Richard Jamieson thought he knew Charlottetown by heart.
Last year, he drove downtown to drop off some cheques. He parked, grabbed his Bank of Montreal deposit book and walked into what he was sure was the right branch.
“I said to myself, isn’t it strange that the BMO has the Scotiabank sign across the top of the building,” he told CBC News: Compass host Louise Martin.
“I proceeded to walk into the Scotiabank, believing in my mind it was the BMO … and waited in line until the teller said ‘you’re in the wrong bank.'”
The Prince Edward Island man was diagnosed with young-onset dementia at age 52, and moments like that were among the first signs something wasn’t right. Richard’s father, Howie, was also diagnosed with the condition at just 49.
More than 650,000 people across the country are living with dementia, according to the Alzheimer Society of Canada. About three per cent of people are diagnosed before age 65.
For Richard, the disease first appeared in subtle ways — struggling to repair a chainsaw he’d used for decades or panicking over whether the family dogs had been walked when they already had.
“Dementia … can be really what the doctors say is insidious,” he said. “It kind of sneaks up on you over sometimes a long period of time.”
When he received his diagnosis, his daughter Alex moved home from out west.
“It’s been awesome to spend time with my dad,” she said. “It’s obviously devastating, and it’s good days and bad days.”
Dr. Simon Ducharme, a researcher at McGill University’s Montreal Neurological Institute-Hospital and the Douglas Mental Health University Institute, said most forms of dementia have no treatment that alters the disease’s progression.
Dementia, he said, is not one disease but can be caused by many things, including injuries or long-term alcohol use. But the most common causes are degenerative conditions such as Alzheimer’s.
In younger patients, he said, there is a greater chance the disease has a genetic cause.
Some families carry “true genetic forms,” where a single gene mutation can be passed from parent to child.
“There’s one chance out of two your kids would have that abnormal gene. If they do have that abnormal gene, they’re almost certain to get the disease,” Ducharme said.
“These true genetic forms are quite rare, so this is something we will find in people who have very young onset dementia with family history.”
Richard said his grandmother was also diagnosed with dementia at a young age.
‘It’s still my dad’
Richard said he wants people to understand dementia is far more than simply forgetting things.
“I don’t want people to be afraid that they’re suddenly going to get dementia. That’s not what my intent is,” he said.
“The word I want to get out to people is that it’s not just older people, and that it’s not just memory.”
He points to lesser-known symptoms, including “significant personality changes, uncontrollable anger and apathy, inappropriate behaviour, severe short-term memory losses … difficulty speaking, [decreased] spatial awareness.”
Richard used to have a Class 1 driver’s licence without ever having an accident. Today, he no longer drives because changes to his depth perception led to several close calls.
His emotions can also shift rapidly.
“I often swing from being upset and crying to being angry,” he said. “One minute apathetic and not caring, and the next overly emotional and too caring.”
Alex now helps her father navigate those difficult days.
“On bad days, we just swing with it and we give space whenever we need it. We leave grocery stores whenever it’s not working … we go sit on the deck and have a relaxing, quiet afternoon,” she said.
“I absolutely can differentiate my dad from the disease. It’s still my dad.”
Research offers new hope
Richard credits the Alzheimer Society of Prince Edward Island and local support groups — including one for people with young-onset dementia — with helping him and his family.
Still, the disease can devastate families emotionally and financially.
“The people in the family have to lose the person that they love, but then still care for the body that remains, like for years sometimes,” Richard said.
“It’s just as serious as every other terminal illness out there. But people don’t give it the same attention, the same understanding, the same respect.”
Scientists at Lawson Health Research Institute have been researching how lifestyle factors can affect dementia risk. Surim Son, a PhD candidate in epidemiology at Western University and lead author of the study published in The Journal of Prevention of Alzheimer’s Disease, joined London Morning to talk about the research.
He also hopes people stop dismissing the disease.
“Don’t ever talk to someone with dementia and say, ‘Are you sure you’re just not stressed?’ Because I hear that all the time.”
Ducharme said research into dementia is making progress, especially with diagnostic accuracy.
He added that new disease-modifying therapies for very early Alzheimer’s disease are an encouraging step forward, though the treatments are expensive and only suitable for a small number of patients.
“They’re not perfect, but they’re the first time that we’re able to have a meaningful impact on the progression of Alzheimer’s,” he said.
“We’re finally reaching the point where research is delivering some interventions. We’re still quite far from the optimal outcome we’re looking for, but after many years of stagnation, things are moving in the right direction.”
