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Brave, passionate voices come together in Nelson to stop dementia stigma

“Both Willi and I knew something was up,” says Stella Adams, talking about when she and her husband Willi Brombach began to suspect that Stella might be living with dementia at the age of 77. “We were both seeing changes.”

Since Stella’s dementia diagnosis, they have focused on staying active, eating well and staying social. They regularly go out dancing with friends on the weekends and have connected with the Alzheimer Society of B.C. to become participants in Minds in Motion®, a social and fitness program for people in the early stages of dementia to attend with a care partner.

Both Stella and Willi value their connection with the Alzheimer Society of B.C. Stella believes strongly in the importance of having a support network, while Willi says, “Informing ourselves – understanding both what is happening and what the future may look like – has helped make it less frightening for us.”

There is much more to Stella than her disease, and she has a lot of life left to live.

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 Mary Beth Rutherford, a Support and Education Coordinator at the Alzheimer Society of B.C., which helps Nelson families living with dementia. “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 Canadians better understand dementia, Alzheimer’s Awareness Month provides a platform for people like Stella and Willi to define who they are as individuals, rather than being defined by the disease.

Throughout January and the remainder of the year, Nelson 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, visit ilivewithdementia.ca.