People with lived experience call for greater awareness around dementia, as rates rise

Jim Thomson, right, has been living with dementia symptoms for 15 years. His wife Karla is his caregiver.

A Vancouver Island couple married for 62 years remembers making a conscious choice that they wouldn’t hide when one of them was diagnosed with dementia – and they’re among advocates calling for greater awareness as the number of Canadians living with it rises.

“I still feel that people will judge you from that point of view rather than the whole person,” says Jim Thomson.

The 87-year-old’s symptoms have slowly progressed over the last 15 years. Today, he lives at home and says his biggest challenge surrounds memory loss and the ability to find the right words during some conversations.

“We don’t want to be felt sorry for,” says Karla, his wife and caregiver. “We want to be heard and understood and accepted for just the way we are.”

They say they’re grateful for the friends who’ve stood by as their days started to demand routine for Jim. He’s involved in a men’s group, walking group and programming.

“We have a coffee hour on Sunday mornings,” says Karla. “We leave out of breath because we’ve had such a nice time. But often I’ll look and Jim will be standing over in a corner by himself.”

The Alzheimer Society of B.C. says staying socially active is important after a diagnosis.

A frontline worker with the society finds people with dementia often feel a change in the way they’re treated by others.

“Friends may withdraw, people don’t know what to say to them, they might get funny looks,” says Jane Hope, the society’s support and education coordinator. “It’s really important that people learn about dementia.”

Hope says dementia is an umbrella term for a group of symptoms. They include memory loss, challenges with thinking or language that are severe enough to reduce a person’s ability to perform daily tasks, and changes in mood or behaviour.

The Alzheimer Society says 733,040 Canadians are estimated to be living with it. The figure is forecast to reach 1.7 million by 2050. And while anyone can be affected by dementia, people are at a greater risk developing it as they age.

“For some people the disease can progress really quickly and for others, they can have a really good life with adjustments,” says Dr. Mariko Sakamoto, an associate professor at UVic’s school of nursing.

She also helped co-research a free, online toolkit called Flipping Stigma.

“As a nurse, one of the things I’ve learned is that it’s important to talk to the person directly. Not to their care partner. That’s really stigmatizing and really difficult for people living with dementia because they feel like they don’t count and they don’t matter,” says Sakamoto.

Jim wishes people would talk about it with him more often.

“I don’t think people would come up and say ‘How’s your dementia?’ as they would your hip replacement,” he says. “Just acknowledge that it’s here and I live with it.”

He says the acknowledgment isn’t just for him. His wife is also affected. And the couple says community-based programs and friends reaching out asking how they can help go a long way making a difference.

“Dementia is invisible. There’s no hearing aid or glasses or anything to say. Don’t judge people,” says Karla. “Accept that this is how they are but that they still have feelings. They still care about being cared for and they want to be part of the community as much as they can.”