Honest. Heart breaking but hopeful, is the way one listener describes the Dementia Dialogue Podcast. This forum for people affected by dementia was launched in 2017 in response to an urgent need.
More than 432,000 Canadians over the age of 65 are living with dementia. This means, on average, that nine seniors are diagnosed with dementia every hour.
David Harvey, the host of Dementia Dialogue, started the podcast after retiring from the Alzheimer Society of Ontario where he'd spent a dozen years in public policy and program development.
"Although I don't have a background in broadcast journalism, I've always had a real love for radio and the power of the individual human voice," he says.
On the show, David interviews people with dementia and their care/life partners to provide insight into this condition and to strengthen the adaptive skills of people with dementia.
Clara Mersereau (l) and Jim Berry (r) are two members of the North West Dementia Working Group who have taken part in recent Dementia Dialogue podcasts.
David’s inspiration for the podcast came from a research project he was involved in called “Mapping the Dementia Journey” led by Dr. Elaine Wiersma. She is a Lakehead University health sciences professor and the director of Lakehead’s Centre for Education and Research on Aging & Health (CERAH) – the organization that funds and runs Dementia Dialogue. Dr. Wiersma is especially pleased about the podcast’s success in dispelling misconceptions about dementia.
“Typically, society and the media only talk about late-stage dementia, which promotes these tragic narratives,” Dr. Wiersma says. “But people can live well with their diagnosis for many years.”
Dementia Dialogue compassionately explores both the good and the bad that comes with dementia. “In a November 2020 episode,” David says, “I talked to activist and artist Christine Thelker, a woman with dementia who’s published a book called ‘For This I am Grateful.’”
“One of the best ways to combat stigma,” Dr. Wiersma adds, “is by getting to know people with dementia and listening to their stories.”
The podcast is also working to break down the harmful culture of silence faced by individuals with dementia. “Often people don’t talk about the fact that they have this condition because society doesn’t want to hear about it,” David says. “This can cause them to doubt their own capacity and withdraw from the world.”
David also interviews experts on the show, but viewers don’t need to worry that they will be overwhelmed with clinical jargon.
“I don’t want a lecture,” he says. “I want to know why they are interested in the topic and why’s it important to people with dementia.”
David and Dr. Wiersma are now expanding the reach of the podcast. In the fall of 2020, CERAH received more than $127,000 from the Government of Canada’s Dementia Community Investment fund to enhance the marketing of the Dementia Dialogue and to increase the number of episodes and episode contributors.
“We want to reach diverse cultures and communities as well as regions of the country where people have difficulty accessing services,” David says. They also hope to offer the podcast in French.
“These podcasts have the potential to alter the way we think about dementia,” Dr. Wiersma says. She believes that bringing about this kind of transformative change is essential.
“If we only see people as their diagnosis,” Dr. Wiersma says, “we are robbing them, and society, of the contributions they can make.”
Visit dementiadialogue.ca to find dementia resources and listen to the podcast.