Blog – cog@work

Age Discrimination, Dementia, and the Workplace: Understanding Human Rights Law and Disability Rights In Canada

Posted: March 21, 2022

Author: Krista James, National Director, Canadian Centre for Elder Law (CCEL), @KristaElan

“He said to me, ‘I’m not telling them I have Alzheimer’s’… You know, there’s a lot of people who are not saying anything because they don’t want to be discriminated against.”
Person living with dementia
CCEL, Conversations about Care (2019), at 32

Human rights laws prohibit discrimination in employment in Canada. They prohibit discriminatory treatment, including termination of employment, based on protected grounds. The grounds listed in all Canadian human rights laws include disability and age. These laws can be used to protect the employment rights of people living with dementia or mild cognitive impairment. In this blog post I set out the legal context and then discuss the implications for people living with dementia in terms of termination and the right to accommodation of their abilities and needs across the dementia journey.

Human rights law in Canada

Every jurisdiction in the colonial construct known as Canada has human rights legislation. This legislation applies to employment relationships. Which human rights law applies to a particular work environment depends on where the person works and what kind of sector they work in. Some sectors, such as telecommunications, railways, and banking, are federally regulated sectors governed by the Canadian Human Rights Act. Most employment relationships are governed by provincial and territorial human rights laws, such as the BC Human Rights Code. Each human rights law has a lengthy list of protected grounds. While there is some variation across these laws, they all include disability as a protected ground.

What does disability mean?

Disability is not defined in most human rights statutes but courts and tribunals have interpreted disability very broadly. The Supreme Court of Canada has said that disability “may be the result of a physical limitation, an ailment, a social construct, a perceived limitation or a combination of all of these factors.”

Statutory definitions of disability, though rare, also tend to be broad. For example, Ontario’s Human Rights Code defines disability to include (s 10):

Any degree of physical disability, infirmity, malformation or disfigurement…;
A condition of mental impairment or a developmental disability;
A learning disability…;
A mental disorder; or
Any injury or disability for which benefits were claimed or received…under the Workplace Safety and Insurance Act 1997.

The United Nations Convention on the Rights of Persons with Disabilities states that “[p]ersons with disabilities include those who have long term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others” (art 1).

In this sense, as the Law Commission of Ontario has pointed in its Framework for the Law as It Affects Persons with Disabilities, the concept of disability includes “both the experience of socially constructed (or environmental) barriers and the embodied aspects of the experience of disability” (19). Advocates are increasingly explaining that disability is not so much an inherent limitation of an individual but rather the result of the interaction between a unique person and their environment. The concept of disability exists because so any aspects of our communities, policies, and practices are ableist: that is to say, they are constructed based on some notion of “normal” and they privilege certain needs and talents.

These approaches to disability capture the experience of living with dementia. As such, professional and advocacy sectors have embraced the notion that dementia can be a disability. The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, commonly known as the DSM-5, includes dementia under the equivalent term “major neurocognitive disorder.” Both Dementia Alliance International and the Alzheimer Society of Canada have taken the position that dementia can be a disability.

Age discrimination in Canada

Mandatory retirement was abolished years ago. Ontario eliminated mandatory retirement in 2006, five years after the Ontario Human Rights Commission issued a report calling for legislative change. Subsequently all Canadian jurisdictions eliminated legal mandatory retirement.

However, the relationship between age discrimination and human rights law remains complex because most human rights laws permit age discrimination in some limited contexts, such as in the provision of employment benefits and related insurance. These exceptions were created to protect the constitutionality of age cut-offs built into long term disability or pension plans. In 2018 the Ontario Human Rights Tribunal found that terminating an employee’s health, dental and insurance benefits at age 65 was unconstitutional in Talos v. Grand Erie District School Board. As a result, we may see a shift in this area of law in the future. In the meantime, while discriminatory termination linked to age and disability may be illegal, terminating all employment benefits might be legal. The CCEL discusses which provinces and territories permit age discrimination in benefit plans and the significance of the Talos decision in this CCEL blog post.

What if you have an employment contract or collective agreement?

Human rights are quasi-constitutional. This means they cannot be waived, even by agreement, and other laws must comply with them. Both unionized and non-unionized workers may file a complaint with the appropriate human rights tribunal where they believe they have experienced discrimination in employment. A union can also file a grievance under the collective agreement on behalf of a worker when they think discrimination based on disability or age has occurred. Labour arbitrators, human rights tribunals, and courts interpret and apply human rights laws.

Dementia and workplace discrimination

As the Canadian Human Rights Commission explains, discrimination is an action or decision that treats persons or a group badly for reasons such as their race, age, or disability. Discrimination can occur when treating someone the same as others, or differently, results in a disadvantage or barrier to participation. Intention (to discriminate) is irrelevant to a finding of discrimination; what matters is whether the impact of the decision, rule, or policy was discriminatory. Employers can discriminate without meaning to do so if a neutral rule has a differential impact on an employee who is older or who has a disability.

