New podcast series explores the realities of dementia caregiving

When Ashley Sharma graduated from high school, she didn’t imagine that within a few years, she would become her grandmother’s primary caregiver.

A full-time student with two part-time jobs, Sharma was 20 years old and living in a multigenerational home in Abbotsford when her maternal grandmother or nani, Devki started showing signs of dementia. At first, when she started to help look after her nani, Sharma resented the role—she wanted to live freely like others in their twenties.

But Sharma, now 24, who comes from a large Indian family with roots in Punjab, says she knew she wanted to help.

“It’s not in our culture to leave care of our elderly to others,” she says. “It is our responsibility as their kin to ensure their wellbeing as they did for us throughout their lives.”

Sharma’s story is one of four episodes featured in the second season of the University of Victoria podcast, Call to Mind, which launches on Jan. 30 on all podcast apps, including Spotify and Apple Podcasts, and on the website CalltoMindPodcast.com.

The series uses storytelling and audio diaries to explore the complexities and realities of dementia caregiving through the lens of four caregivers and their loved ones living with Alzheimer’s disease and other forms of dementia.

Other episodes include a Vancouver Island woman who shares her ongoing experiences of caregiving as her mother transitions into long-term care, a husband and wife dealing with the onset of more challenging symptoms and making the decision to waitlist for LTC, and a story of how it really does “take a village” when it comes to caring for someone with dementia at home.

Podcast host and project leader Mariko Sakamoto, a Michael Smith Health Research BC Scholar and assistant professor in UVic’s School of Nursing, says the podcast highlights the resilience of unpaid informal caregivers—and the heavy lifting they do in a fractured health-care system.

There is a real need for people to be able to age in place as long as possible, with as much wellbeing and comfort as possible. We need to be thinking more about what these people are going through. We know we need to support our informal caregivers.”

—Mariko Sakamoto

With a rapidly aging population, the number of Canadians with dementia is projected to reach over a million by 2030. Over the next 20 years, the number of older Canadians with dementia requiring assistance will double.

The multi-award-winning first season of Call to Mind, which launched in 2022, was led by Nursing professor emerita Debra Sheets. It used the same audio-diary approach to tell stories about life during the pandemic from the shared perspective of those living with dementia and a family care partner.

The second season’s more specific focus on the experiences of unpaid, informal caregivers gave Sakamoto and her research team the chance to study the value and impacts on caregivers of recording and sharing personal audio diaries.

Over 12 weeks last year, Sakamoto facilitated online storytelling sessions with the research participants. Research assistants—doctoral students Cynthia McDowell and Cole Tamburri—helped identify important themes about caregiving and dementia that arose in participants’ recordings. These themes then were discussed in a supportive group setting, giving participants the chance to share their experiences, as well as resources and advice.

Participants’ personal recordings and one-on-one interviews with Sakamoto were woven together to create four 30-minute episodes by audio producer Jenni Schine, Victoria sound designer David Parfit, and executive producer, Suzanne Ahearne.

For Sharma, speaking to other dementia caregivers allowed her to feel better connected and less isolated in her role. She says better attention needs to be paid to delivering culturally sensitive health care and dementia care.

It was a brilliant chance to be very open about what I was going through in my home life. It was nice to be able to share our struggles together and also solutions.”

—Ashley Sharma

Sakamoto, a registered nurse for more than 20 years and president of the Gerontological Nurses Association of BC, says ageism and dementia-related stigma is common in society.

Sakamoto’s paternal grandmother had Alzheimer’s disease. Although she lived for a long time, her grandmother died when Sakamoto was in her first year of nursing school.

“It's a different journey for everyone,” Sakamoto says. “Some people can progress quite quickly. Others can live well with dementia.”

She hopes the podcast helps listeners empathize about what it’s like to live with dementia, as well as to care for loved ones with the disease.

Sharma says her family didn’t have a history of dementia and that anyone could find themselves in a similar situation.

“How do you want to be cared for if you can’t care for yourself?” she asks.

This podcast series was made with support from the Social Sciences and Humanities Research Council, Michael Smith Health Research BC and the Alzheimer Society of BC.

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