Dementia doesn’t only affect older people. Over 42,000 under 65s live with the condition in the UK, many of whom are in employment. And with the age of retirement only set to rise, dementia in the workplace is an issue which will likely grow over the next few decades.
It’s not a good idea to make generalisations about people with the illness and their suitability for employment. Working with dementia can present extra challenges, but the diagnosis doesn’t necessarily mean you have to give up your job.
It may actually be advantageous to stay in work following the diagnosis, provided you’re happy to. You likely still have plenty of skills and experience to offer an organisation. And employment can foster a sense of purpose and keep our emotional wellbeing in check.
Additionally, money worries don’t disappear when you learn you have dementia. You may still have a mortgage to pay or a family to financially support.
Should you tell your boss you have dementia?
Not everyone is legally required to tell their employer that they have dementia (check your contract), but it’s a good idea to have that conversation with them as soon as you can. In some professions, it’s vital you tell them – for instance, if you drive, or operate machinery as part of your role.
Starting that conversation with your boss is understandably daunting, but you’ll likely feel a huge sense of relief when it’s done.
It’s best to plan what you’re going to say beforehand. Think about whether your illness has made things more difficult at work – many people notice their first symptoms when they’re at their job – and the adjustments that could make it easier. You can take a family member, colleague or union representative to the meeting for support.
Remember, the law is on your side here. Dementia is legally recognised as a disability in the UK. So under the Equality Act 2010, your boss must make ‘reasonable adjustments’ to help you do your job. For instance, your employer could offer your more flexible working hours, or find a quieter place for you to work.
“There are excellent examples of jobs being redesigned around the capabilities of people with dementia and the adoption of simple adjustments such as allocating ‘buddies’, increasing signage and labelling in workplaces to help people find places and resources, and adapting work hours to accommodate fluctuations in symptoms or to help manage the impact of medication,” wrote Stephen Bevan, director of the Centre for Workforce Effectiveness at The Work Foundation, in HR Magazine.
Requests for reasonable adjustments might include:
Changing your work schedule to hours that are more suitable for you. For instance, making sure you’re working when you feel at your most productive but also aiming for a schedule that gives you enough time to rest.
Having regular catch-up meetings to give you a chance to voice any difficulties that you may be having.
Moving to a quieter area with fewer distractions.
Moving to a slightly different role within the company, that is less demanding or stressful.
Asking for technology to remind you of meetings and deadlines.
Dementia stigma and discrimination
But unfortunately, not every employer makes the effort to ensure their workplace is dementia-friendly. Chris was diagnosed with vascular dementia in 2016 when he was just 60. He did a phased return to work after coming to terms with the news. But when he arrived back at his desk, he was told his employer was not ready for him to come back.
“I went back to work anyway and found my desk had been moved to the corner. I felt wholly unsupported,” says Chris, who submitted evidence to the All-Party Parliamentary Group inquiry on dementia and disability. “I was put on a disciplinary process for people who underperform at work and eventually I retired on ill health. Within three months of my diagnosis, I lost my job and got depression.”
How bosses can make workplaces dementia-friendly
The APPG report found 98% of people living with dementia feel they are treated differently to people with other disabilities. So how can we encourage more bosses to be dementia-friendly?
A TV programme which aired in June 2019 aimed to tackle the stigma surrounding dementia and the workplace. Channel 4’s The Restaurant that Makes Mistakes brought together 14 people with dementia to run an eatery in Bristol, under the expertise of Michelin-starred chef Josh Eggleton. The results were heartwarming, inspiring and proved how much people with dementia can still contribute to society.
“I didn’t know what was going to happen going into this. But after day one, I was so happy with the effort they’d made, the standard that had been produced and the joy that came out of everybody working together,” Eggleton told This Morning.
Finding out someone they manage has a life-changing illness can be daunting for an employer too. But with a little bit of research, commitment to developing a culture of empathy and trust, and looking into dementia-friendly business initiatives, companies can be a force for social good and retain hardworking, passionate staff.
As Susan Raftery, ACAS conciliator wrote on the organisation’s blog: “As the number of people living with dementia increases, the benefits to employers of being dementia-friendly are clear: you will retain staff with skills that they can pass on to their colleagues, the culture is likely to attract higher-quality job applicants and equally importantly it shows you care about your employees.”
Providing employers are open-minded and willing to make reasonable adjustments, dementia should not be a barrier for those who still feel able to work.