A new four-part podcast series, Call to Mind, is launching January 31 as part of Alzheimer’s Awareness Month. The podcast aims to change the narrative about dementia and build understanding of the joys and challenges experienced by family caregivers.

Call to Mind is hosted by Dr. Debra Sheets, a professor in the School of Nursing at the University of Victoria, affiliate of the Institute on Aging and Lifelong Health, and co-founder of the Voices in Motion choir for people with dementia. Each episode shares intimate stories about love and memory loss through the voices of lived experience, featuring audio diaries and conversations of people living with dementia and their family care partners, who share about their lives during the pandemic.

Dementia Connections spoke with Sheets about the making of the Call to Mind podcast series:

Dementia and caregiving are both life experiences that many of us will face, either as a person with dementia or a caregiver for someone with dementia.

– Dr. Debra Sheets

How did the idea for the Call to Mind podcast develop?

Caregiving often creeps up on people. They start by dropping by their mom’s house and doing her laundry or taking their dad to a doctor’s appointment. They find themselves doing the grocery shopping and refilling prescriptions. Gradually, they are doing more and more. At some point, they realize that life as they know it has changed, and a lot of their time and energy goes to caring for their loved one. Caregiving has become a new role and their new normal.

Not only are podcasts a great opportunity to share information, but they also can engage listeners and inspire them to take action. I’d like to see our listeners recognize when they or others they know have stepped into the role of caregiver. Whatever their relationship with the person they’re caring for, it’s important that they identify as a caregiver or they won’t know to search for resources that can help them navigate this role, find resources and take care of themselves.

My colleagues and I hope to engage a broader audience in caregiving issues and dementia by offering a rich listening experience with powerful stories that are intimate and engaging.

Another key goal of mine was to address the stigma of dementia by deepening empathy and understanding of the personal experience of caregiving for those living with Alzheimer’s disease and related dementias across generations of listeners. Eighty-seven percent of caregivers wish that more people understood the realities of caring for someone with dementia. Dementia and caregiving are both life experiences that many of us will face, either as a person with dementia or a caregiver for someone with dementia.

How did you recruit participants and develop the episode themes?

I am one of the founders of the Voices in Motion choir, so we started there because we needed participants who felt comfortable and safe doing audio recordings. They needed to trust that the story we created with editing would be honest but not too raw.

How is the series unique from other podcasts on dementia?

We wanted to do audio recordings in the form of a diary. Many other podcasts involve interviews or are focused on guidance and support. We simply wanted to share the stories and let our listeners find connections with their own lives in what they hear.

What do you hope listeners take away from each episode?

We selected our caregivers with an eye to diversity — we hope listeners will find one or more caregiver stories will resonate and the listener will take away what is meaningful to them at this point in their lives. But I do hope it stimulates conversations about caregiving and about dementia.

A few facts about caregiving:

• While caregiving for older adults can be rewarding, it is increasingly demanding, complex and stressful. The average informal caregiver spends 19 hours a week on caregiving duties, and one in 10 provides more than 30 hours of care per week.
• Family caregivers are the backbone of our health-care system — they provide 75 per cent of the care needed by older Canadians living at home. Every day, about one in four (28%) Canadians provide care for a family member, friend or neighbour. There are an estimated one million caregivers in British Columbia and eight million across Canada.
• Over the next 20 years, the number of older Canadians with dementia requiring assistance will double, yet there is a shrinking pool of informal caregivers willing.
• Many Canadian caregivers report distress, including 26 per cent of those caring for older adults and 45 per cent of those caring for people with dementia.
• Many caregivers suffer financial, mental and physical health issues. We should care more about them. We need to do more to acknowledge and support family caregivers who willingly take on this work.

What next steps are planned for Call to Mind?

I hope the podcast inspires others to capture audio recordings with their family members living with dementia. One of my regrets is that I didn’t record my dad telling some of his corny jokes and favorite stories while he was alive. If the response is good, then I would like to pull together some resources to help caregivers capture stories while they can with their family member living with dementia. The 101-year-old mother with memory loss in the podcast passed away in September — and I hope this podcast brings a smile to her daughter as she listens and remembers.