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Former Hamilton Health Sciences (HHS) nurse Phyllis Fehr is featured in the Faces of Dementia public awareness campaign. This poster and video storytelling campaign shows that people living with dementia are much more than their diagnosis. Posters are on display at HHS St. Peter’s Hospital for staff, doctors, patients and their visitors.
February 6, 2023

Former HHS nurse advocates for people living with dementia

Phyllis Fehr spent her career in nursing, caring for Hamilton Health Sciences (HHS) patients at Juravinski Hospital, McMaster University Medical Centre and the former Chedoke Hospital.

Then in her late 40s, while working in Juravinski Hospital’s intensive care unit, Fehr started to notice lapses in certain skills like charting, which had been second nature for years. Charting is how nurses share patient information with the rest of the health-care team.

The Faces of Dementia campaign features eight community members, including Phyllis Fehr, who are living with dementia

Phyllis Fehr is a passionate advocate for people living with dementia.

“I went from having a complete command of my role as a nurse to experiencing problems with certain everyday tasks,” says Fehr, now 63, who took a leave from work out of concern for patient safety, and to seek a diagnosis.

It took five years to find answers, and at age 53 Fehr was diagnosed with young onset Alzheimer’s disease.

Advocate for people living with dementia

Fehr wasn’t a stranger to Alzheimer’s. Her mother and grandmother had both been diagnosed years earlier. Back in their day, people didn’t talk about dementia, says Fehr, whose mother and grandmother went on to live isolated lives, losing contact with the outside world.

“My career at HHS gave me the knowledge and ability to stand up, as a nurse and as a person living with this disease, to advocate for change.”

Fehr chose to take a much different path after receiving her diagnosis. Instead of isolating herself, she became a human rights activist for people living with dementia as well as a strategist, policy creator, spokesperson and mentor.

Campaign posters are currently on display in the HHS St. Peter’s Hospital lobby for staff, doctors, patients and their visitors to view.

She promotes the rights and abilities of people living with dementia locally, nationally and internationally. Her work also includes advocating to fellow health-care professionals to listen, speak to, and treat people who live with dementia with dignity and respect.

Faces of Dementia

Most recently, Fehr took part in the Faces of Dementia public awareness campaign led by the Hamilton Council on Aging.

“I’m still me. I come with all my education. I come with all my years of experience.”

Faces of Dementia was designed for the Empowering Dementia-Friendly Communities Hamilton, Haldimand project, a communities-based initiative led by the Hamilton Council on Aging, people living with dementia and a multi-disciplinary team of partners, including HHS, GERAS Centre for Aging Research, and the Regional Geriatric Program central.  Funding is by the Public Health Agency of Canada’s Dementia Community Investment Fund (2020-2023).

The campaign features posters and video stories of eight community members, including Fehr, from Hamilton and Haldimand County who are living their best lives with dementia.

Their common goal is to share that people living with dementia are much more than their diagnosis. Campaign posters are currently on display in HHS St. Peter’s Hospital lobby for staff, doctors, patients and their visitors to view. Their video stories are shared on the Hamilton Council on Aging’s website.

“My career at HHS gave me the knowledge and ability to stand up, as a nurse and as a person living with this disease, to advocate for change,” says Fehr. “I’m still me. I come with all my education. I come with all my years of experience.”