Alzheimer Society campaign focuses on acceptance of dementia

Kenn and Ronda are one of two Saskatchewan couples sharing their dementia stories as part of the Alzheimer Society campaign. (Alzheimer Society of Saskatchewan/Facebook)

Prince Albert Walk for Alzheimer’s taking place later this month

An Alzheimer Society campaign—I live with dementia. Let me help you understand—has people across Canada breaking the silence on dementia stigmas.

It launched on Monday, the beginning of Alzheimer Awareness Month. Canadians with dementia, including in Saskatchewan, are sharing tips on how to understand the disease for the third consecutive year.

“Too often, negative feelings, attitudes and stereotypes surrounding dementia dissuade people from seeking help and discourage others from lending their support,” said Pauline Tardif, CEO of the Alzheimer Society of Canada, in a news release.

“By providing a platform for Canadians to share their stories, we can cultivate empathy and compassion and help break down the stigma so that Canadians with dementia can live a full life.”

A Prince Albert-based professor leading a study on dementia, Bonnie Jeffery, spoke to the Daily Herald when her project was announced in November. She said people living with the disease go through behaviour, memory and social changes.

Because of these changes, “People sort of look at them like ‘What’s wrong with you?’” she said.

Two Saskatchewan couples are sharing their dementia stories in hopes of gaining more acceptance. Their last names are not included on the website, www.ilivewithdementia.ca, where you can read stories from around the country.

Ronda’s husband Kenn was diagnosed with Frontotemporal dementia (FTD) in 2016.

“Being married for 32 years, I knew something was wrong. Kenn could no longer hold a job. He had uncontrollable outbursts with employees and was terminated from three positions in three years,” she wrote.

Kenn had gone to a doctor in Regina, who referred him to the Remote Memory Clinic in Saskatoon.

“I remember the day we went back for the results like it was yesterday. We sat in silence as we received the diagnosis that Kenn had FTD. This was not to happen to us. This was an old person’s disease. Kenn was only 62 years old. Why him?” questioned Ronda.

She explained the disease caused him to have Obsessive Compulsive Disorder (OCD), rage, paranoia and forgetfulness.

Kenn has trouble watching TV shows because he forgets the characters and he often doesn’t complete his sentences. However, he can still look after himself at this point in the disease, doing tasks like laundry, making his bed, cleaning and cooking “on a good day.” But these everyday tasks are now a challenge, and are getting more difficult as the dementia progresses.

George and Patti, also from Regina, shared tips with the public on how to understand dementia. These include being open about a family member having the disease, keeping a routine and not being afraid of asking for help if you’re a caregiver.

Patti said her husband George was diagnosed with what was likely Alzheimer’s in 2015, when he was 69 years old.

She said all aspects of their life are now her responsibility. This includes driving and banking because George is no longer able to remember PIN numbers. Travelling is no longer be viable because going to a new place confuses him.

“Perhaps the biggest challenge is that I have lost my soul mate,” said Patti.

“It’s very difficult to have any kind of conversation. It’s hard to see the disease take more and more parts of George away from me and from our children and grandchildren. He’s not the husband, father and grandfather that he used to be. But we are living with the disease one day at a time and coping as best we can.”

Patti went to the Alzheimer Society’s website seeking resources. She mentioned the Minds in Motion program, which includes exercise and brain and social activities, was particularly helpful.

“This is certainly not the way George and I had envisioned our retirement years, however, feeling sorry for oneself or being envious of other retired couples is not helpful. I think it helps to be accepting of our new normal and not try to fight it,” she said.

The I live with dementia. Let me help you understand campaign began after research indicated one in four Canadians would feel ashamed or embarrassed if they had dementia.

According to the news release, over half a million Canadians are currently living with dementia. In the next 12 years, nearly a million Canadians will have the disease.

“The number of Canadians with dementia is soaring,” added Tardif. “This is an extremely important campaign to pause and think about our attitudes and perceptions and build a more accepting and inclusive society.”

Prince Albert’s 2020 Walk for Alzheimer’s is set to take place on Jan. 26 at the indoor track in the Alfred Jenkins Fieldhouse. Registration is at 12 p.m. with the walk from 12:30 to 1:30 p.m.