How to approach work when you are living with young onset dementia

One of the most pressing issues many people face after being diagnosed with young onset dementia—or developing related symptoms—is their work or career path.

Work roles can have many sides: emotional, identity-related, financial, familial and more.

Work can also be the place where people first start to notice their young onset dementia symptoms before diagnosis.

Here are some things people living with young onset dementia have told us about around work roles, symptoms and diagnosis.

Be aware that Canadian law requires employers to try accommodating your disability

And the Canadian Human Rights Act says that employers must accommodate employees with disabilities “up to the point of undue hardship, taking into account health, safety and cost.”

“By law, if someone has an impairment of some sort there's an obligation for the company to try and work through it with them,” says Keith Barrett, who lives with young onset dementia in Ottawa.

“They have an obligation to look at the accommodation, where it makes sense. That’s a legal requirement. And if that means going down to part-time, that can mean going down to part-time.”

Understand that in some provinces, independent contractors are also covered by “duty to accommodate” rules

Community Legal Education Ontario has an informative webpage about coverage of independent contractors under accommodation rules.

“Ontario's human rights laws say that everyone has the right to be treated equally and not be discriminated against at work for personal differences listed in the Human Rights Code,” says CLEO.

“These laws protect employees, independent contractors, and volunteers at work. You're protected:

during the negotiation and the offer of a contract to perform work,
when you accept the contract,
in the terms of the contract,
while you're working under the contract, and
in how that contract ends

CLEO adds: “You're protected from discrimination even if you have a verbal, unwritten contract to perform work.

These rights mean that, if you're an independent contractor and you have a disability, the company or organization you work for must do what they can to make things fair for you.”

Your local Alzheimer Society staff can help you figure out whether your own provincial or territorial labour laws also cover independent contractors under the “duty to accommodate” rules.

Know that there can be many different ways to accommodate young onset dementia on the job

The new website Dementia in the Workplace was created by the Alzheimer Society of Alberta and the Northwest Territories to help Alberta workers and employers. But it also contains a robust list of workplace accommodations that could be useful to workers and employers in other parts of Canada too.

The Dementia UK website also has some great examples of practical ways accommodations might happen for young onset dementia.

According to them, it could include “allocating tasks individually, rather than all at once; giving advice on simplifying routines; providing a quieter workspace with fewer distractions; enabling supported homeworking; offering regular rest breaks during the day; providing assistive technology, e.g. alerts, reminders, voice recognition software; setting up a buddy scheme and regular support sessions; a reduction in hours (if needed or requested); a move to a role with less responsibility (if needed or requested).”

The BrightFocus Foundation in the US also offers these suggestions for accommodating dementia in the workplace:

“Incorporating reminders into [the] day – written or verbal
Dividing large tasks into many smaller tasks
Providing additional training when there are workplace changes
Keeping the workspace clutter free
Reducing the number of hours worked per day or week
Changing the time of day worked”

The right accommodations for you will depend on your symptoms and work role.

Contact the Canadian Council on Rehabilitation and Work for free accommodations help

In asking for accommodations, you are not alone. The 2017 Canadian Survey on Disability showed that “Of employees with disabilities aged 25 to 64 years, more than 1 in 3 (37%) required at least one workplace accommodation to be able to work. This represented just over 772,000 Canadians.”

The Canadian Council on Rehabilitation and Work has an informative page for people with disabilities of all kinds. This page includes thoughts on when and how to disclose a disability to an employer.

The council also has a free Job Accommodation Service. This service offers free support to employers in coming up with an effective accommodation plan.

Read or listen to stories of how job adjustments can play out in real life

Here is one example of how job adjustments can play out in the life of a person with young onset dementia.

“I retired early, but even when I was working, the last two years, my scope was narrowed,” Keith Barrett of Ottawa says. “I just focused on the accounting side. I stopped with facilities, I stopped the HR stuff, stopped [with] the policies.”

“I focused on what I was most comfortable with, and that was a good thing. I had less frustrations, because I was doing that type of task for about 20, 25 years, so it really sticks well.”

Keith also had a good relationship with his business partner from many years spent working together. And he was comfortable sharing with them about his issues and making a plan for next steps.

“I was fortunate that my business partner was very supportive and allowed me to kind of shave away some stuff, because I was slower,” says Keith.

More real-life stories about work and dementia are available on the Alzheimer’s Society UK website. A longer article about work decisions for some people with dementia in the US—including a university basketball coach—is available at Brain & Life magazine.

Also think about networking directly with another person who is living with dementia and who also continues to work. They could have strategies for you to consider and implement.

