Valuing the Person

From support in how to navigate the workforce after a diagnosis to a new program aiming to create dementia-friendly communities, we highlight how Canada is working towards becoming dementia-inclusive

Receiving a dementia diagnosis while still active in the workforce can add another stressful layer to adjusting to a new normal. For many, continuing to work may be necessary for financial reasons or because it’s better for their well-being. Whatever the reason, navigating the landscape of the workplace while living with dementia is challenging.

Keith Barrett was 57 years old when he was diagnosed with young-onset dementia in 2016. At the time, he was a co-owner of a company called Partners in Parenting, a child, youth and family-centered support service based in Eastern Ontario. Barrett was responsible for financial and facilities management and human resources, which involved hiring, leading and training teams of people.

After his diagnosis, Barrett began experiencing challenging symptoms, including struggling to retain people’s faces and names, as well as processing new information. But his new normal really hit home while he was doing a corporate training presentation.

“This was a presentation I gave once or twice a month and so I didn’t need to have it scripted, but [suddenly] I couldn’t maintain my sequence of thinking,” he says.

In order for Barrett to continue in his role, he devised solutions with his business partner, Christine Rondeau, that included narrowing the scope of his responsibilities, implementing a cross-referencing system for his tasks and reducing his work week from 40 to 20 hours.

“I’m able to continue to work because Christine and Partners in Parenting supported my focus to be on my abilities and more narrowed to the financial side, and on what I could still do,” he says.

Barrett has since sold his portion of the company to his business partner, but at the time, he was in somewhat of a fortunate position. As a co-owner, he felt empowered to work with his team to implement initiatives that allowed him to continue working — something that was beneficial for his well-being and the company.

“It shouldn’t be an employer telling people what to do. The old adage applies that if you involve everyone in the decision-making, the better off the decision will be,” says Barrett.

People living with dementia still have valuable knowledge, experience and skills to share and Barrett believes there are greater benefits for society as a whole to keep those living with dementia contributing to the workforce for as long as possible.

“The duty to accommodate is hard. It’s hard for the person who needs the accommodation. It’s also hard for employers to make it all fit. But that’s the way our world is, and it’s mutually respectful and, in part, helps to reduce the stigma surrounding dementia,” says Barrett.

Alberta Employers Dementia Awareness Program

Monique Trudelle is the lead for Special Projects with the Alzheimer Society of Alberta and Northwest Territories. Trudelle is heading up the Alberta Employers Dementia Awareness Program, a pilot project that is part of the Government of Alberta’s Dementia Strategy and Action Plan. The program is in its infancy but aims to increase awareness of dementia for employers and employees. Employers have a duty to accommodate legally under the Alberta Human Rights Act and, in some cases, under the Workers’ Compensation Act.

“The aim is to build a practical guide so that employers have a one-stop-hub for information on how to support those living with dementia and their [care partners] and also help those living with dementia access the resources they need to approach their employer with their diagnosis,” says Trudelle.

The project aims to create access to resources such as how to create a dementia-inclusive workplace, advice on combating the discrimination and stigma attached to dementia, respectful language to use and how best to support people living with dementia. It also may include example scenarios, like Barrett’s experience adjusting his workflow.

“A dementia diagnosis doesn’t necessarily mean a person can no longer do their job,” says Trudelle. “It means that individualized accommodations need to be made — because there’s no one-size-fits-all approach to supporting individuals living with dementia.”

Trudelle hopes the program will raise employers’ levels of understanding and knowledge regarding their duty to accommodate while also educating those living with dementia and their carers on their rights.

As for Barrett, he is excited to continue to work for as long as he is able.

“My decline is really slow and that’s a good thing. If this is a trip, I’m going to take the long way around,” he says. “You‘ve got to just run with it.”

Dementia-Friendly Canada: safe, valued and empowered

Launched in April 2019, the Dementia-Friendly Canada project is a four-year initiative spearheaded by the Alzheimer Society of Canada in partnership with the Alzheimer Societies of B.C., Saskatchewan, Manitoba and Ontario. The project is funded by a $940,000 investment from Health Canada and the Dementia Community Investment, administered by the Public Health Agency of Canada. It aims to make communities more inclusive and approachable so Canadians living with dementia can feel safe, valued and empowered. With input from focus groups including people living with dementia, their care partners and community service agencies, the project builds on existing dementia-friendly initiatives across Canada.

For Maria Howard, the chief executive officer of the Alzheimer Society of B.C., community can be defined in many ways.

“A community can be a city, a town or it could be a library or book club. Being dementia-friendly means there’s an awareness of how to support people living with dementia. It means creating a respectful and flexible place,” she says.

Dementia-friendly support could mean providing designated shopping hours, developing a “dementia-friendly zone” logo for participating businesses to display, implementing easier-to-read signage and more accessible environmental design and providing education to debunk dementia myths and stigma.

Some of the highlights of the project for Howard have been how receptive people are to participate, as well as the level of government support.

“The fact that Health Canada and the Public Health Agency of Canada are behind this project [demonstrates] that Canada is taking a firm step forward in becoming a dementia-friendly country, which is what we should be given the number and frequency of people who are being diagnosed with dementia,” says Howard. “We have to get to the place where the acceptance, support and acknowledgement of people living with dementia is normalized.” [ ]