The law regarding disability discrimination and accommodation is quite settled. A person raising discrimination must establish they have experienced an adverse impact linked to one or more protected grounds. Once this has been established, the burden shifts to the employer to justify the circumstances as reasonable. To do so, the employer must prove they accommodated the person’s disability and age (or other ground) to the point of undue hardship. This legal test is explained by the Supreme Court of Canada in British Columbia (Public Service Employee Relations Commission) v BCGSEU.

Once disability is established, most human rights workplace disability cases hinge on accommodation and hardship, which means roughly, did everyone do their best, within reasonable limits, to shift the circumstances to support the person with a disability to contribute meaningfully to the workplace and keep their job? Accommodation can involve modifying duties, changing work hours, or accepting to be trained for a new role. Courts and tribunals will require employers to provide evidence quantifying actual anticipated costs and describe real challenges not tainted by worker reluctance to work with a person with a disability. This means that generalized statements regarding difficulty, risk, or cost are not enough.

Accessibility legislation in Canada

Canada, Manitoba, and Ontario have taken further steps to create accessible community laws that allow a person living with a disability to ask for reasonable accommodation of their disability without first proving discrimination by way of a human rights complaint. These laws are the Accessible Canada Act, The Accessibility for Manitobans Act, and the Accessibility for Ontarians with Disabilities Act. This shift is valuable because alleging discrimination can be stressful and legal processes can be expensive and too slow for people living with degenerative conditions who just want to keep working for as long as they can.

Working together to find a solution

Workplace accommodation of people living with dementia or mild cognitive impairment requires collaboration, creativity, and open-mindedness. A worker is not entitled to accommodation unless they can first establish discrimination. A person living with dementia must be willing to disclose information about their disability, participate in assessments of their abilities, attend relevant meetings and appointments, and accept changes in their work responsibilities. In a world where people living with dementia face stigma, sharing a diagnosis of cognitive impairment can be hard, but employers are not expected to accommodate without information about people unique needs and abilities.

Sometimes the journey toward a diagnosis can be hard and slow. Recent cases suggest that an inconclusive diagnosis could be adequate so long as the medical expert can confirm that the worker is experiencing some kind of medical or health issue, and they are working toward a clear diagnosis. This approach opens up a door for accommodation in advance of the dementia diagnosis.

For more on discrimination and aging, check out this three-part blog series by the CCEL:

Age Discrimination and the Human Rights Process in British Columbia

Age Discrimination in the Employment Context in British Columbia

Age Discrimination in Other Contexts in British Columbia

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After retiring from AHS, Roger has remained a tireless advocate for people living with dementia. He has made it his mission to dispel myths and stigma associated with dementia and shares a message of hope, that you can live well with this condition regardless of its challenges. He supports related initiatives and research across Canada by volunteering his expertise, sitting on the Board of Directors for Alzheimer’s society of Alberta and Northwest Territories, he is a member of the Older Adult and Caregiver Advisory Committee for AGE-WELL and an esteemed collaborator on the Cog@Work project!

In Conversation with Roger Marple: Living and Working Well With Dementia

Posted: February 14, 2022

Roger Marple, a collaborator on the Cog@Work project, worked for Alberta Health Services (AHS) for over 23 years and was a Site Services Supervisor for Stores at Medicine Hat Regional Hospital when he was diagnosed, at 56, with early onset dementia. In our conversation with Roger, he candidly describes his journey working with dementia and provides insights into how he worked closely with AHS and his manager Ryan Thomson, to create a sustainable and successful path forward, after his diagnosis.

Cog@Work: Can you tell us about your career at Alberta Health Services?

Roger: Well, I worked for them for over two decades [as a Site Services Supervisor], worked my way up through the ranks, good work ethic, all that, landed in management positions over the years. I oversaw Southeast Alberta. Ryan and I worked together managing this area of Alberta. It’s a job I loved, that’s for sure.

Cog@Work: What were some of the tasks and responsibilities you had in this role?

Roger: Jeez. It was big. I had five hospitals underneath me, that I was responsible for. Any other AHS facility, public health, places like that. Basically, if you practice medicine, you come through me. It was my job to make sure that everything went smoothly. I designed cart systems, improved efficiencies, saved a ton of money for Alberta Health Services due to my experience. It was a very gratifying job.

Cog@Work: Before you were diagnosed with early-onset dementia, what are some of the examples or experiences that you noticed at work, that were, perhaps out of the ordinary and tipped you off that something wasn’t right?

Roger: The reality is, the doctor told me that things had been probably stirring in me for 15, 20 years before things came to a head, where I actually walked into a doctor. You got to understand that we have this remarkable workaround towards challenges we may experience. We don’t even know we’re doing it. For example, with failing memory, I didn’t think anyone noticed it, but I leaned on technology more, reminders, but I had no idea other people were noticing it. At the end of the day, I didn’t even go in to see my doctor until other people brought up concerns.

