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Working, Dementia and You

I’ve got dementia – can I still work?

If you're still working you might have some questions about your job. Here we answer some of the most common queries

Discovering that you have dementia while you’re still working can raise lots of questions about whether you’ll be able to still do your job. But a diagnosis might not automatically mean that you have to stop working.

Dementia affects everyone differently and many people feel that working gives them a sense of purpose and routine. However, a lot depends on the type of work you do and whether there are any legal reasons why your diagnosis means you should stop.

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To work or not to work?

You might have found that some of your first symptoms arose from problems at work, for example, being forgetful about important dates, meetings or deadlines or struggling to concentrate/stay focused on a task.

For this reason some people feel relieved when they receive their diagnosis and can understand what’s been causing their work problems. It means they can make an informed decision about work and whether they wish to continue. Some feel they’d prefer to stop working and choose to leave.

But a diagnosis doesn’t always mean you have to make an immediate decision about your job. If your symptoms are such that you can continue to carry out your role with a little help or adjustments, or you’ve been prescribed medication that helps with symptoms, you might be able to carrying on working for a while. In fact, you will have some legal protection to do so. However, much depends on your work and your role.

It may not be possible – or legal – for you to continue to work with a dementia diagnosis in certain roles and industries, especially if your job means you’re involved with:

  • Health and safety of other people

  • Driving

  • Operating machinery

Do I have to tell my boss?

You might work in a job where you don’t have to tell your employer that you have dementia – not everyone has to. However, it might be written into your contract that this is a requirement. It might also be a legal obligation if your job falls into any of the categories where a diagnosis of dementia could affect others, for example if your role involves the health and safety of other people, operating machinery or driving. It might also be a necessity for insurance purposes.

If you drive for a living you have to let the Driver and Vehicle Licensing Agency (DVLA) know about your diagnosis, but your employer will need to speak to their insurance company, too, so it’s important that you inform them as soon as possible.

For these reasons, it might be a good idea to speak to your employer about your dementia diagnosis. Your manager may have noticed changes in your behaviour or abilities but made assumptions about the cause. If your employer doesn’t know that you’re living with dementia, they are under no legal obligation to help you, so letting them know is a good thing.

The Alzheimer’s Society has a good leaflet with more information that you can download here 

I’ve got dementia and I’m still working – do I tell my boss?

Telling your employer you have dementia is a positive step: they might be legally obliged to help you to continue to work, if that’s what you want.

If you’ve recently found out you are living with dementia and are employed, it’s natural that you might feel nervous about sharing the news of your diagnosis with your employer. But by telling management about your dementia diagnosis you’re giving bosses the opportunity to make adjustments that might help you to keep working for longer. And if they refuse to do this, they could be breaking the law.

The benefits of telling your employer

Your employer may already suspect that things have changed for you. Many dementia symptoms first become evident in the work place. It’s common for people with dementia to slow down, seem a bit vague about details or be forgetful about meetings or deadlines, for example. Helping your managers to understand the cause of any issues you’ve been having at work is a positive thing to do.

Some people feel their dementia diagnosis is a good reason to leave work. Others want to continue working. But before you make any decisions about your job find out more about your financial situation so you can make an informed decision about whether you want to/are able to keep working. This might mean getting pensions advice, benefits information and talking to an independent financial adviser. You can read more about that here <Link to Financial>

What are my rights at work?

According to the independent body, ACAS, it’s likely that your employer will have a legal duty under the Equality Act 2010 to make ‘reasonable adjustments’ for you to continue to work.

You can find out more about this by calling the ACAS helpline on 0300 123 1100.

How do I tell my boss I have dementia?

  • Read your employment contract carefully so that you understand the terms of your employment – it might include information on disability or early retirement.

  • Seek advice on anything you don’t understand about your contract, employment terms and your position regarding your diagnosis (see ‘Who can help me?’)

  • Request a meeting with your employer and ask a trusted colleague, union representative or loved one to attend with you.

  • Take a list of the points you want to get across

It’s important not to be rushed into making any decisions on the spot. Take time to consider all your options and understand your financial and legal position before deciding what you’d like to do next.

How can work help me?

Once your employer has been informed about your diagnosis, it’s likely that they’re bound by law (see ‘What are my rights at work?’) to make changes to your working conditions to help you to carry on working.

This might mean:

  • Allowing you to work from home

  • Reducing the hours or days you work

  • Moving your work space to a quieter area

  • Being given one job at a time

  • Adapting your role to reduce the complexity of tasks

  • Changing your role – i.e. if you drive for a living you could be moved to a non-driving role

The Alzheimer’s Society has tips on how to create a dementia-friendly work place that might give you more ideas on the type of changes employers can make. You can download it here

What if my boss sacks me?

If you feel forced to resign or pushed out of your job because of your dementia diagnosis, you could have grounds for unfair dismissal. Similarly, if your employer makes life very difficult for you at work so you feel forced to leave this might be constructive dismissal.

If you think you were treated unfairly you might have grounds to challenge your employer, but it’s important to do this as soon as possible. See ‘Who can help me?’ for a list of useful organisations.

Who can help me?

If you find your employer is not very helpful after you’ve told them about your dementia diagnosis you can seek further advice. If you’re in a union, your union rep will be a good first port of call for help. You might have legal cover as part of a home insurance policy which means you can speak to a legal adviser for free.

Here’s a list of other organisations that can help you:

  • Citizens Advice - 03444 111 444

  • Access to Work - https://www.gov.uk/access-to-work

  • Disability Law Service - 020 7791 9800

  • Advisory, Conciliation and Arbitration Service (ACAS) - 0300 123 1100


Read the Alzheimer’s Society leaflet on employment here https://www.alzheimers.org.uk/sites/default/files/2018-10/Employment.pdf

Read more about financial planning and the benefits you might be entitled to