Anne describes the past two years living with dementia like being on a roller-coaster — except instead of sitting securely inside, she’s hanging off the train by a strap, flailing and hitting the trellises.
“I never know what’s going to happen and it can be really painful sometimes,” said the Hamilton resident who wanted to be identified by her middle name out of fear of repercussions from family members who may view her as incompetent.
“I really got lost, very lost to the point of being suicidal.”
Anne, 61, is one of thousands of Hamiltonians living with dementia. Faced with challenges at work, in her social life and at home before being diagnosed with early onset Alzheimer’s in 2019, she struggled with her mental health and plunged rapidly into despair.
Having cared for family members with dementia since her late teens, and never marrying or having children of her own, Anne’s biggest fear was the uncertainty of when — and how — she would die. She previously worked in long-term-care management and knew the conditions in care homes intimately. She worried that she would live out her last days all alone in a care facility, surrounded only by strangers.
Her fears were so overpowering that she sought medically assisted death to avoid that from happening.
“I wanted to make sure that I had everything in place before my mind went, and I couldn’t speak for myself,” she said. “That really scared me.”
Today, Anne is a member of a working group to support the Empowering Dementia Friendly Communities initiative — a Hamilton Council on Aging project funded by the Public Health Agency of Canada to improve life for people living with dementia and their caregivers.
On Aug. 13, the Public Health Agency of Canada announced that the Hamilton Council on Aging, a non-profit charitable group, will receive more than $810,000 over four years for a plan to help make Hamilton and Haldimand County more inclusive for people living with dementia.
The first stage in developing a plan involves speaking to community members with dementia and their caregivers about their experiences. Hamilton Council on Aging conducted interviews with community members and recently wrapped up an online survey seeking the public’s input to inform their next steps.
Getting diagnosed with dementia
Anne’s journey with dementia began about 10 years ago, when she began to lose interest in all aspects of her social life. The former public speaker was heavily involved in the community but found she could no longer keep commitments.
She used to go to church every Sunday, but started losing her motivation to attend.
She also had difficulty remembering things, including her debit PIN, bill deadlines and her keys. She had a tremor, difficulty walking and a hard time finding words even though she knew what she wanted to say.
She dealt with finances in her job with the city, and would occasionally find that her funds didn’t add up.
“I used to take money to work, and if I was short, I would just put in the funds,” she said. “I didn’t tell anybody.”
She had multiple fires at home — two which required the fire department — from forgetting to turn off the oven or stove.
She also noticed changes in her personality. She was becoming more withdrawn, and although she never used to be an angry person, she’d burst into anger at things that didn’t affect her.
In 2016, Anne saw her doctor about her memory and mobility problems. She had a series of tests which suggested some cognitive impairment. A neurologist suggested it could be early onset Alzheimer’s and prescribed medication.
In 2017, when Anne’s forgetfulness worsened and her co-workers began to express concern, she started months of meetings with her supervisors, managers, human resources and her union to find strategies and accommodations. Her memory problems led her and her supervisors to agree in spring 2018 that she was no longer fit to work.
By October 2019, after more testing, her neurologist confirmed Anne had early onset Alzheimer’s disease which was causing her dementia.
According to the Alzheimer Society of Canada, dementia is not one specific disease, but a group of symptoms such as memory loss and difficulties with language resulting from physical disorders affecting the brain.
Alzheimer’s — a fatal disease which destroys brain cells and worsens over time — is the most common cause of dementia. While there are medications that can treat symptoms of Alzheimer’s, there is currently no cure for the disease.
A person with dementia faces difficulty in at least two areas of cognition — for example, memory problems which are not normal for the person’s age, problems with language, and difficulty problem-solving, said Dr. Christina Gojmerac, a clinical neuropsychologist at St. Joseph’s Healthcare Hamilton.
“The second part of it is that these deficits have impacted this person’s ability to care for themselves,” she said. That can include needing help taking medication, remembering appointments or maintaining personal hygiene.
Struggling with mental health
After receiving her diagnosis, Anne felt “totally lost.”
She didn’t know where to turn for help. Her doctor told her the disease was progressive and had no cure, but couldn’t tell her what to expect and when.
She also didn’t feel comfortable telling her family about the diagnosis, because she’d seen how some of them treated other relatives with dementia — out of ignorance of how dementia works — and didn’t think they’d have the patience to care for her.
Although Anne is still technically considered a city employee and receives disability insurance and CPP disability co-payments, no longer being able to work or volunteer was “devastating.”
“All of a sudden, my life seemed to come to a stop,” she said.
That was the point when she started seeking medically assisted death.
“Depression and suicide in the early stages (of dementia) are not uncommon,” said Mary Burnett, CEO of the local Alzheimer Society serving Brant, Haldimand Norfolk, Hamilton and Halton, who noted it can also affect people who are caring for loved ones with dementia. “I think sometimes depression in older adults and people with dementia is underrecognized.”
It’s one of the reasons why most of the Alzheimer Society’s counsellors are registered social workers, said Burnett.
“As the numbers grow, it was very important that we understand and are able to recognize that so that we can refer people on to the mental-health resources they need,” she said.
The Alzheimer Society provides support to people and their care partners through outreach, education and counselling, and support those at risk through strategies to prevent onset of dementia.
“The biggest risk factor is our age and our population is aging,” said Burnett. And yet, the Alzheimer Society stresses, “dementia is not a normal part of aging.”
Over the 13 years since she’s been with the Alzheimer Society, the biggest change Burnett has seen is the increasing number of people living with dementia as the aging population increases, but also an increased awareness among health-care providers who are referring people to the Alzheimer Society more often.
“We know that an early diagnosis and referral for support and education helps people live better with this disease.”
Living, not dying, with dementia
The turning point came for Anne when she began reaching out for help, and people in turn began offering support.
She reached out to a free counselling service offered by the employee assistance program through her job at the city. A counsellor there recommended she contact the local Alzheimer Society. So, Anne got in touch and met people on the same journey.
Anne also contacted her church again after a long time. She resumed her role as a “prayer warrior,” joining a mailing list to receive messages when anyone in her community needs a prayer.
She received counselling from a social worker who’s on staff with her family physician.
Her pharmacy also started making bubble packs of her pills to make taking medications easier. She stopped most of her cooking to avoid further house fires.
Burnett said that since many people are now being diagnosed in the early stages of dementia, they often still lead purposeful lives.
“People with dementia are finding their voice. They are becoming advocates and they want to be respected and treated as important, purposeful people with lots of contributions to make long after a diagnosis,” said Burnett. “As one advocate said, ‘I’m not dying with dementia, I’m living with dementia.’”
Two years after Anne’s diagnosis, there are still many unknowns about how the disease will progress. But her perspective has changed. She understands she will have good days and some bad ones, so she’s gentler to herself.
Anne said it was important to stay connected and find a purpose.
She takes free online courses about dementia through the University of Tasmania in Australia.
“I’ve got my first certificate, I got 94 per cent,” she said. “My mind is not supposed to be working, but I’m living it.”
She also reconnected with her old hobbies such as knitting hats and blankets for donation. And, she enjoys spending time caring for her two bunnies and cat, who she says love her right back.
“I am very grateful. I’ve put things into perspective,” she said. “I’m starting to feel alive again.”
Maria Iqbal, Local Journalism Initiative Reporter, The Hamilton Spectator