Dementia support group celebrates key milestone

NDWG receives community engaged research awardBy: Julio Heleno Gomez

When Bill Heibein was first diagnosed with early-onset Alzheimer's he was told that within five years his condition would worsen and he could expect to end up in a nursing home. More than two decades later he continues to lead an active and fulfilling life, playing music and keeping busy on his farm.

“In many respects I have credited horses with saving me,” the affable 83-year-old declares. “I don't consider myself special. Anybody could've done it had they the opportunity. Having a farm has made a gigantic difference to me.”

Along with defying daunting odds, Bill is also one of the original members of the North West Dementia Working Group (NWDWG). The independent grassroots advocacy group, the first in Canada for people living with dementia, was formed thanks to Lakehead University researcher Dr. Elaine Wiersma.

“It's about giving voice to people living with dementia, maintaining their rights, living well, free from discrimination,” explains Dr. Nisha Sutherland, the group's co-facilitator.

Started 10 years ago, NWDWG brought people living with dementia and their care partners together to discuss self-care. From that modest beginning, friendships were formed and the desire to do more was born.

“They wanted to continue being an advocacy group, provide activities for people living with dementia, be a political advocate for people living with dementia,” explains Sutherland, who's been with the group for eight years and is associate professor in Lakehead's School of Nursing. “If there are dementia strategies or local, provincial policy issues then we address them.”

The latest project, the Building Capacity Project, examined community resources, such as libraries, to make sure they're inclusive for people living with dementia.

In recognition of these initiatives, last year Wiersma, Sutherland and the NWDWG received Lakehead's Community Engaged Research Award.

With 15-20 attendees at their monthly meetings and large Sunday gatherings at the Dementia Cafe, the NWDWG is firmly established and has plenty to celebrate. Over the years they have hosted conferences and visiting scholars, provided presentations on challenging the stigma of dementia, and have been an integral element in projects supported by the Centre for Education and Research on Aging & Health (CERAH).

At its core, though, the essence of NWDWG is companionship, of spending time with people on a similar journey. For Sue Doughty-Smith, introduction to the group came at exactly the right time. Her husband was diagnosed with Alzheimer's in late 2020, during the COVID lockdown.

“I was in a really bad state,” Doughty-Smith confesses. “I thought my world was turned upside down. You just felt you have nowhere to turn to and then there is this group. So when you meet people whose lives are sort of the same, but we're on different steps in our journey, it was wonderful to be with them. You already have empathy for each other, you get to know each other really well and you become better connected. It's a really good group that my husband and I both belong to.”

Along with the camaraderie and frequent get-togethers, Doughty-Smith praises NWDWG participants as people willing to roll up their sleeves to get things done.

“I like it because it's real work,” she says. “Sometimes you talk about things you wish would happen. But this group, once you start looking at things that we can do, you just get going and everybody pools their resources to work on it.”

The latest example is Dementia Gardens: A Place to Grow. An initiative with CERAH, in partnership with community groups such as Chartwell retirement homes, it's in the fundraising stage right now. But the concept is exciting, says Sutherland.

“People living with dementia and their families can come outside and grow native gardens that encourage pollinators, and this can be respite for the family, for students to learn about engaging with people living with dementia and to conduct research,” she says, adding that they hope to start digging this summer.

This is the kind of effort that makes the group so special, says Bill. From the beginning the focus was on the person living with dementia and what they wanted to see done that would be best for them.

“The approach was not from the top down,” he says. “The approach was from the bottom up. 'What do you think will be beneficial to you?' That was the big difference in the approaches.”

When his decline became noticeable in 1998 and he was given dire scenarios, Bill retired from his position at a major Thunder Bay accounting firm to assist his wife full-time at their quarter horse farm near Kakabeka Falls, regularly baling hay and chopping wood. While he has been on medication, his miraculous ability to keep his condition at bay has drawn the interest of researchers at the University of British Columbia, Waterloo, and Lakehead. The latest batch of MRI and CT scans show his decline is no more significant than normal aging.

What's his secret?

The answer: strenuous physical activity on a 150-acre property and engaging key parts of the brain by performing in a band on bass guitar.

“The doctors said to me they don't know for sure what I'm doing, but whatever it is don't stop,” Bill says. “Just by pure chance I'm doing the things I should be doing, what everybody says that someone living with dementia should be doing.”

Pictured: Bill Mercereau, left, along with Bailey Vandorp, a then-Master of Public Health student, and Bill Heibein accept the Lakehead University Community Engaged Research award on behalf of the North West Dementia Working Group.