A man with dementia at work

Working with dementia: How the law helps and how to talk to 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 your dementia diagnosis.

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.

Can I still work with dementia?

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. 

You may find that staying active at work is better for your physical and emotional well-being. Other people may want to adapt their role, or give up work-related stresses.

How the law protects people with dementia at work

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  and Wales.

The Disability Discrimination Act 1995 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, or even offering a different role.

Can I be fired for having dementia? 

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 law  also protects you from being discriminated against.

You can speak to a disability employment adviser for further advice.

Talking to your employer about your dementia diagnosis

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

In many cases, this is not a legal requirement, but it’s a good idea to check your contract and it will depend on the type of work you do.

For example, you’ll need to tell your employer about your diagnosis if your job has an impact on the health and safety of other people. This includes work that involves driving or operating machinery.

If your job involves driving, you will also have to tell the DVLA (or DVA in Northern Ireland) that you have dementia. 

Benefits of telling your employer about your diagnosis

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 work more manageable.

If you don’t tell your employer about your diagnosis, they may not have any legal duty to help you. 

You might find it helpful to take someone with you such as a trusted friend or colleague when you have the discussion with your employer.

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 might 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 to help you work with dementia

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 failure 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

 

This blog was first published in March 2019 and most recently updated in September 2023

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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6 comments

Two years ago I was diagnosed with Vascular Dementia. I work for a Law Firm and I told my boss about it. In no way has she ever try to help me. I noticed I’m getting worse with my memory. My co-workers know about me. They are getting
Frustrated and get upset with me. I’m a records clerk and I can do my job but as my boss said that I’m not fast enough. Now she wants me to train two hours a day to be a receptionist. Now I have to learn new things and I’m having problems with training. I’m so used to do things at my work over and over again and I don’t have any problems with it. I feel like my boss wants me out of there and she is finding so many ways for me to quit. I don’t want to but she is making it hard. I like being a clerk and that’s is what I signed up for. Now she is changing role on me. I’m at loss! My co-workers talks about me. I only wish they can see what I’m going through. I’m starting to feel a laughing stock while being there. My boss gets so mad at me if I can’t remember things. I have a feeling she is going to fire me.

Hello Liz,

Thank you for getting in touch. We are so sorry to hear about the troubling situation you are in. It sounds like you're in a very difficult working environment, which must be causing you a huge amount of stress and worry.

We'd strongly recommend calling our Dementia Connect support line on 0333 150 3456 for dementia information and emotional support. They can listen to your situation and give you advice specific to your working life and needs. Our advisers are here for you seven days a week: https://www.alzheimers.org.uk/dementia-connect-support-line

You might also benefit from talking with other people affected by dementia within our online community. Talking Point is free to use, and open day or night: https://forum.alzheimers.org.uk/ People with dementia, carers and others affected by the condition use Talking Point to share their own experiences and talk about situations they are going through.

We hope this is helpful for now.

Alzheimer's Society blog team

LIz Ramirez, I am so sorry your going through this. Im a bit younger and havent had a dianosis yet but I am almost certain that I have either early onsight dementia or possibly LBD. I have had a huge decline in my short and long term memory. I wok at a Preschool as an assistant childcare worker. Its so upsetting because I dont want any of my kids to fall victim because I was in denial and not getting this addressed. Your story hit me hard when you started talking about how your coworkers were almost laughing at you...yeah, mine are all noticing and I feel like a deer caught in the headlight frozen while I can feel everyones eyes, the side eyes, the whispering. Im sorry I didnt mean to dump all this here but I literally and scared shitless and everyday I feel like I should leave. My son went to that school, so did my grandson. Its humiliation and embarrassment to another level. Im 44 btw. Thanks again for letting me know im not alone when these episodes start rearing their ugly heads while at work and EVERYONE notices. Im scared shi*less they will think im on drugs or something...good luck and again, thank you Liz! Your, Angie.

Hi Angie,

We're sorry to hear this - it sounds like you are in a difficult situation. Please know that we are here for you.

We'd recommend calling our support line on 0333 150 3456 to speak with one of our trained dementia advisers. They will listen to you and provide specific information, advice and support to help with your situation. You can find more details about the support line (including opening hours and other methods of contact) here: https://www.alzheimers.org.uk/dementia-connect-support-line

If you haven't already, we also suggest that you make an appointment with your GP to talk about your symptoms. More information about preparing to speak with your GP can be found here: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/dementia-diagnosis/talking-gp

We hope this helps for now, Angie. Please do call our support line.

Alzheimer's Society blog team

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.

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.