Dementia in the Workplace

We’re letting you go."

These are words nobody wants to hear. But imagine being fired from a job you’d had for decades because your steadfast performance recently started to slip — emails went unanswered, words got jumbled and meetings were forgotten — and you didn’t know why.

You get home to break the news to your partner. Stunned and confused, you grapple together with uncertainty about what the future holds, and you begin your search for answers.

Eventually, you’re diagnosed with young-onset dementia, and it all starts to make sense.

You might think:

• What if this abrupt ending to my hard-earned career could have been prevented?
• What if I had a place to go to seek information and guidance?
• What if my employer would have known the signs of dementia and how to accommodate my needs?

Unfortunately, this story is real. And with the rising number of dementia diagnoses, including the fact that nearly one in 10 persons diagnosed with dementia are between the ages of 40 and 65, more people in the workplace may find themselves in similar situations.

The Alzheimer Society of Alberta and Northwest Territories recognizes this and aims to address the issue head on.

To do so, leaders from the organization embarked on a mission to create a comprehensive resource that would encourage a more dementia-inclusive workplace, where employees diagnosed with dementia who wanted to keep working could be appreciated and supported.

With funding from the Government of Alberta, and after extensive discussions with interested employers, people living with dementia and care partners, a carefully designed website was launched in March 2022.

Introducing DementiaAlberta.ca

DementiaAlberta.ca is a website that provides expert-guided resources, tips and scenarios on addressing dementia in the workplace.

These resources are directed towards Alberta employers who wish to understand and reap the benefits of a dementia-inclusive workplace, and Alberta employees living with dementia (and their care partners) who need information about their rights, options and how to adjust to their new realities.

It highlights essential topics, such as:

• Warning signs of dementia and where to seek help.
• Advice on having productive and compassionate conversations.
• Alberta employment laws and standards and how they apply.
• How to build a dementia-inclusive workplace.
• Community-based and employer-led services, supports and resources for people impacted by dementia.

"An employee can see when an employer puts forth an effort to support its staff — it goes a long way in retaining staff and building a good culture."

– Tyson Joyce, Senior Director of Disability Management, LifeWorks

Guidance for employers

DementiaAlberta.ca provides valuable and shareable resources for employers and supervisors looking to learn about the benefits of promoting a dementia-inclusive workplace.

Photo courtesy of Getty Images.

Tyson Joyce, the senior director of disability management at LifeWorks, was part of the advisory committee formed during the website’s development period. At the time, he worked for the City of Edmonton and attests to the value and opportunity the website provides for employers.

He gives his top three reasons an employer should use the website’s information:

1. Employers have a duty and a legal obligation to accommodate.
2. Staff retention should be a priority.
3. Building a positive work culture is essential.

“You spend so much time recruiting, training and investing in people … you don’t want it to walk out the door even if they have some health issues,” says Joyce.

“An employee can see when an employer puts forth an effort to support its staff — it goes a long way in retaining staff and building a good culture. Be the employer that people want to work for.”

The website can also help those employers looking to learn how to handle dementia-related experiences while working with the public.

Christene Gordon, the provincial lead of client services at the Alzheimer Society of Alberta and Northwest Territories, provides an example of this type of situation:

“What do you do if you're a bank teller and you notice a person coming into the bank everyday looking to see how much money they have? That's a little bit of a red flag. As the organization or company, you may wonder where to go for resources or information … I think [DementiaAlberta.ca] is a great resource to have.”

To get the information out there, the Society recommends that employers refer to the website’s content as part of:

• Employee onboarding.
• Supervisor and employee training.
• Diversity, equity and inclusion training.
• Workplace health, wellness and accommodation resources.

These resources can help to promote a more dementia-friendly workplace and build a positive environment for all.

Support for persons living with dementia

DementiaAlberta.ca is ultimately meant to better the quality of life for people with dementia, no matter their circumstance.

Photo courtesy of Getty Images.

While some people who are diagnosed want to leave the workplace right away, some want to leave gradually to support their employer or to plan for a proper exit. Others find it good for their physical and mental health to work as long as they can, and some feel they don’t have a choice financially because they’re still supporting a family.

The website highlights all the options, so a person can make the best decision for their own life.

Regardless of a person’s decision, it’s important to work with an employer to seek information about employer-provided benefits, to ask for accommodations or to plan for a positive transition out of the workforce.

"We want people to be as informed as possible about what their rights are and what rights the employer has, and how you work together to try and come up with the best solutions."

– Monique Trudelle, Lead of Special Projects, Alzheimer Society of Alberta and Northwest Territories

Joyce says employees should keep themselves informed about what an employer’s duties and roles are, and about their rights as employees.

“[Employees] need to recognize that they should be able to work with their human resources area to keep working, to keep being involved in the day-to-day and to be engaged in things while seeking care, help or prevention,” says Joyce.

“I think there's value in knowing that there's heightened support available in organizations and that they have a responsibility and a duty to accommodate people with dementia with their needs.”

Photo courtesy of Canva.

These types of accommodations can include:

• Job duty and role transfers.
• Schedule flexibility, such as reduced or changed hours.
• Colleague check-ins or other social supports.
• Possible modifications to job equipment or technology.
• Instruction changes to make the job easier to understand.
• Reduced distractions or a quiet area to take a break.

Monique Trudelle, the lead of special projects at the Alzheimer Society of Alberta and Northwest Territories, says the website’s value comes from its ability to educate.

“It makes one less stress in somebody's journey with dementia to find information and understand what’s available to them and what they are able to continue to do or choose,” she says.

“We want people to be as informed as possible about what their rights are and what rights the employer has, and how you work together to try and come up with the best solutions.”

It’s important to note that care partners to people living with dementia may also need job accommodations as they adjust to their roles outside of the workplace.

For example, when Gordon helped her father care for her mother who lived with vascular dementia, she had to seek accommodations.

“If I didn't have the understanding of my employer, the Alzheimer's Society, to be able to flex my hours and work part-time to support my parents, I would have probably had to leave work,” she says.

DementiaAlberta.ca is also meant to be an all-inclusive place for care partners to go to for information.

"They bring a lot to the workplace, but I also think we have a great deal to learn from people with dementia."

– Christene Gordon, Provincial Lead of Client Services, Alzheimer Society of Alberta and Northwest Territories

Expanding DementiaAlberta.ca

In the future, Trudelle says the Alzheimer Society hopes to expand the website’s information by working with more key players and talking about other ways it can be useful.

“This is just the start of trying to encourage all employers and all businesses to be dementia-inclusive,” she says. “We want employers to be aware that people with dementia or cognitive impairment are probably in their workplace, and to recognize what they can do.”

Photo courtesy of Getty Images.

Though more time is needed to see how DementiaAlberta.ca is impacting dementia in the workplace, Gordon says it has received some positive feedback, including from care partners wishing they would have had access to the site while dealing with these issues themselves.

She agrees that one of the website’s best features is that it helps give people diagnosed with dementia the knowledge that accommodation can occur, and that indeed everybody can benefit from a more flexible work environment.

“[It can] help them feel useful and that they're making a contribution,” says Gordon.

“They bring a lot to the workplace, but I also think we have a great deal to learn from people with dementia about living in the moment, about patience and about tolerance.”