Cog@Work: Were those other people your colleagues?

Roger: Yes. Did I ever tell you that spreadsheet story? I had a different boss [from Ryan Thomson] at the time. I sent a spreadsheet, and I was just as shocked as my boss was, I couldn’t explain why my work wasn’t up to par. A “I can’t believe I just sent that” kind of reaction. At the end of the day, it was him who said, “You better see a doctor. Something’s not right.”

Cog@Work: No other colleagues had ever brought it up with you?

Roger: No, not to me directly, but they had brought it up with my boss. He said he had a number of phone calls from different colleagues asking if I’m okay. “Is Roger, okay? He seems off,” that kind of thing. I do know that other people had noticed it at that point.

Cog@Work: What was causing them to call your boss?

Roger: I don’t know…he doesn’t seem right. It’s not the old Roger. That kind of impression I got from that boss.

Roger: When I saw a neurologist, he diagnosed me with MCI right away. That was one of the first things he said, “You have MCI,” and of course, I went to Dr. Google after the appointment and looked up what that was.

Cog@Work: What was your motivation and why was it so meaningful for you to continue work after these diagnoses?

Roger: You just got a diagnosis. It’s a life-altering diagnosis. It takes a while to get your head around a diagnosis like this. At that time, I just wanted some normalcy in my life. It was super important. You got to understand, I don’t know if I’m an exception [to the rule], but I loved my job. I loved coming into work every day, especially after meeting Ryan, I didn’t want to leave the job. A lot of people would have been all over that, especially people who might not enjoy their job. For me, no way, no how. I made that clear to him. I wanted normalcy in my life. I just want to keep working in a job I loved at the end of the day.

Cog@Work: Can you describe what your concerns were leading up to disclosing the diagnosis to Ryan?

Roger: You know, I thought long and hard on that, actually, you know what’s the benefit of me sharing a diagnosis? I finally came to the conclusion, that it would be more than likely easier for me just to be transparent and honest and share with them and in my mind, only fair to Ryan. I was thinking, what’s fair?

Then, Ryan and I were just feeling each other out at this point. He’s new to his position and that was the worst possible timing for a diagnosis and having a new boss. One thing I can safely say, I truly admired Ryan. I was excited to be working with him. We were like-minded in many ways. I love his style of management. He didn’t micromanage. He threw out the work at you, you prioritize, you decide. At the end of the day, it better be done. I liked that style of management. We were getting along really good. I didn’t know much… but I did look up my rights. I wanted to know what my rights were and how could be let go over questions like that. I knew some of them because I’m in management myself and adhered to all the rights that we all have.

Cog@Work: It sounds like you had a good rapport with Ryan.

Roger: Oh, yes. The first thing he said to me on our very first meeting, he goes, “Do you have any sticking issues you just love to get that sorted out? Is there anything sticking in your crew?” I shared one particular issue with him. Then after hearing that, he said, “Anything else?” I mentioned a few other things. He says, “It’s my job to give you the tools you need to do what you need to do and, I’m going to do that for you.” How can you not love a guy like that?

Cog@Work: Of course! What characteristics did Ryan possess, as a manager, that made you more or less willing to disclose the diagnosis to him?

Roger: Well, the reason I felt comfortable, or at least less anxiety, sharing a diagnosis such as that, is because of who Ryan is. It all boils down to relationships. You know what I mean? Even in that earlier stage, one thing I knew about Ryan, he had incredible moral integrity. he cared and that is who he is by nature. I felt comfortable. Safe to let him know what’s going on, and like I said, it’s fairness. It’s not all about just me, it’s about what’s best for Alberta Health Services too. That was another motivator to share the diagnosis.

Cog@Work: It sounds like you had a deep respect for the organization itself, as well.

Roger: Very much so. Alberta Health Services is really into values. That’s the drum, we as healthcare workers, all march to, boom, boom, boom, these are our values. I read them over three times and that was another reason, because of their high standards that they hold as an organization. At the end of the day, if you got a diagnosis like this when you think about it, who better to share it with? They’re a health authority! For them, as an organization, they’re walking the talk. Even before going to Medicine Hat, I had a deep respect for who they were as an organization, and I had a deep respect for Ryan, for who he was as a person. All the above, is why I shared the diagnosis.

Cog@Work: After disclosing your diagnosis to Ryan, were there any accommodations for work?

Roger: One thing Ryan made real clear right from the beginning is that “At the end of the day, Roger, you have to be able to do the job.” Okay. Totally fair. Of course, that would be an expectation. From an accommodation point of view, Ryan would ask, often, actually, “What can I do to help you?” It came up at least once a week. It was always on his mind. One thing I did get, it wasn’t a token “How can I help you?”. It was, honest to God, sincere, “How may I help you?” I could feel that from him, but at first, I couldn’t figure out what to ask of him. I drew a blank. I said, “I don’t know, Ryan. If I think of something, I’ll be sure to reach out to you.”

