Dementia is an umbrella term for a range of progressive conditions that affect the brain, including Alzheimer’s disease.
Each type of dementia stops a person’s neurones (brain cells) working properly in specific areas, affecting their ability to remember, think and speak. It can cause confusion, memory loss and difficulties with speech and understanding.
With an ageing workforce, and young onset dementia, also known as ‘working age dementia’ affecting people under the retirement age, it’s important to understand how dementia can impact your workforce. And as the population ages, many more professionals in work will have caring responsibilities, which need to be considered as part of an employee’s overall needs for support.
Vic Lyons, Head of Digital and Dementia at Work, at Dementia UK, talks to us all about how living with dementia (themselves and as carers), can impact someone at work:
Q: What's the main message of World Alzheimer's Month?
A: World Alzheimer's Month is an international campaign to raise awareness and highlight the issues faced by people with dementia and their families.
With dementia, we always talk about “families living with dementia” because if you get that diagnosis, the whole family around them will be impacted, not just the person with the diagnosis.
And during this month, it’s a unique time because we've got a new government for the first time in 14 years. We're calling on them to really help people living with dementia and do something to fix the care system, because it's disjointed now. It's difficult to access; it's inadequate for people with dementia.
What we're saying at Dementia UK is: “New government, we know within the terms of your office that the number of people living with dementia is expected to exceed one million. Arguably, it's over that already, it's just some people haven't got their diagnosis yet.
“It’s about making sure that people have got the support, because we know families are left feeling exhausted, overwhelmed, and alone – and the healthcare system is just not fit for purpose at the moment.”
We're calling on the government to put some meaningful steps in place to try and fix the system. Transform it; do something brave.
Q: How many people with dementia are in work, or looking for work, in the UK at present?
A: That's a hard number to quantify. We know that, as the retirement age increases, people are in work much later and longer than they may have been previously. We know there's over 71,000 people, for example, who have young onset dementia, which is dementia that first presents itself under the age of 65. The youngest person I've worked with who has this is in their 30s. For those 71,000 (plus) people, the likelihood is they're going to be in work; they’re working age.
Whenever I talk about the numbers of people in work who are impacted by dementia – we know that there’s around 900,000 people in the UK with dementia. Not necessarily with a diagnosis, but with dementia. The number with an actual diagnosis is less because you don't get the diagnosis the minute the dementia starts.
When I talk about people who are working and living with dementia, I also talk about the family carers, which includes me. I'm a carer for my mother-in-law, who's got dementia. So, I'm living with dementia. Admittedly not myself, but during my working day, I'm having to think about her health needs, what's going on for her, what support she's got going on, managing any calls and things whilst I'm working. I’m part of that number.
This is why it's so important to talk to companies and to develop the resources that we're developing at Dementia UK. There's 900,000 families and it’s predominantly working women who are the main carers in the structure we have in the UK, sometimes males as well, but it's still often the female who has more of a caregiving role.
Q: How does dementia impact professionals at work?
A: The truthful answer to this is that it’s going to be really varied. Dementia isn't just forgetfulness. It's not just somebody getting a bit forgetful and getting a bit muddled. How somebody presents and what happens can be very varied. It could be their personality changing, they may be struggling to do the organisation and the structuring of their work. They might be missing appointments or missing deadlines because they can't process when they're supposed to do these things.
It might mean somebody getting lost and confused on their way to work and their journey to work taking longer than previously. Then, by the time they're arriving to work, they're already feeling flustered.
Those working from home might be late to meetings because they’re not organised or are struggling with the tech to get them into meetings.
If your employee is a carer, they might be stressed, tearful, overwhelmed at work, potentially struggling to do the body of work that's required of them.
Q: How likely is it that someone with dementia can continue working?
A: I know quite a lot of people who are still in employment while living with a diagnosis of dementia.
There's no reason why somebody with dementia shouldn't be able to continue working – it's about putting the right support in place. There’s no “obviously they should stop working”.
However, it can depend on the role. In some jobs, it may no longer be safe for them to work once they've got that diagnosis.
While dementia doesn't necessarily mean you have to stop driving, if they were a bus driver, for example, there’s a risk for other people, if this person were to have an accident.
It's about working with people in a flexible way, to think about aligning their strengths and what they can do. And maybe alternating what they can do.
I worked with a lady whose organisation were able to move her to several different departments and roles and provide her with a buddy. That’s how she was able to stay in work. They just had to work in a creative and flexible way to support her.
Work is part of our identity. It's an important thing for so many of us that it is crucial that people can work as the dementia progresses.
Employers just need to regularly check in with employees. It’s about having those contact points to ask if anything has changed, whether that person is still able to do their job safely, and whether they are still happy in their role or if they’re struggling with stress or anxiety.
Q: How can employers create an inclusive workplace for people with dementia?
A: Flexible work arrangements can work well for people with dementia and carers. Carers may need flexible working to make sure someone else's care needs are met, or to take them to appointments.
Technological accessibility tools can be great. There’s scheduling and memory aids and reminders, and AI can transcribe meetings for people to record and read after meetings. That takes the burden and stress from professionals who would otherwise need to remember all of the actions and outcomes themselves.
Another point I would make about reasonable employment is education the workforce. Leaders should talk to people who work with that person so that they know how to foster a supportive and understanding environment for them: potential issues and challenges that this person's going to have, and how we can support and help them.
The buddy I mentioned earlier can really help because it's somebody who they can talk to and check in with, who understands what they're going through and can help them.
Another organisation I worked with, they wanted to keep this person who was working for them, and they provided them with a buddy who was there to kind of work alongside them and make sure things were not missed. This worked well and gave them the support they needed.
