A man with dementia at work

Work and dementia: How to tell your employer about your diagnosis

Many people living with dementia may want to continue working. Read about your rights in the workplace and how to talk to your employer about the condition.

Getting a diagnosis of dementia while still of working age can be difficult to accept. You may still want or need to continue working, whether it’s for financial reasons or because you enjoy it.

In most cases, it will not be necessary to give up your job immediately. Employers are required to make adjustments where possible to support you in your role. 

If you want to stay in work, it is your choice of whether to continue working and how long for. You may find that staying active at work is better for your physical and emotional wellbeing. Other people may want to adapt their role or give up work-related stresses.

How the law protects you

The first thing to know is that the law is on your side. People living with dementia are protected from discrimination under The Equality Act 2010 in England, Scotland and Wales. The Disability Discrimination Act works in a similar way in Northern Ireland. 

Both Acts require employers to make ‘reasonable adjustments’ in the workplace to help you do your job. This could mean introducing flexible working hours, for example, or moving your working area somewhere quieter.

Employers should not dismiss a person on disciplinary grounds if the effect on their work is caused by dementia. However, they can dismiss someone on capability grounds if a person is unable to do the work and reasonable adjustments have been made. 

The Equality and Human Rights Commission says:

‘If you are being dismissed on the grounds of capability, this should only be done following careful discussion, expert advice and research of all possible reasonable adjustments. It may be more appropriate to offer to move a disabled person to a different role than to dismiss on the grounds of capability’

If you want to apply for a new job after receiving a diagnosis, the Equality Act also protects you from being discriminated against. You can speak to a disability employment adviser for further advice.

Talking to your employer 

After a dementia diagnosis, it’s best to talk to your employer and tell them if you’d like to continue working. 

In most cases this is not a legal requirement, but it’s a good idea to check your contract. Notable exceptions when you must inform your employer include if you are in the armed forces, or work on a plane or ship. If your job involves driving, you will also have to tell both your employer and the DVLA that you have dementia.

Some people can feel anxious about telling their employer, but there can be many benefits. By informing your workplace, you will be able to access support that could help make working more manageable. If you don’t tell your employer about your diagnosis, they may not have any legal duty to help you. 

Wendy Mitchell was working for the NHS when she was diagnosed with young-onset Alzheimer's disease, aged 58. She remembers feeling nervous before telling her colleagues, but later found them a huge source of support;

'There’s no point in keeping it a secret otherwise colleagues will only make up their own stories of why you’re struggling and may be less supportive.

'Once people understand WHY something is happening, you’ll be surprised how supportive and helpful those around you can be, just like my wonderful team.'

Whether or not you tell your other colleagues that you have dementia is always your choice. There’s no rush to make a decision, so take your time and consider asking your employer for advice. 

Changes to your role

If you decide to continue working, think about whether making changes to your role could help you do your job better.

Some adjustments that people living with dementia make to their roles include;

  • Changing your work schedule to give you time to rest if you are tired
  • Simplifying your schedule and opting out of less important meetings
  • Requesting to be moved to a quieter area with less distraction
  • Using technology or calendars to remind you of meetings and deadlines 
  • Moving to a less senior or demanding role.

As dementia is a progressive condition, there will likely come a time when continuing to work is no longer possible. There are many reasons why people have to give up work – it is not a failing to have a condition that makes it impossible to continue working.

At this stage, it’s important to be aware of any benefits you may be entitled to. You may also want to consider other ways to keep active and involved

Read our guide to employment

For more on this subject, download or order a print copy of our full guide to employment for people living with dementia.

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Epilepsy at birth and because I had so many head injuries as I’ve gotten older now I have the beginnings of dementia. I was working for the schools for 17 1/2 years as a custodian it was a kind of job I was pretty much on my own nobody would bother me and then I became head custodian. The problem with me was we had a fire drill tornado drills I would forget where I was supposed to go and what I was supposed to do I talk to my neurologist and he pretty much told me as honest As he could because I was working with a lot of kids if I was to do something wrong to get them hurt I would feel bad so I took a disability that was the hardest thing for me because I always grew up in a blue-collar family. Knowing as I get older it’ll get worse but until then I have learned so many things to help me. To stay active read a book, ride a bike, spend time with your wife and kids and family. But one thing I’m learning most of all don’t feel sorry for yourself stay away from TV Life is short I know I’m gonna die someday the coolest thing is is that when I get to heaven I won’t Have to worry about dementia no more.

This is helpful

I work in HR, we started using a software called Talk to Spot https://talktospot.com/ ; it is an AI reporting tool to help employees speak up without concern of discrimination or judgment. I think in the cases of dementia that can be a hard talk. Perhaps this would be helpful in that situation as well.

This is helpful
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