Cog@Work: Can you tell me some examples of what that looks like when you did ask for help and what did Ryan to support?

Roger: There’s a story I want to share with you about him. I can remember having to do a lot of reporting, we’re a provincial entity. We had a lot of shared drives. You have to get to that shared drive to report whatever it is they want. Whatever it is they’re asking for. Usually, data [and I] worked a lot with Excel, and you’d have to manipulate the spreadsheet to extract whatever it is they’re looking for. I was a good manipulator that way, sucking information out. I can remember one day; I couldn’t remember how to get to the shared drive, and I had a lot of work to do. I thought to myself, “Well, I probably could figure this out in about 40-minutes, or I could pick up the phone and just ask Ryan, see if he picks up the phone”…He goes, “What’s up, Roger?” I said do you know that reporting …and he goes, “Yes, yes, you get that done?” I said, “Yes, but I can’t remember how to get to the shared drive.” There’s like nine steps that you need to do, and I couldn’t remember the steps.

At the end of the day, we had awesome technology and he could sign onto my computer. He would start showing me the steps, refreshing my memory. As he’s showing me the steps, I’m making notes, so I don’t have to ask him again. That saved me 40-minutes of work in just a 90-seconds phone call, time management. I would like to say I wasn’t a very needy employee in the big picture. I didn’t have to ask them a whole lot, but I was comfortable asking. There was the odd time where we did it for each other. It wasn’t a one-way street either, I remember some analysis that had to be done and we were short management in this other part of Southern Alberta, and I took on that one. It’s a reciprocal relationship that way.

Cog@Work: Were there any other accommodations that AHS provided?

Roger: They did offer me another accommodated role and it was a good role. It was doing project work throughout Southern Alberta, that’s always interesting work but I declined it. I said, “Thanks but no thanks,” for a number of reasons. One, it required a lot of travel, and I didn’t want to travel too much.

Cog@Work: Outside of Ryan, had you told any of your colleagues about your diagnosis?

Roger: I had a number of people under my management umbrella, and I can remember Ryan asking me, “Are you going to tell the staff?” Everything was up to me, how much I wanted to share. I respected that and I said, “Yes, I’m going to hold a staff meeting and just hit them between the eyes,” but this is what I found interesting…If you’ve watched any presentations I do, often, I mention that we learn about dementia and reverse chronological order. Often, the general public see people with dementia at the most challenging stages. There’s a reason for that. They’re taught to learn about dementia that way. They don’t see all the faces of dementia, so this leads to preconceived perceptions.

I’m used to having 15 phone messages, there’s a lineup at my door of people wanting to speak to me, there’s constant people trying to get my attention. After I told them, no one was at my door, and this made me nervous. I said, “Oh, this is odd, this isn’t right.” I could tell just by comments they made, and I could tell there was a lot of preconceived perceptions here. They felt awkward, therefore I felt awkward by that reaction. They didn’t know what to say.

When I first shared the diagnosis, I said, “Yes, it’s progressive and yes, I will be leaving the position one day but for now, I’m doing fine so it’s business as usual folks,” but it wasn’t business as usual and that’s what concerned me. I liked having my finger on the pulse of what’s going on. I got around that.

Cog@Work: How?

Roger: It was a learning curve for me. It’s just things you learn as you go. How I got around it, was I was just me. I decided I’m just going to be me. I can remember, I talk about the kids’ hockey game that they had coming up or that new car they bought. We always had a lot of laughs and jokes in our workspace.

I would also say, “Did you get that done? I needed the report by Friday, is it done?” Holding them to task. Or go to the people every day, “I need this, this and this. I need you to jump on that now,” that kind of thing. Very quickly, they’d seen Roger for Roger. They got past that hurdle. Before you know it, there was staff at my door with challenges they were having. Much like Ryan sorting things out for me, I’d sort things out for them, you know chain of command. There is a way to overcome it, and I think that’s worth a mention.

Cog@Work: Did You find that your staff’s behavior or anything changed as things progressed for you and you got closer to retirement?

Roger: 90% [of staff] were supportive, [they were] wonderful. I can remember examples where there was an employee, I said, “I need this information. I know it’s a bit to ask of you, how much time do you need?” They go, “I could have it to you by Friday.” Here’s the thing, I was worried I’d forget. I go to them, “So Friday, you’re pretty confident you can have that done for me?” …I said, “In all probability, I will forget, right? I need you to come on Friday. Remind me of my request to you and give me the results,” well, Friday like clockwork, tap, tap, tap, and the employee said, “You asked me to get this,” and I say, “Oh, “Yes, thank you”. I thanked them profusely. That kind of cooperation, any ask I would have of them, they would do it.

