Phyllis Fehr remembers the time she walked into a grocery store and her mind went blank.
She didn’t know where she was or why she was there. She panicked.
Fehr started taking deep breaths and looking at the shelves around her filled with fresh fruits and vegetables. She pieced together that she was in a grocery store and that she had come there to buy food.
So, she began picking up items from the produce section. Eventually, she made her way to the meat counter. There, she froze.
“I couldn’t remember what lunch meat we ate,” Fehr said.
Fortunately, the clerk listened to Fehr patiently, and offered to let her taste samplings of the meat until she found something she liked.
Fehr, now 61, was diagnosed with early onset Alzheimer’s in 2012 and remembers that day at the grocery store as an example of the kinds of supports people living with dementia need.
But not every experience has been a good one. She said another time, a clerk told her there was nothing that could be done. Fehr hopes to change that.
Fehr is part of the team working on the Empowering Dementia-Friendly Communities Hamilton and Haldimand project. On Aug. 13, the Public Health Agency of Canada announced funding for projects to support people living with dementia and their communities. The Hamilton Council on Aging, a non-profit charitable group, will receive more than $810,000 over four years for their project, which is intended to help make Hamilton and Haldimand County more inclusive for people living with dementia.
‘A hidden disease’
When Fehr was in middle school, her grandmother was diagnosed with vascular dementia, which stems from brain damage caused by decreased blood flow to the brain sometimes due to a stroke. But all Fehr remembers is that her grandmother was brought home and seldom taken out of the house after the diagnosis. Her family never spoke about it.
“My memory of that is her sitting in the rocking chair, rocking away every day till the day she died,” said Fehr. “To me, that wasn’t right. Back then, dementia was a hidden disease.”
Years later, when Fehr was working full-time as a nurse and raising nine children, her mother was diagnosed with dementia.
Because of a combination of health problems, her mother moved into a long-term-care home. Fehr said even though the facility would offer her mother opportunities to participate in recreational programs, her mother would often decline.
Her mother was always left in front of a window or sitting in her bedroom, Fehr said.
People with dementia often withdraw from social activities. Still, Fehr wishes the facility worked harder to help her mother stay involved.
“My mother loved to do things,” she said.
When Fehr was 48, she started to show symptoms of her own. She had difficulty with executive function — skills that include multi-tasking — and with language. She might forget she had bacon on the stove while cutting veggies for a salad for example, and she had difficulty getting her thoughts on paper.
Five years later, she was diagnosed with early onset Alzheimer’s. She’s still disturbed by the way it happened.
Fehr said she had to bring someone with her when she went for testing. So, her husband, Tom, joined her. When they went back for the results, she and Tom were sitting together in the gerontologist’s office when the doctor came in.
The doctor “does not look at me, does not speak to me, (but) speaks to my husband, and said, ‘Yes, your wife has early onset Alzheimer’s,’” Fehr said. The doctor said Fehr seemed to be doing well, so she should come back when she could no longer dress herself.
Fehr said she was “in shock” when she heard the diagnosis, even though she had expected it.
“To hear it is like getting kicked in the gut,” she said. “Then what happened after that was, inside, I was angry because you’re not talking to me,” she said, referring to the doctor. “She made me feel like I was totally incompetent, right from that moment.”
Mission to change how we see people with dementia
The shock of the diagnosis left Fehr wondering about what was going to lie ahead. A person’s life expectancy decreases with a dementia diagnosis, and Fehr’s doctor advised her to get her affairs in order.
Fehr said she spent two years preparing for the end of her life. She updated her powers of attorney and had a lawyer write out all her wishes. She even planned out what songs and readings there would be at her funeral.
“And then I sat back and I thought, but hold it. You can do things,” she said.
Thus began Fehr’s mission to advocate for people living with dementia.
She got involved with the local Alzheimer Society and took classes to learn more about the disease. She also joined the Ontario Dementia Advisory Group, and helped contribute to a provincial strategy on dementia.
In 2016, Fehr had the opportunity to speak at the Senate of Canada’s public hearings on dementia, as part of the Ontario Dementia Advisory Group and Dementia Alliance International, and worked on a national strategy for dementia in Canada.
“We always say ‘Nothing about us without us,’” Fehr said. “Who are the experts on dementia? It’s the people living with dementia.”
In 2017, Fehr spoke at the United Nations in Geneva to advocate for people living with the disease to be given the same rights as other people with disabilities.
