues after a diagnosis of dementia.
“We’re turning the conversation over to the experts,” says Vivian Tsai, Support and Education Coordinator at the Alzheimer Society of B.C.’s North Shore and Sunshine Coast Resource Centre. “We believe sharing the stories of Canadians living with dementia will fuel a more open, supportive and inclusive dialogue about dementia and give confidence to others who have this disease to live their best lives.”
Research shows that stigma associated with dementia is rampant. In a survey commissioned by the Alzheimer Society last year, one in five Canadians said they would feel ashamed or embarrassed if they had dementia while one in five admitted to using derogatory or stigmatizing language about dementia.
In addition to helping Sunshine Coast residents better understand dementia, Alzheimer’s Awareness Month provides a platform for people like Sandy to define who they are as individuals, rather than being defined by the impact of the disease.
Throughout January and the remainder of the year, Sunshine Coast residents are invited to visit the campaign’s dedicated website to learn more about the people getting on with their life in spite of dementia, get tips on how to help end stigma, test their own attitudes towards the disease and download other useful resources.
To learn more about the campaign and get involved, see ilivewithdementia.ca
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