Cog@Work: That’s wonderful to hear. Thinking back, if you could wave a magical wand, what technologies would you have wished were in place at that time to better support you and Ryan through this process?

Roger: I remember Ryan making comments about reaching out and getting help or better understanding of dementia. Well, I know that Alzheimer’s Society gives in-services for workplace knowledge with dementia, I wish we had thought to do that with the staff, like I had overcome their issues. I had overcome all that. It was business as usual. They had faith in me. That wasn’t an issue, but it would’ve been less of an uphill battle to change their perceptions if we, maybe, brought someone in to train the staff too. That was, thinking back, I wish we did that. Not that I knew that was even available at the time.

As far as technology, I lean quite a bit on Outlook Calendar for memory prompts. Things like that. Of course, you have 50 billion meetings and all these things, and I’d use posted notes, of course, asking people, “Remind me tomorrow to address that,” things like that, even coworkers and everything. Thinking back on it, I wish I had Google Home, because I use it constantly. How do you think I remembered our meeting? I would have a Google Home sitting on my work desk…That would’ve helped me quite a bit on keeping me more on task towards what I needed to do, I think…but I’ll tell you this, I so appreciated Ryan. At the end of the day, I love that guy and I am so grateful to have my final working days with that man!

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In Conversation with Ryan Thomson: Supporting Employees who Develop Dementia while on the Job

Posted: January 11, 2022

Alberta Health Services is Canadas largest integrated health system, employing over 100,000 health care professionals. Ryan Thomson is the Director of Contracting Procurement and Supply Chain Management for Alberta Health Services, South Zone. In 2015, Ryan noticed a collection of performance issues with one of his longtime employees, Site Services Supervisor Roger Marple. Roger would soon receive a diagnosis of early onset dementia, at the age 56. In this conservation, we spoke with Ryan about his perspectives and experience with dementia in the workplace. Some of Ryan’s comments include personal information about Roger, a tireless advocate for people living with dementia, who has kindly given us permission to share this conversation with you.

Cog@Work
Thanks for connecting with our team and sharing your story with us, Ryan. Please tell us about your experience working with Roger.

Ryan Thomson

I was Roger’s direct supervisor. Roger was an amazing employee who had almost over two decades of experience within supply chain and I recognized that he was having some struggles, which was surprising because of his experience and just because who he was as a person. In highlighting some of these discrepancies or performance concerns, [he] was able to get in line with a diagnosis of early onset dementia. That’s something that Roger was willing to share with me as his direct supervisor, and we worked together to keep him in the workplace as long as possible, as long as his physicians would allow him to be in work, because there was a lot of value that he was still able to provide in that role as the supervisor.

Cog@Work
In your experience working closely with Roger in that supportive role, what tools or resources would have been useful to you as his supervisor, that you didn’t have on hand?

Ryan Thomson

Would have been useful for me personally? Better context and understanding of dementia. I had very limited exposure [to dementia] prior to working with Roger. I didn’t even know where to ask. I turned to Google, not realizing that there was actually a lot of resources available at provincial and national level, but I didn’t think to even tap into those until later on. That would have been one. Two, would have been, perhaps almost like a checklist of items of “I wonder if this is something that Roger struggling with”. Something that may have pointed me in the direction of being able to better support Roger early on prior to his diagnosis, to maybe look in that direction, or at least have an awareness that this might be something that’s affecting my employee. That probably would have been helpful. So, to me, just a better education and understanding of how dementia in the workforce may manifest by your staff.

Cog@Work

So since working with Roger, can you think of any other examples where AHS has been able to accommodate an employee with some form of progressive cognitive impairment?

Ryan Thomson

Yeah, I have another colleague. I believe their diagnosis is Parkinson’s disease. This individual was a Director. I think it’s probably been almost two years [since their diagnosis]. There’s been an accommodation for this individual because that role was physically too demanding, and so they actually moved them into a different role, where I think they’re quite happy and professionally satisfied with their career. I think it’s a nice fit for them probably long term, as that disease progresses, and as they look at that transition and next phase of their life.

Cog@Work
That’s excellent! In this case, do you know how AHS manages the process of checking back in to make sure their accommodations match what their current abilities and needs are, as they change? Is there a process for accommodations for progressive diseases?

Ryan Thomson

I can’t speak to that but would imagine that it’s an ongoing dialogue with their direct supervisor. And also, our abilities management team, including Lindsey Simpson who is the director. I think it would be a joint conversation with someone from Lindsey’s team, one of the ability advisors, and then the employee’s direct supervisor. So, I think it would be an ongoing conversation, and also, the clinical providers that are providing the care and direction from [the employees] end, would also be part of that conversation. It is a big team and it’s an amazing team.

