Advice

Working with dementia: How the law helps and how to talk to your employer about your 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