A new University of Victoria podcast put recorders into the hands of Greater Victorians living with dementia and their caregivers, to give an intimate look into the daily joys and sorrows of an increasingly common disease.
UVic nursing professor Debra Sheets said her idea for the four-part series, Call to Mind, came from her desire to diffuse the stigma and fear surrounding dementia. Often devoid of the voices of those actually experiencing the disease, the predominant narrative of dementia is one of tragedy, Sheets said. But, it doesn’t have to be.
“People talk about dementia as if it’s the worst. They talk about it in terms of catastrophe and worst-case situations. We rarely see the stories in which we hear about the joy and love that comes from caregiving as well,” Sheets said.
This is the hole Call to Mind looks to fill.
Over 18-months of the pandemic, Sheets asked four sets of caregivers and people with dementia to carry a recorder with them and tape snippets of conversation and daily experiences. What emerged were the audio diaries of a daughter who brought her mother home after COVID forced them apart, a couple whose love and shared history of social justice keeps them strong, a husband and wife who communicate through music, and a set of siblings who are working to balance self-care with care for their mother.
The stories reveal moments of tenderness and laughter, exhaustion and sadness, ultimately settling on a common point – dementia does not define a person.
“It isn’t who they are,” Sheets said. “Memory loss can be challenging, but it’s just one aspect of a person.”
It’s going to be an important reminder for many people going forward. The Alzheimer’s Society of Canada projects the number of people with dementia will almost double in the next 10 years, as Canada’s population of those aged 65 and up grows. By 2030, an estimated 912,000 Canadians will live with the disease.
Sheets said she hopes the podcast inspires more people to use audio to capture enduring memories.
“Time is fleeting and it’s really nice when a loved one is no longer in our life to be able to hear that voice and remember those moments,” she said.
Call to Mind is available on all podcast apps and at calltomindpodcast.com.
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