Cog@Work
In your opinion, what was the impact of your experience with supporting Roger on AHS and their approach to disability management? Did anything change?

Ryan Thomson

I don’t know if I can take credit for that at all. I mean, AHS is such a huge employer, right? With over 100,000 staff. I think based on comments that both Roger and I received, in relation to that, and a story that was released internally within the organization as well as on social media platforms, the response was very positive. It gave other individuals hope that there were options available and that there was someone that actually, you know, cared enough to try to make this work. Recognizing what the employee still is able to competently do and that’s something that’s transferable for anyone there. Everyone has different skills or talents or experiences that, in organizations this large, can be leveraged effectively somewhere. And so, I think, it highlights that it’s not only the right thing to do, but it’s something that that we should do, especially as a as a health care organization. We should be able to care for our own staff as much as we care for our customers or clients.

Cog@Work
What kind of technologies would be useful for AHS as an organization and to you as a supervisor, to either predict, prepare or respond to the need to accommodate employees who have progressive cognitive impairment?

Ryan Thomson

So, I think one that I’ve talked about this before is almost having a checklist. Maybe that’s too simplistic, but I think having an understanding and some context of how this may be manifest in the workforce, so that could drive the conversation with your employee. Is there an early warning system that managers could be educated on or at least have exposure to in their training? I mean, we get training on all other aspects from performance management, sick time management, to infection prevention and control. Its health care, it’s large, there’s a lot going on for supervisors, but people are still people. I think being more exposed and having some context on dementia in the workplace, even if it’s a 20-minutes slide show … hopefully that would trigger in the future, if you run into a situation that you’re like, hey, you know, I wonder if…. [along with] who can you call to ask more questions? You need a starting point somewhere. Sadly, in Roger’s case, the starting point was performance issues.

Cog@Work
Currently, are there any technologies that you know of or that AHS uses to monitor employee performance? Do you think data like this would help with identifying early signs of issues so that cognitive impairment might be considered in light of performance issues?

Ryan Thomson

I mean, we have two systems that we report into. One is patient centric. It is a short reporting and learning system, and so that’s for any close calls or patient safety incidents that may have occurred. And it’s very detailed, that data is all consolidated provincially and analyzed to see if there’s any trends or concerns. For staff, there’s one that’s called My Safety Net. That’s also tracked both locally and provincially within the organization and could highlight any trends that may be happening within a team. So, we look at any workplace injuries and look at any trends that may be occurring. Maybe there’s a gap in training for patient handling or something like that. If there’s a hot spot within a specific site or department, but there’s nothing from this psychological point, that really is granular down to something like this that then, merges with performance. Performance is separate from a safety incident. So no, I’m not aware of any technologies that exist within the organization or that I’ve seen elsewhere that really helps facilitate that. Even for performance management, because of an employee’s absenteeism or poor-quality work in my environment and they’re attention to detail is not there, I actually don’t have a system for [tracking] that. It’s manual notes, I type it in, with a date and time, here’s the conversation, here was the go forward action. It’s progressive performance management that could lead to discipline, then the unions involved, but there’s no platform that helps me do that or correlate’s any of that.

Cog@Work
Do you think that in Roger’s case, if you had such a technology it might have helped?

Ryan Thomson

I don’t know if it would have helped. I’m just trying to think about how that would be. I think really the only reason any of this worked is because Roger is Roger, and we had an open and honest relationship. I think that really was one of the key success factors, who Roger is!

The Unique Challenges of Invisible Disabilities such as MCI|EOD for Workers and Employers

Posted: December 8, 2021

It is indisputable that creating an exemplary accommodation infrastructure within organizations helps to build diverse and disability-inclusive workplaces. One of the goals of the Cog@Work project is to understand employer’s perspectives on building inclusive and sustainable workplaces for employees identified with mild cognitive impairment or early onset dementia (MCI|EOD). Review of the peer-reviewed literature to date suggests that there are numerous barriers preventing employers from recognizing their employees needs with respect to invisible disabilities such as MCI|EOD. Invisible disabilities refer to a variety of physical and psychological conditions that often have no visible symptoms or are not immediately apparent due to a lack of visible identifiers (Santuzzi, 2014); as such neurocognitive disorders such as MCI|EOD are classified as invisible disabilities. One of the most difficult issues facing employers and workers is workers’ willingness to disclose an invisible disability to their organization and employer.