Deciding to take a leave can also be a good option for some people living with young onset dementia

In some jobs, it’s more difficult to work out an accommodation for young onset dementia.

Mike is someone who had a prominent and somewhat public work role before he received his young onset dementia diagnosis.

After a doctor identified some of the thinking issues and muscle control issues, one of Mike’s friends, who had legal expertise, advised that the risks involved with him staying at work would be too great.

Mike recalls that his friend told him, “You probably need to stop [working]. You’re a great guy, but you know this: it takes 30 seconds of screwed-up behavior that somebody catches on social media, and it damages you, the program, and the institution and you can't put people in that position.”

So Mike approached his boss and requested a full-time leave to get a handle on his health situation. The response was positive, with the door open for Mike to a return if things can be managed well.

Assess any opportunities for early retirement

Clay worked for decades in a safety-focused role before noticing that his energy and work skills weren’t as good as they used to be.

“I … wasn’t performing at work as well as I had at one point,” Clay says. “I could do my job, but I wasn’t as sharp as I had been for 39 and a half years doing that kind of thing. I guess I wasn’t doing things to my normal high standards was the best way to put it.”

These symptoms and others eventually resulted in a diagnosis of Lewy body dementia—but not before Clay took an opportunity for early retirement.

“When COVID hit, the company I work for offered early retirement packages to try and get people out the door rather than lay off young people. At that time, I hadn’t been diagnosed—but I knew subtly that there was something going on,” Clay says.

“I was actually 60 and a half. I put in 40 years at the company and did really good—never had any serious accidents or incidents and I had a really good career.”

“In hindsight looking back, I couldn’t have timed it any better. I wasn’t having to deal with work issues like whether I was underperforming,” Clay says. “Up until the day I retired I was still highly functional. I was very fortunate that the timing did work out and the more serious symptoms happened after I retired.”

Using your workplace’s short-term or long-term disability programs—if any exist—can be another good option

If disability programs do exist at your workplace, and if your doctors can provide proof of your diagnosis and other facts, you may wish to apply for short-term or long-term disability.

Tina, who lives with young onset dementia in Winnipeg, took this route.

For her, it came after a period of time spent working while symptomatic.

“I'm very lucky that yes, there were benefits available to me,” Tina says.

What she did was she used up her accrued sick leave first, and then applied to the disability program at her workplace.

Tina’s advice to others facing work decisions is “Know when you're going to leave. With everybody feeling good about it, rather than trying to hold on too long … I think if you have the opportunity to walk away with a smile on your face, do that.”

Whatever you choose, a trusted advisor can help in the process of making work decisions

There is a lot at stake when it comes to work and income. And if you are experiencing or are concerned about thinking issues or memory problems, having a second perspective can be especially helpful.

This advisor can be a trusted friend, family member, partner, neighbour or community contact. It can be a psychiatrist, psychologist or counselor if you already see one regularly.

It can be a professional who works at the Alzheimer Society in your area, or at different advocacy organization related to your particular diagnosis.

It can even be a counselor through your company’s confidential Employee Assistance Program (EAP) if you have one.

Whoever it is, it needs to be someone who you can trust to have your best interests at heart. That perspective can invaluable.

Tina, who lives with young onset dementia in Winnipeg, says, “Talk with a friend or a family member to get your head around what you need to do in these situations.”

If you wish, share about your health issues with trusted coworkers

When Doug, an electrician in BC, started developing symptoms of young onset dementia prior to retirement, he decided to share some of his issues with coworkers.

Reflecting on it now after retirement, Doug says the decision was a “good” one.

Today, Doug jokes that his coworkers then gave him a place where he basically could tinker and putter for the remaining year until retirement was due. Humour aside, it’s clear Doug felt supported by them.

Tina, who worked in a large administrative department, didn’t want to share her diagnosis with the entire staff.

But she did decide to share her symptoms and diagnosis with her closest coworkers.

“I shared an office with two other people and I let them know,” Tina says. “And they were actually really supportive of me. Very kind to me and helpful.”

Sharing this article about myths and realities of dementia can be a good way of educating trusted coworkers on the topic.

When in doubt, talk to the experts at your local Alzheimer Society

Your local Alzheimer Society can connect you with peer support, counseling and expert insight related to work roles, disability accommodations and young onset dementia.

To reach them, just look up your local society’s contact information at alzheimer.ca/find.

Or reach our national information and referrals line at info@alzheimer.ca and 1-855-705-4636, and the team there will get you linked up with your local Alzheimer Society experts.