Cranbrook residents Barb Wright and Terry Stodler

Facing the stigma and finding support

Cranbrook residents living with dementia break silence on stigma in Alzheimer Society campaign

Pictured above: Cranbrook residents Barb Wright and Terry Stodler

Submitted

Cranbrook residents living with dementia are going public in an effort to change hearts and minds and tackle the ongoing discrimination they experience in their day-to-day lives.

“My initial reaction to his diagnosis was that I was scared to use the word ‘dementia’ to describe Terry’s behaviour,” says Barb Wright, whose husband Terry Stodler is living with the disease. “I wasn’t sure what it would mean for us. We’d just moved to the region.”

When Barb and Terry moved to the East Kootenay from Saskatchewan, they were looking for a bit of adventure in retirement. They didn’t expect to find themselves dealing with both a diagnosis of cancer and eventually dementia.

Barb describes the time since Terry was initially diagnosed as an eye-opener as they’ve adjusted their life to accommodate the challenges presented by the disease.

“Within this area, we have gradually acquired support by way of a small but mighty group of friends and are learning our way around the services that are available,” Barb says.

One way they have started to build a community is by attending the Alzheimer Society of B.C.’s Minds in Motion®, a social and fitness program for people in the early stages of the disease. Minds in Motion® offers the person with dementia and a care partner, the chance to connect with others on the same journey.

Barb and Terry are just two of many Canadians who are courageously stepping forward with their personal stories in the Alzheimer Society’s nation-wide campaign, I live with dementia. Let me help you understand. It launched Monday, January 6 as part of Alzheimer’s Awareness Month.

Spurred by alarming research indicating that one in four Canadians would feel ashamed or embarrassed if they had dementia, 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 damage stigma can do to individuals and families facing dementia,” says Carey Henry, Minds in Motion® Coordinator for the Alzheimer Society of B.C. in the East Kootenay region.

“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 theme was first used in 2018, more than 65 Canadians with dementia, including caregivers, have become spokespeople in the campaign, aimed at taking a stand against the stigma associated with the disease.

To read their stories and find out how you can help in the fight against dementia stigma, visit ilivewithdementia.ca. The site also features practical information and downloadable materials, including key myths and facts about the disease, as well as social media graphics to help spread the word about the campaign. Visitors to the site can also connect with the regional Alzheimer Society resource centre for help and support.

Through a host of programs and services, advocacy and public education, Alzheimer Societies across the country are there to help Canadians overcome the challenges of living with Alzheimer’s disease or another form of dementia. The Society also funds research to improve care and find new treatments and a cure.

More than half a million Canadians are living with dementia today. Many more are family members who provide direct care or are otherwise affected by dementia. In the next 12 years, nearly a million Canadians will be living with dementia.

“The number of Canadians living with dementia is soaring,” says Henry. “So this is an extremely important campaign to pause and think about our attitudes and perceptions and build a more accepting and inclusive society for individuals and families living with dementia in Cranbrook and everywhere else in the East Kootenay region.”

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