Q: How can businesses make the hiring process more inclusive for those with dementia?
A: I'd include carers in this one as well, because we know lots of carers give up work because of their caring responsibilities. Conversely, we also know that carers sometimes have to take on work because they need money to provide care for somebody, for example, those who are retired.
The way to do this – and I imagine this would work for a diverse range of people as well – would be to simplify job descriptions. Use clear, concise and unambiguous language. Highlight things like flexible working hours and locations to accommodate needs.
Sometimes job descriptions can be confusing, and the requirements are a bit ambiguous. Many have that catch-all line: “and any other responsibilities that could come up”.
Think about the methods of applying and the technology you’re using. Only having the option to apply online might become a barrier. Could you do paper forms or verbal applications?
Then I would think about the interview process and how to structure the interview.
Many people are talking about the advantages and, of course, the concerns, of providing questions in advance – but hiring managers should think about what information someone might need ahead of time to present themselves well. Candidates would have sufficient time to think about their answers and how they would structure their responses.
Employers could be more flexible with the timing of interviews and whether it’s in person or online so that they’re more comfortable in their environment.
I've worked with many carers who've had to search jobs, and they end up not even getting to the interview because the interview is in a different county, and it can only be at this time and they're not able to manage a care package to go in and support the person at that window.
They could also allow carers to be present at the interview of someone with dementia.
And then I think competency and skills-based interviews should be standardised over long questions and confusing questions that are designed to stretch people. Scenario questions can be quite hard for people with dementia, rather than focusing on the skills and experiences they’ve got.
It's not impossible, but it's probably more unusual to be interviewing someone with dementia, because it's more likely to be a staff member who is already working for you, who's developing dementia.
Consider how you onboard people, communicate with them and structure their work so that they can do the best job for you.
Q: What should all employers be doing to create an inclusive workplace for people with dementia and carers?
A: It’s about building that culture of awareness and understanding.
Training staff, talking to them so they know that you’re an organisation that supports diversity of skills and age. Send the message across the company that you’re open to having these conversations, and not just expecting people to be robots and complete their tasks – it's about working with your people to find out what they need.
The other important thing is providing those reasonable adjustments. Think about the job duties and go through the gambit of reasonable adjustments that you may be expected to provide for an employee, because it’s against the law to dismiss somebody based on them having this diagnosis. You need to make sure that you absolutely adhere to those.
That of course falls into your practices and your procedures about how you’re going to support people – both people with dementia but also their carers. Clearly outline whether people can request carers leave, and in an emergency or not.
Someone who is the main carer for a family member with a long-term disease process, such as dementia or Alzheimer's, is going to need months and months of support rather than a one-off intervention. Employers are going to need to consider that in a holistic and long-term plan rather than just a short-term plan.
That also feeds into the mental health and wellbeing support that you've got to have, such as an employee assistance programme. What mental health resources have you got in place to support your staff? What do they do if they’re stressed or anxious? Who do they talk to?
More businesses should have regular activities in place for people to relax and touch down. These days, depending on how your business is structured, if you're an online business, there's that tendency for staff working from home to turn up at nine and work solidly through to five and lunch breaks are at their desks. There aren’t as many fun moments, because all your meetings become more transactional. You need to ensure you build in that culture where people's wellbeing is considered.
Q: What's one thing you think all employers should know about employees with Alzheimer's or other types of dementia?
A: This is easy to answer. Somebody with any type of dementia can still contribute meaningfully to the workplace, particularly in the early stages of this disease, or this process. Organisations need appropriate support and accommodations in place to help somebody to still use their skills and experiences effectively for as long as possible.
Q: How does the law protect people with dementia in the workplace?
A: In the UK, we’ve got the Equality Act (2010), and this protects people from discrimination in the workplace. It is clear employers must provide reasonable adjustments to accommodate employees with all disabilities, including dementia. Everything I’ve talked about earlier, you need to offer flexible working, changes in duties, and AI and assistive technologies, where possible.
Overall, you just can't treat somebody unfavourably due to their dementia diagnosis.
You've got to ensure that they've got the same rights and opportunities as other employees. Employers are legally obliged to provide that support and if somebody does disclose this new diagnosis, or a concern that this diagnosis may be coming. Employers must provide the right level of support and duty of care to those staff as they would any other.
Employees don’t need to have a diagnosis to receive support. A diagnosis can take a good period of time. It’s not like breaking your leg. You will often be living with the changes of dementia for, sometimes, years before you can get a diagnosis.
Employees should talk to their employers as early as possible, because you don’t want your employer to think you’re being lazy or disinterested because then employers start looking at capabilities and performance management. But what's actually happening is some cognitive changes, as a result of the disease process of dementia.
Having those open and honest conversations as early as possible will really help to mitigate against you potentially losing employment because of what is essentially a disease process.
About Dementia UK
Dementia UK works with organisations to provide them with master classes and support to train and educate their staff around dementia and help reduce the stigma.
Through masterpieces, bespoke sessions and support, consultancy, the Admiral Nurse team of specialist nurses help grow dementia-inclusive workforces. The team works with the organisation and provides specialist bespoke advice and support for people living with dementia in all roles, from retail workers and university lecturers to managing directors – whether they are carers or diagnosed themselves.
Work is a large part of our identities, which many people feel passionate about. Work can give you a sense of pride and purpose. Dementia UK aims to ensure people can stay in work as long as they want to and are able to.
If you need advice or support on living with dementia contact Dementia UK’s Admiral Nurse Dementia Helpline on 0800 888 6678 or email helpline@dementiauk.org.
If you’re searching for a talented professional to join your organisation, contact your nearest Reed office.