Many factors impact an employee’s willingness to disclose an invisible disability such as MCI|EOD, including a fear of being socially or professionally marginalized because of their condition, a lack of knowledge surrounding employers’ obligation to adjust their work environment so they can perform their job, or whether disclosing their disability will help or hurt their employment experience due to workplace culture (Egdell et al., 2021; Thomson et al., 2019). These challenges often result in employees hiding or not disclosing their difficulties to avoid bringing attention to them, preventing employers from realising their employee has a need for accommodation (Thomson et al., 2019). Furthermore, employees with invisible disabilities have indicated they are reluctant to share their diagnosis with their employers for fear of losing their position, rank, or their job (Dobson, 2019). Their reluctance may be well-founded. Disclosing the status of one’s invisible disability to a workplace may impact employees’ overall health, social relationships, and work performance, as well as the organization’s outcomes (Santuzzi et al., 2014). However, not disclosing a diagnosis or medical documentation of MCI|EOD for whatever reason or withholding relevant medical information that might explain a worker’s inability to perform the tasks of a job, will limit an employer’s ability to understand how the work environment must be adjusted to accommodate their problems or limitations. Non-disclosure may also result in termination for poor performance (Ritchie et al., 2018), where employer-initiated reasonable accommodations might allow an employee to continue working with dignity if desired.

Employers may find accommodating employees with invisible disabilities challenging; not only do they have to be aware that their employee has a disability, but they must also understand relevant laws related to disability discrimination, institutional knowledge of resources and accommodation processes, and also how to translate medical recommendations into appropriate workplace adjustments to appropriately support their employees (Egdell, 2021; Thomson, 2019). Employers do not have a duty to change working conditions in a fundamental way but do have a duty if they can do so without undue hardship, to arrange the workplace or duties so that an employee can do their work.

There is some evidence that employers understand the need to support employees with MCI|EOD, even without a diagnosis, however the extent of that support is often limited by the financial implications of accommodations and concerns regarding the employee and workplace health and safety risks, depending on the size of the organization and sector in which it operates (Egdell et al., 2021: Thomson et al., 2019). Some employers can find it difficult to initiate conversations with employees whose actions may be suggestive of MCI|EOD, however there is Canadian case law that suggests when an employer is aware of or might be expected to be aware of a performance issue that might be caused by a disability, they have a duty to ask the employee. Employers highlight a need for greater education and training to improve their ability to identify signs and symptoms of invisible disabilities, including MCI|EOD in the workplace. 

Some strategies have been outlined by Sabat et al. (2021) for ways that “Workplace Allies” can help alleviate these challenging situations for employees seeking accommodations through the willing disclosure of their invisible disabilities. They advocate for:

Supportive Behaviours -> providing comfort and psychological resources

Providing social support i.e., integrating individuals with disabilities into social networks
Receiving disclosures with empathy and understanding i.e., being positive, accepting and validating experiences and concerns

Advocacy Behaviors -> showing outward support beyond tolerance that actively tries to change norms

Educating peers i.e., helping to build a workspace collectively that is more aware and positive
Advocating for workplace accommodations that ensures all workers can perform their jobs adequately
Confronting instances of prejudice is often more effective when initiated by allies rather than targets

References

Dobson, S. (2019). Dealing with dementia at work. Canadian HR Reporter, 32(5), 8. Retrieved from https://www.hrreporter.com/focus-areas/wellness-mental-health/dealing-with-dementia-at-work/299194

Egdell, V., Cook, M., Stavert, J., Ritchie, L., Tolson, D., & Danson, M. (2021). Dementia in the workplace: are employers supporting employees living with dementia? Aging & Mental Health, 25(1), 134–141. https://doi.org/10.1080/13607863.2019.1667299

Sabat, I. E., Lindsey, A. P., Membere, A., Anderson, A., Ahmad, A., King, E., & Bolunmez, B. (2014). Invisible disabilities: Unique strategies for workplace allies. Industrial and Organizational Psychology: Perspectives on Science and Practice, 7(2), 259–265. https://doi.org/10.1111/iops.12145

Santuzzi, A.M., Waltz, P.R., Finkelstein, L.M. and Rupp, D.E. (2014), Invisible Disabilities: Unique Challenges for Employees and Organizations. Ind Organ Psychol, 7: 204-219. https://doi.org/10.1111/iops.1213

Thomson, L., Stanyon, M., Dening, T., Heron, R., & Griffiths, A. (2019). Managing employees with dementia: a systematic review. Occupational Medicine (Oxford, England), 69(2), 89–98. https://doi.org/10.1093/occmed/kqy161

Lessons from the desk of an AGE-WELL Research Trainee

Author: Kristina Kokorelias PhD

Posted: December 2, 2021

I am an interdisciplinary health services researcher, whose program of research spans the fields of gerontology and rehabilitation sciences. Our Cog@Work team includes our four principal investigators, along with a group of talented researchers from disciplines ranging from systems design and engineering, business management and technology, public health and neuroscience.  None of us are lawyers by trade, except for a member of our advisory group who is a lawyer focused law and policy related to aging.

One of the goals of the Cog@Work program of research is to conduct a critical review of the national and international literature to identify policies that provide insight into the responsibilities of employers of workers who are identified with mild cognitive impairment or early onset dementia (MCI/EOD) at work. While I have had extensive experience with knowledge synthesis, this was my first undertaking of political literature.

