A diagnosis of dementia can be overwhelming, especially if you’re still working. But it doesn’t necessarily mean you have to give it all up right away. There may be options.
Roger Marple was crunching numbers on an Excel spreadsheet, a task he had done many times in his role as the Site Services Supervisor for Stores at Medicine Hat Regional Hospital for Alberta Health Services (AHS). He looked it over three times and e-mailed it to Ryan Thomson, the South Zone director for AHS. Ninety seconds later, Thomson sent it back, asking, “What is this?”
When Marple opened the spreadsheet again, it didn't even make sense to him. Thomson called Marple. “He was getting calls from people saying I seemed off … he wanted to know what the problem was,” says Marple. “I get it, because I was in management myself, so if an employee was experiencing challenges, I would try to understand why.”
By the end of the conversation, they both agreed something wasn’t right; Marple needed to seek medical help. After a year of undergoing all kinds of tests that checked for everything from vitamin deficiencies to a brain tumor, he finally ended up with a diagnosis of dementia. It wasn’t a total shock because it had been mentioned as a possibility by his doctors.
“But it is still pretty traumatic,” says Marple. “It sneaks up on you.”
Marple was 56 years old when he was diagnosed. He had worked with AHS for more than 20 years, and he wanted to stay in the workforce. So, when he disclosed his diagnosis to Thomson, they had many conversations to figure out how to move forward.
“With the rapidly aging population and improved diagnostics, the likelihood of people diagnosed while they are still working is going to increase.”
– Josephine McMurray
Among the first steps for Marple was sharing his diagnosis with his team; he had individual conversations with staff, in addition to a larger staff meeting. Some of his team members stepped up to support Marple with help as needed. As well, he coped day-to-day with a combination of low- and high-tech options, using sticky notes and his Outlook Calendar quite a bit.
As for Thomson, he would check in regularly with Marple.
“I’d ask him if he was having a good or bad day,” Thomson says, adding that he believes these calls forced Marple to be honest with himself, too. Thomson made it easy for Marple to reach out: he set up a “phone-a-friend line,”a fun take on the TV quiz show “Who Wants to Be a Millionaire,” which offered contestants a chance to win a million dollars, and they could call someone if they needed help answering a question.
So, if Marple had a question about something, he could send an email or call Thomson. “Humour was another principle we applied on a regular basis — sometimes you just have to smile and laugh,” says Thomson.
Sometimes Marple would share his computer screen with Thomson, so that Thomson could show him the first few steps of how to do something, then Marple would immediately remember the next 20 steps.
“There were instances where he would just get frustrated and feel embarrassed, so we took that embarrassment out and I just said, ‘There’s a reason why you're not processing this right now,’” says Thomson.
Supporting an aging workforce
In Canada, working with dementia is going to become more and more common.
“With the rapidly aging population and improved diagnostics, the likelihood of people diagnosed while they are still working is going to increase,” says Josephine McMurray, associate professor at the Lazaridis School of Business & Economics, Health Studies, Wilfrid Laurier University, in Brantford, Ont.
McMurray is one of the co-principal investigators in an ongoing study called Cog@Work, which is exploring if and how employers are preparing to optimize the productivity of an aging workforce, in particular for workers diagnosed with Mild Cognitive Impairment (MCI) or Early Onset Dementia (EOD).
“The focus of our research is the perspectives of the employer, as their unique opportunities and challenges are what drive both their and their employee’s experience, and because we want the study and our results to have practical application,” says McMurray, who goes on to note that they currently have a network of almost 200 individuals from 123 different organizations.
McMurray and the rest of the Cog@Work team are interested specifically in how employers can develop more sustainable workspaces — the measures they can take — so that people with MCI and EOD can remain employed and productive if they wish.
Marple, who is a member of the research team and will also be the focus of a case analysis, says that one thing he really appreciated when he left work was being able to leave his job on his own terms. At one appointment, about two years after Marple’s initial diagnosis, his doctor told him he should leave work immediately, but neither Marple nor Thomson wanted that.
In fact, Thomson called his HR team and then sent a letter outlining all the reasons why Marple shouldn’t leave work. This led to Marple being able to stay on for another month, giving him time to tie up loose ends, say goodbye to people and to mentally prepare himself.
“With conversations that were done ahead of time, it gave me time to think about it and prepare myself that one day I was going to have to walk away,” says Marple. “And that was very helpful.”
WORKING WITH DEMENTIA: SETTING UP FOR SUCCESS
What Employers Can Do:
Hold frequent check-ins. Embrace an open culture, so an employee doesn’t have to feel that they have to hide things.
Support the employee. Ask what support or accommodations an employee feels they need, for instance, it might be a workspace with fewer distractions. An occupational therapist may be able to make suggestions.
Build awareness. There are organizations that can helpeducate staff and coworkers about dementia.
What Employees Can Do:
Be honest. If you need help, let your HR department and your supervisor know. If you feel your current job is not doable, discuss the possibility of alternatives.
Technology can help. Set up reminders with alerts on your smartphone or put everything in a calendar to remember appointments or meetings.
Get a diagnosis. If you’re transitioning out of the workforce, do get a medical diagnosis first, as this may help you qualify for benefits after you leave.
Reach out. If you do leave work, reach out to family, close friends and organizations who can help: “Seek out people who have been through it, who can provide advice and empathy,” says McMurray.