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 podcast series.
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, Ont. 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 Harvey, 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 detail.
Guy Chadsey from Stratford, Ont., 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, Ont. 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 says.
In 2019, Dementia Dialogue began producing a new podcast series on the “system journey,” emphasizing primary care. The podcasts are part of a broader collaboration between the brainXchange and the Geriatric Health Systems Research Group at the University of Waterloo.
Article provided by Canadian Institutes of Health Research