Port Stanley resident produces podcast series to give voice to people with dementia and their caregivers
When Mary Beth Wighton was diagnosed with dementia at age 45, one of her strongest
impressions was of no longer being identified as her own person.
"I was referred to as a person living with dementia or a care recipient," says Mary
Beth. "It meant that my care partner could represent me."
This was the first thing she worked to change in her role as an advocate for people
living with dementia.
Mary Beth, who is the chair of the Ontario Dementia Advisory Group, shares this
experience in the first episode of Dementia Dialogue, a website and
The podcasts are based on a research project titled Mapping
the Dementia Journey. The project is led by Dr. Elaine Wiersma at Lakehead
University in Thunder Bay, Ontario along with colleagues Dr. Pauline Sameshima also
at Lakehead University and Dr. Sherry Dupuis at the University of Waterloo. Dr.
Wiersma's research is supported by the Canadian Institutes of Health Research.
David Harvey, former Chief Policy and Programs at the Alzheimer Society of Ontario,
produced the podcast series as a means of increasing our collective understanding
of dementia and gaining some insight on the lived experience of dementia.
"We chose the audio podcast format because of its intimate quality," says David,
who hosts the series and interviews participants. "You can draw listeners in and
keep their attention that way."
The first series of six podcasts focus on the topic of changing and adapting to
the symptoms of dementia and relationship dynamics. They feature the stories of
people living with dementia and care partners , who share their experiences in intimate
Guy Chadsey from Stratford, Ontario, whose wife Alison is living with Frontotemporal
dementia, spoke candidly about the early indicators of Alison's condition. He also
talked about how he is attempting to reconstruct his life while honouring his commitment
to his wife, who has lived separately in a nursing home for the past five years.
Susan Bithrey from Thunder Bay, Ontario shared her experience of caring for her
husband Reg, who lived with Alzheimer's disease for 11 years prior to passing away.
She talked about how she had to learn how to be a caregiver on the job and how she
hopes she made life easier for her husband.
Dr. Wiersma believes it's vitally important to actively include people living with
dementia in the research process.
"We need to incorporate the voices of people living with dementia to appreciate
their experience and build approaches to care that respond to their needs," she
In 2019, Dementia Dialogue begins producing a new podcast series on the "system
journey," emphasizing primary care. The podcasts are part of a broader collaboration
brainXchange and the Geriatric Health Systems Research Group at the University