When Walter Strauss, a certified accountant — who with his wife, had spent years creating a magazine with over a million subscribers — started to have trouble with numbers his family knew something was wrong.
“Nobody wanted to believe it, but something wasn’t right,” says Strauss’s daughter, Helga. The family ended up moving back to Canada from the Bahamas to be closer to family. It wasn’t until a year later, in 2018, when Strauss received a formal diagnosis after a long process of tests.
That’s how dementia starts to present itself in people says Tara Speirs with the Alzheimer Society of B.C.
“All of us from time to time forget things,” she says, adding it’s more significant forgetfulness that can be indicative of the disease. “[For example] the person who always starts their day by making coffee and wakes up one morning [not knowing] how to work the coffee maker.”
Speirs facilitates a fitness and social program for people living with early-stage dementia and their care partners called Minds in Motion, where she met Strauss.
“When I approached Walter about being a spokesperson for the campaign, he thought about it and the first thing he said to me was ‘Can I tell people I don’t want them to tell me to fight it? I just want to be me’,” says Speirs.
It’s one of the biggest messages the Strauss and Speirs want to share with the public during Alzheimer’s Awareness Month — just because you’ve been diagnosed with the disease, doesn’t mean you can no longer live well.
Since Strauss’s diagnosis, he’s developed an interest in music and even takes line dancing classes in addition to the Minds in Motion class. Helga has learned she can’t correct Strauss when he forgets something and says it’s become about “letting go and enjoying their time together.”’
One in four Canadians surveyed say they would feel ashamed or embarrassed if they had dementia, which is what spurred the need for the Alzheimer Society’s new campaign: I live with dementia, let me help you understand.
Speirs explains there are many kinds of dementia, but says the thing they all have in common is the brain cells and neuropathways in people living with the disease, are dying. The cause of dementia is unknown, with only a small portion of the population diagnosed with the genetic disease Alzheimer’s.
According to the Alzheimer Society, more than half a million people in Canada are living with dementia today, with many more family members who provide care affected as well. Research shows that in the next 12 years, nearly a million Canadians will be living with dementia.
One of the biggest factors leading to the stigmatization of dementia, says Speirs, is how isolating it can be once you’ve been diagnosed. For the first half of the Minds in Motion class, a fitness instructor leads participants in 45 minutes of seated exercise, but the last 45 minutes are focused on connection.
Speirs leads the group in conversation focusing on seasonal topics, most recently the theme was what winter and the holidays were like during the participants’ youth. Another favorite is music bingo with songs from the 1950s.
“I’ve been doing this job for four years, and it’s really difficult to see the disease progressing,” says Spiers. “It’s not a nice disease, and it’s a really cruel reality so we just try to maintain quality of life for as long as possible because there is no cure.”
Minds in Motion is run out of six recreation centers across Greater Victoria, for more information on the program visit bit.ly/2FX5QgZ.
The Alzheimer Society also offers many other support services for those living with dementia and their care partners, such as an outreach call system, a first link dementia helpline — which offers services in Cantonese, Punjabi and Mandarin — along with support groups. For more information on the Society visit alzheimer.ca/en/bc .