Today, she also works with the Public Health Agency of Canada on dementia and serves on the board of the local Alzheimer Society.
“Even though you have dementia, you’re still able to do things, you just have to do them differently,” she said.
Three ways the community can become more inclusive:
1. Understand Consent
Because dementia progresses over time, the disease can eventually affect a patient’s ability to consent.
“Some people feel that as soon as you get the diagnosis of dementia or Alzheimer’s, you are incompetent,” said Fehr.
She said when she was having a procedure at the hospital, a nurse asked for her care partner, saying they needed his permission before moving forward with the procedure — even though Fehr had already signed the necessary papers earlier.
“I am fully capable of giving consent at this point,” Fehr told the nurse. The nurse checked with the physician and went ahead with the procedure.
Fehr is prepared for the possibility she won’t be able to make her own decisions in the future. That’s why she’s had conversations with her family about her wishes — including which long-term-care facility she could go into if the situation called for it. Having spent two years documenting her end-of-life wishes, Fehr’s confident her family can help her make decisions if she’s no longer able to herself.
In June, two research studies by McMaster University and Queen’s University found long-term-care residents risked receiving more treatment than they desired and poor end-of-life care during severe illness. Through surveys, researchers noted that while most long-term-care residents think their families are aware of their end-of-life wishes, not having those wishes documented may cause residents to receive care they wouldn’t want.
Fehr said it’s also important for caregivers to resist taking over completely, because it can mean the patient no longer has a voice.
“There are certain things, yes, you definitely have to take over for us,” she said about caregivers. “But keep challenging us. Otherwise, if we’re not challenged, we’re going to decline.”
2. Introduce training at organizations
Tracy Gibbs, project manager for Empowering Dementia Friendly Communities in Hamilton and Haldimand, said people with dementia who were interviewed for the first phase of the project said it was important for them to participate more fully in their communities.
But that can’t always happen without learning how to best meet the needs of people living with dementia.
“People don’t feel very confident that they know how to respond to persons living with dementia,” said Gibbs.
A Blue Umbrella program was started by the Alzheimer Society where groups and businesses could receive training to better serve clients living with dementia.
The groups that receive the training receive a blue umbrella logo to display in their business to signal to people living with dementia that the business is trained in strategies to help.
That can mean turning down the lighting and music in the room to prevent overstimulation of the brain, for example.
Fehr said she’s visited a restaurant in Bobcaygeon with a blue umbrella logo where they had certain tables in a quieter area with dimmer lighting reserved for people with dementia. She added staff was trained not to rush patrons with dementia while they were ordering from the menu.
The difference between the Blue Umbrella program and the dementia-friendly action plan being developed by the Hamilton Council on Aging is that people living with dementia and their caregivers will have a say in the latter, Fehr said. She hopes that once Hamilton’s plan is complete in four years, something similar to a Blue Umbrella program can be introduced to the city.
3. Reach Out
Stigma is one of the biggest themes that emerged, said Gibbs, noting the pandemic has also had a “significant impact.”
“That kind of stigma leads to the kinds of social isolation that can have a negative impact on one’s quality of life,” she said.
For example, she said people are missing out on many social activities that they used to participate in before, whether it’s coffee with a friend or going to a place of worship.
But social isolation was a problem well before the pandemic, since people living with dementia generally struggle with maintaining relationships.
“One of the most difficult things about this disease is the rupture of social relationships,” said Mary Burnett, CEO of the Alzheimer Society of Brant, Haldimand Norfolk, Hamilton and Halton.
She noted it can be difficult for friends to understand the changes in someone living with dementia, so the Alzheimer Society helps educate the public about the disease.
“Loneliness and social isolation is not good for anyone, and it’s particularly bad for people with dementia,” she said. “The biggest thing we can all do is continue to be a friend.”
Burnett said after her own father was diagnosed with Alzheimer’s disease, his friends continued to take him golfing every week well after his cognitive abilities began to decline.
Caregivers may also feel embarrassed if their loved one with dementia does something unusual while out in public.
“It’s important to be friends to our caregivers as well, and encourage them not to feel hesitant to bring their family member along,” Burnett said.
Friends and neighbours can reach out to people with dementia to check on them and offer help with groceries, she said.
“We talk about it takes a whole village to raise a child, well it also takes a whole community to wrap supports around a person affected by dementia.”
Maria Iqbal, Local Journalism Initiative Reporter, The Hamilton Spectator