Support for Employees Facing Dementia

Kim Fraser worked at Service Canada in Grande Prairie, Alberta until her job performance started to wane in early 2016.

Neal, her husband of over two decades, took her to see a doctor. After some testing and consultations, Kim was diagnosed with young onset frontotemporal dementia — at the age of 56.

Neal, then 45, was an RCMP officer in forensics and knew his job’s long and precarious hours weren’t conducive to care partnership.

Kim and Neal Fraser

Eventually, when Kim’s health declined, Neal had to request a change in his duties to accommodate his care partner needs. He moved to an administrative role with regular hours (weekdays, 9 a.m. to 5 p.m.). And, once Kim’s health deteriorated further, Neal went on extended leave to better care for her.

Though Neal received support from his employer, he says he didn’t always feel he had enough resources to help him navigate what was to come.

And he is certainly not alone in feeling this way. In fact, given Canada’s aging workforce, more resources are needed now more than ever to help people navigate dementia in the workplace.

This is why the Alzheimer Society of Alberta and Northwest Territories created DementiaAlberta.ca, an online resource for employers and employees to go to for guidance on creating a dementia-inclusive workplace.

The website provides an abundance of information for employees on what symptoms to look for, how to consult a doctor, how to talk to your employer, how to make employment decisions and how to manage relationships at work, including addressing stigma.

Here are some of the website’s tips to help employees navigate dementia in the workplace:

1. Know the signs of dementia

For many people diagnosed with young onset dementia, symptoms often show up at work.

Kim’s supervisor had noticed changes in her abilities to perform familiar work tasks. Because of this, the supervisor was able to speak with Neal, and Kim went on a medical leave to get evaluated — which eventually led to her diagnosis.

This shows just how important it is to know what common signs to look for.

2. Consult a doctor

Once you notice these symptoms in you or a loved one, it’s important to consult with a doctor.

When Neal and Kim went to see the doctor who diagnosed her, he gave them advice based on her symptoms.

“He told me about the need to effectively get our affairs in order as quickly as possible while Kim was still able,” says Neal.

A doctor can also help you to decide whether to keep working, can give information about what workplace accommodations may be appropriate and can help you determine when and how to exit your job, workplace or the workforce.

"When I needed to take time here and there for Kim's various appointments or different things like that, I've had nothing but support."

– Neal Fraser

3. Talk to your employer

Talking to your employer isn’t always easy. But speaking with them can be vital to helping you manage work struggles, to request accommodations to stay in the workplace or to transition out of the workplace.

Even as a caregiver, Neal says he had to “swallow his pride” to ask for accommodations.

“It was difficult to ask, but it was definitely very well received by my employer,” says Neal. “When I needed to take time here and there for Kim's various appointments or different things like that, I've had nothing but support.”

Though he acknowledges that not everyone will be so lucky, he encourages people to talk to their employer.

4. Make employment decisions

A dementia diagnosis for you or a loved one will bring changes to your life, and you may need to make employment decisions.

“I wondered if I would have to take a leave of absence from work, or I contemplated early retirement to take care of Kim, which I know that would have been premature,” Neal says. “I think [my employer’s] approach to supporting me has probably given me another five years or more with them.”

Though Neal chose to stay with the RCMP because of the accommodations offered, he says a resource like DementiaAlberta.ca could have helped them make a more informed decision about Kim’s employment, as she would have liked to continue working longer.

Before making an employment decision, be sure to consider your personal circumstances.

5. Understand the importance of relationships at work

Just as it may not be easy to speak with your employer about dementia, it may be hard to open up to coworkers. In fact, 67 per cent of Canadians said they would feel uncomfortable disclosing a dementia diagnosis to work colleagues, according to a 2017 survey by the Alzheimer Society.

Though you don’t need to disclose anything to your colleagues, they can help to support you during your time of need. This is true for people living with dementia and for care partners.

Unfortunately, stigma about dementia still exists and can be quite impactful for someone living with dementia.

“Kim was hypersensitive to the stigma around dementia,” says Neal, “We were isolated. I don't think we were necessarily seeking out or aware of some of the supports that we've since learned of.”

Neal says he hasn’t experienced stigma at the workplace as a care partner, but that some people have been hesitant to talk to him about it.

"To be able to have the support from my employer was definitely a game changer for me."

– Neal Fraser

“I know certain people knew, but I think that people might've been reluctant to bring it up, not knowing what to say,” he says. “[It was] a little bit of awkwardness more than anything that I ever took to be offensive, hurtful or ill-informed.”

However, if you feel you’re being stigmatized at work because of dementia, remember you are entitled to a respectful and inclusive workplace free of discrimination.

Kim and Neal Fraser

You can speak with the colleague directly or to your employer about your concerns. If your concerns are not addressed, you may be able to file a human rights complaint.

These tips, and more, from DementiaAlberta.ca can help you to manage dementia in the workplace as either a person living with dementia or a care partner.

Kim, now 62, has lived in a long-term care home since 2020.

Neal is back at work and goes to see her every day. His employer still allows flexibility if needed.

“To be able to have the support from my employer was definitely a game changer for me,” says Neal. “It was very humbling to know that there is genuine care from people around you that are in your corner.”