Here’s the truth: Trying to understand pollical literature is hard work. The policy environment in Canada is complex with related policies and laws differ by governance level, geography, sector and employment relationship. It requires grit, determination, and plenty of detective skills that you may have never anticipated you would actually need in the research world.

Below I outline some of my key lessons (so far!)

You Already Have Some of the Skills

Here is the good news about conducting a policy review: You have already been taught literature synthesis throughout your graduate training. You also have expertise in related tasks such as data management, data extraction and synthesizing research articles. I relied frequently on these skillsets.

Project Management

The responsibility of seeing projects from start to finish is something many of us trainees experience and is one of the very things that makes being a researcher so fulfilling, but this can be overwhelming. In the context of looking at jurisprudence literature, it is especially important to keep track of dates and timelines as things can change very quickly (and these changes become part of the “story”).

Time Management

In the similar vein to the above, conducting a thorough search of the legal literature means you don’t necessarily have the same timelines for completing tasks as you normally do in conducting more traditional scoping or systematic reviews. Much of the literature does not have titles or abstracts and can be fulsome reads that take time. Staying on top of your own commitments and workload is paramount to ensure timelines are able to be met- even if some things take longer than you thought. The better you can manage your time, the more efficient and effective you can be in ensuring you have enough time to thoroughly search and understand the literature.

Seek Legal Expertise

While I am sure this item inspired a lot of eye rolls, it is true. After trying my best to learn all the terms (with the help of Google and a few YouTube videos!), it was only after consulting our advisory board lawyer that I realized I had missed the mark. However, it was still helpful to have a grasp on the terminology so that I could understand what our colleague was advising on. Plus, even with the expertise of a lawyer on board, it is likely that you will still be responsible for the writing and synthesizing of information. The more familiarity you can get with the nuts and bolts of legalese, the better off you will be in contributing to discussions. However, there is a clear reason law school is its own professional program!

Cog@Work and Covid-19

Posted: October 15, 2021

A year and a half into the pandemic and counting. The research team has had to pivot many times. Our recruitment of industry partners slowed as they themselves were managing a relentless firehose of issues during the early stages of shutdowns and the ensuing pre- and post-vaccination stages. We have added a number of under-graduate and graduate students to the team, all exploring different aspects of our focus on employers’ perspectives on workers who are identified as having early onset dementia or mild cognitive decline.

Workers with early onset dementia tend to develop symptoms in their 30s, 40s and 50s. Their cases can be devilish to diagnose as healthcare providers generally don’t look for dementia-related diseases in workers so young, nor do employers. Workers are often terminated for “performance issues” before their symptoms can be fully diagnosed. This has dire consequences for workers’ financial health in the face of a progressive and debilitating medical condition. Conversely, stigma associated with systemic ageism may mean that all older workers are side-lined due to pervasive expectations of both employers and co-workers. Those with mild cognitive impairment may be equally undiagnosed, labelled as “unable to fulfil the requirements for their job” and similarly dispatched from the workplace

The OECD has predicted that in less than 30 years, 40% of the workforce in the developed world will be older than 50. In Canada, half of people over 50 live with at least one high-impact chronic condition, this rises to 70% at 61 years. Clearly, if our productivity as a country remains tied to our labour market productivity, we need more research to support employers’ ability to “get the job done” with a changing workforce.

Cog@Work researchers are exploring 21^st century upgrades to workspaces to ensure that innovative new technologies are available to employers to support the inclusion of workers who are identified with mild cognitive impairment or early onset dementia. Legislation to guide the actions of employers towards disabled workers is different across countries, and in many cases, within countries based on intersecting regional government legislation. However, deeply rooted ideologies in both the organizational culture and individual perspectives of supervisors often guide how the spirit of the legislation is applied in the day-to-day management of employees. These perspectives, and our understanding of the return on investment associated with optimizing the productivity of workers with progressive cognitive conditions must be challenged to ensure that Canada is ready to optimize the productivity of the entire workforce, and not just those who fit the normative view of being “fit for work”

Staying On the Job

Posted: October 1, 2021

A diagnosis of dementia can be extremely overwhelming, especially for those who are currently working. With stigmatization and a lack of knowledge regarding dementia being apparent in many workplaces, it is understandable that employees and employers are unsure of their options. However, as more inclusive systems are created within workplaces; it is apparent that there are many options for employees and employers to both obtain success. For more information on your options and how you can create an inclusive workplace visit: https://dementiaconnections.ca/staying-on-the-job/

Life with Dementia Podcast: Cog@Work

Posted: March 19, 2020

Dr. Josephine McMurray joins host Johnna Lowther and invited guest Roger Marple on Life with Dementia to talk about the Cog@Work project. Wondering what a supportive work environment might look like for workers with dementia? Want to know more about our Cog@Work project? Listen to this 32 min podcast to hear more!

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