A Long View of Dementia

“It’s not just about forgetting keys.”

Debbie Cameron has had a long view of dementia, making her uniquely qualified to discuss the impacts of dementia on an individual, and within family and community systems.

“Dementia is all-encompassing, actually.”

Debbie Cameron

Cameron’s grandmother lived in a care home for more than 22 years, and she supported her mother as she lived with dementia, until her death last year. “Everybody [in our family] has Alzheimer’s,” says Cameron, noting several of her grandmother’s sisters and aunts also experienced dementia.

Given her family history, Cameron wasn’t surprised when she was also diagnosed with probable Alzheimer’s disease in April 2021. “I’ve known for all my life that I may have this horrendous disease, but I just lived my life and hoped that I wouldn’t get it,” she says.

An experienced aquafit and seniors’ fitness instructor, Cameron knew cognitive changes were likely when she began to forget the names of students she’d been teaching for years.

“I noticed some differences about five years ago,” she says. “And then in 2021, there was no question, I knew.”

She notes that the paranoia and feelings of her family being against her were emotionally painful symptoms of changes inside her brain that were later confirmed by her family doctor and an MRI. She knew it was time to get help and to make plans.

Alongside her daughter, Jolene, her daughter’s partner, Tamara, and her three grandchildren, Cameron says they are facing her dementia diagnosis “together, as a family.”  They speak openly about planning for the future, including Cameron’s decision to pursue medical assistance in dying, known as MAiD.

“I saw what [dementia] did to the family, I saw what it does to our health-care system, and I know MAiD is the best option for me,” she says.

[Left to right] Tamara (Jolene's partner), Jolene (Cameron's daughter), Debbie Cameron, and Caylin (Cameron's granddaughter) enjoying a trip to Cuba in January 2022. Photo courtesy of D. Cameron.

“So that's what living with dementia is like for people with our health-care system,” says Cameron. “I was a mess. Thankfully, my daughter was with me, and we went to see my regular doctor and he told me that [the geriatrician’s assessment] was total ridiculousness given my family history and the MRI evidence of changes in my brain.”

Cameron and her daughter made a complaint about the incident to the College of Physicians and Surgeons. “Making a formal complaint is something I’ve never done in my life, but I felt it was so important,” she says. “If somebody with dementia went into that appointment and didn't have a daughter, she would've gone home and hidden in her apartment and suffered.”

Cameron’s dementia diagnosis has changed her life. She decided that it was time to give up driving when she left her car running in the parking lot while she shopped for groceries. “And then I had a couple peripheral vision changes, so I decided on my own that I wouldn't drive anymore,” she says.

"I know tomorrow morning when I wake up, I won't be the same as today — but that's okay."

– Debbie Cameron

One of the biggest challenges Cameron faces is living alone with dementia. “When I go online and look for help, it's for caregivers, caregivers, caregivers,” she says. “It never says, ‘living alone with dementia.’”

[Left to right] Caylin, Debbie Cameron, Jolene and Tamara posing on the beach. Photo courtesy of D. Cameron.

She speaks out about what it’s like to live with dementia by participating in research studies and advocacy panels.

Though she was initially hesitant to reach out, Cameron enjoys connecting with others who live with dementia. “I can honestly say, for anybody out there with dementia, reach out to some kind of support group,” she says.

Diagnosed during the isolating impacts of COVID-19, Cameron says joining online support groups, such as the Sisterhood group led by researchers at Lakehead University in Thunder Bay, saved her life. “I was around people that got me, and I could say or do anything, and they would listen and give me sound advice,” she says.

"The more people understand, maybe the less they'll judge."

– Debbie Cameron

Cameron's balcony garden, lovingly called Valhalla. Photo courtesy of D. Cameron.

Sharing experiences and laughing together “makes life light, and you don't feel so stupid.”

Cameron’s dementia diagnosis has also encouraged her to deeply savour life’s simple pleasures; her balcony garden has become a haven. “You would think it was 40 acres!” she says. “I can go out there and spend two hours nipping and snipping. It gives me so much pleasure. I love gardening.”

By sharing her story and how she has adapted to some of the challenges and opportunities dementia has brought into her life, Cameron hopes that more people will come to understand the lived experience of dementia.

“The more people understand, maybe the less they'll judge.”

Cameron’s tips to support people living alone with dementia to live well

1. I’m still Debbie

• Don't say, “You look so good, I can’t believe you have dementia.” — What are people with dementia supposed to look like?

2. Invite me, specifically

• Don't say to me, “If you ever need a drive anywhere, just ask,” because I never will.
• If you want to help, say, “Would you like to go to Winner’s on Tuesday at 3 o'clock?” or “Do you want to go for a hike on Wednesday?”

3. Support me to play

• For instance, as a family we'll play games. They have to tell me the rules, five or six times, maybe more, but we still play the game. I don't feel left out — I feel supported.

4. Help at home

• Affordable help at home to keep things clean and organized, and some pre-made meals would extend my independence.