For nearly two years, people living with dementia across Canada, as well as their families and caregivers, have faced unique challenges brought on by the COVID-19 pandemic. These challenges include the effects of social isolation that increases cognitive decline, the lack of in-person programs and supports, caregiver fatigue, burnout and more.
Now, more than ever, people affected by both dementia and the pandemic need our help and support to live well.
That’s why it is vital to listen to Call to Mind: Audio stories of love and memory loss, a new, four-part podcast series. In Call to Mind, people living with dementia and their family care partners record audio diaries and conversations that tell us about their lives during the pandemic. Through the stories they tell in this podcast, we not only hear about their experiences – we hear from them, in their own words and feelings.
What is Call to Mind?
Call to Mind changes the narrative about dementia, building understanding about the joys and challenges experienced by family caregivers of people living with dementia, especially in the face of the COVID-19 pandemic.
Each episode is an unnarrated vignette of scenes and conversations, recorded radio-diary style by a caregiver and their family member living with dementia. Recordings were conducted in their own homes and throughout the pandemic. And in each episode, you will hear intimate, moving and surprising stories about love, resilience, isolation, the impact of caregiving and the power of music and singing.
How did Call to Mind come about?
The work behind Call to Mind is led by Dr. Debra Sheets at the University of Victoria, whose previous research includes Voices in Motion, an intergenerational choir connecting people living with dementia to volunteers in their community.
Dr. Sheets, who received funding from the Alzheimer Society Research Program for Voices in Motion, found that the choir helped people with dementia fight the effects of isolation through the social connection it enabled. The choir made a positive impact on their quality of life and well-being and decreasing cognitive decline.
When it became clear that the pandemic would have an isolating effect for people living with dementia and strain the capabilities of their family caregivers, Dr. Sheets sought to tell their stories. And so, the recordings that would lead to Call to Mind began.
“The caregivers provide a starkly honest glimpse into the challenges but also the rewards of caregiving. There are poignant moments that are so precious and fleeting. There are struggles, crises and moments of exhaustion,” says Dr. Sheets. “It is in these personal stories that we can see the growing strain we are placing on caregivers. We must find another way and I hope this podcast helps move that conversation forward.”
Through the podcast, caregivers and people living with dementia in Canada will have their voices heard. Each episode and story remind us that human connection is essential to the lives of people with dementia – indeed, all of the people featured in Call to Mind are current or former members of the Voices in Motion choir.
Where can you listen to Call to Mind?
And throughout February, the Alzheimer Society will highlight the stories of the people featured in each episode – follow us on Facebook, Twitter and Instagram and help raise awareness by sharing these stories.
Below, you can listen to the first episode, Beautiful Morning, which features Brenda and her mother Dorothy, who lives with dementia. Dorothy – or “Dot”, as most people call her – was living in a long-term care home when COVID-19 hit. With Brenda unable to visit due to lockdowns, Dot saw her 100th birthday pass without Brenda or any other family around her.
Why the stories in Call to Mind – and more projects like it – are needed
The heart and hope found in the stories of Call to Mind are supported by the Alzheimer Society, where people living with dementia and caregivers must come first. For people affected by dementia, the Alzheimer Society is the first link to community of caring, knowledge, support and more, and Call to Mind reinforces the Society’s mission to alleviate the personal and social consequences of the disease, even during a global health crisis.
“The COVID-19 pandemic is disproportionately impacting people living with dementia in Canada, completely disrupting their daily lives, isolating them socially, and increasing fatigue and burnout for their family caregivers,” says Dr. Saskia Sivananthan, Chief Research & KTE Officer for the Alzheimer Society of Canada. “Call to Mind illustrates the unique challenges that are facing these families right now, while also underlining the hope that is present. It’s essential their stories and voices are heard.”
The Call to Mind series also demonstrates the incredible impact that dementia research can bring to people affected by dementia in Canada. This podcast series was made possible by the University of Victoria, with funding from the Social Sciences and Humanities Research Council, the Alzheimer Society of Canada, the Alzheimer Society of B.C., Michael Smith Health Research B.C. and BC SUPPORT Unit Island Centre.
Funding from the Alzheimer Society is made possible through the support of our donors and partners. The more that people support dementia research in Canada, the more we will see innovative projects from researchers like Dr. Sheets – ideas like Voices in Motion and Call to Mind that can make a world of difference on the lives of people living with dementia, their families and their caregivers.
You can help make that difference.
Help and support are available
Have you been facing challenges during the COVID-19 pandemic, including the latest wave? The Alzheimer Society has the resources to help you.
- We can answer your questions, provide support and connect you to a community that shares your experiences. Please visit alzheimer.ca/FirstLink to get connected to your closest Alzheimer Society today.
- You can also check out the Alzheimer Society’s resources on managing through COVID-19, whether you are a caregiver or a person living independently with dementia. Visit alzheimer.ca/COVID to find these resources.
- Do you live with dementia, or care for a person who lives with dementia, and would like to share your story about your experiences during the pandemic? Please reach out to the Alzheimer Society at alzheimer.ca/TellYourStory. Telling your story may help others with similar experiences find the support they need.