Cowichan Valley residents living with dementia are going public for a third consecutive year in an effort to change hearts and minds and tackle the ongoing discrimination they experience in their day-to-day lives.
“I went home and I had a good cry,” Chris Kensit says when describing how she reacted to her diagnosis of dementia in 2015. “Because my mother lived with dementia — and now that my sister is also living with it — I had intimate knowledge of what the progression of the disease and its symptoms were going to look like.”
Living on her own in Duncan, Kensit took her disease as a challenge. “I have a science background and found doing research made it easier to cope,” she says.
“While my general practitioner has been incredibly supportive and generous, he wasn’t very well-versed in dementia and didn’t have many resources to draw on. Because I started doing my own research when he diagnosed me, I started to bring in studies and materials I’d found. He likes to tease me about being his teacher but the whole process has become a very collaborative one.”
Since her diagnosis, Kensit has been become a fierce advocate, joining the B.C. Leadership Group for People Living with Dementia, advising the Alzheimer Society of B.C. on how to support people affected by the disease and helping to spread awareness of the issue.
“I don’t think I’ve encountered stigma as much as I’ve encountered a lack of understanding about the disease — and a lack of patience,” Kensit says. “People need to understand that living with dementia means experiencing certain challenges, particularly around memory. They need to find solutions rather than getting fed up with someone when they’re struggling.”
Kensit is one of many central Islanders 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, Jan. 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 Jane Hope, Support and Education coordinator for the Alzheimer Society of B.C.’s North and Central Vancouver Island resource centre that serves the Cowichan Valley. “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 launch of the campaign 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 local 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 live 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 Hope. “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.”
To celebrate Alzheimer’s Awareness Month, residents are invited to an open house at the Alzheimer Society of B.C.’s North and Central Vancouver Island Resource Centre in the Cowichan Valley on Jan. 16. Chris Kensit will share her experience of the disease and the Society will also be recognizing a local volunteer whose contributions have eased the dementia journey for people in the community.