Dementia Support Line
Getting support from your employer after a dementia diagnosis
Learn about talking to your employer following a dementia diagnosis, making decisions about your work with them and making changes to your role.
- Working and dementia
- You are here: Getting support from your employer after a dementia diagnosis
- How the law protects you after a dementia diagnosis
- Deciding to stop work following a dementia diagnosis
Talking to your employer about your dementia diagnosis
You may need to tell your employer that you have dementia. If you work for a large employer, this could mean either talking to your line manager or contacting the human resources (HR) or people team.
Not everyone has to tell their employer about their diagnosis, but legally some people have to. This will depend on the type of work you do and the terms of your contract.
For example, you’ll need to tell your employer about your dementia 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 this is the case, it might also affect any insurance that covers you.
It is normal to feel anxious about telling your employer that you have dementia. But this conversation can be helpful - for both of you. Your employer may have already noticed your struggles so telling them may help them to understand.
You may find it helpful to have a trusted colleague or family member there for support when you talk to your employer.
If you don’t tell your employer about your diagnosis, they may not have any legal duty to help you. This means that telling them can be a positive thing and may lead to changes being made to help you in your role.
Making decisions with your employer after a dementia diagnosis
Once you have discussed your diagnosis with your employer, give yourself time to make decisions. You don’t have to decide everything when you first speak to your employer. You can tell them that you need time to think about things and to get advice if necessary.
You need to make decisions that are right for you, and these may change over time. Any decision you make should be an informed one. This means you should make it based on information about your legal and financial options, such as your pension and benefits entitlement.
Your employment contract
Read your employment contract and look at any workplace policies that might apply to you. For example, there might be policies dealing with equality or disability issues, or early retirement.
If you are not sure what policies there are or where to find them, ask your employer, or the HR team if there is one. Your HR team might be called the people team.
Your legal and financial options
You can find out about your legal and financial options in a number of ways. For example, if you are a member of a union or staff association, they should be able to give you advice and support.
There are also organisations, such as Acas and MoneyHelper, that can give you advice about your rights and financial options.
Sick pay
Your employer should pay you statutory sick pay if you are unable to work. The amount is set by the government and it can be paid for up to 28 weeks. Check if you're eligible for Statutory Sick Pay.
Your employer may have a more generous sick pay scheme so you should also check your contract or ask your employer.
You might already be on sick leave when you get your diagnosis. This may make it more difficult for you to think about things and to talk to your employer. If this is the case, you might want to get legal advice about your rights and your financial options.
Making changes to your role after a dementia diagnosis
Think about what you can and can’t do in your role, then talk openly with your employer. If you want to keep working, there might be changes you can make to help you work better, such as:
- changing your work schedule to give you time to rest if you’re tired
- changing your working hours
- working from home some, or all, of the time
- arranging meetings in familiar locations and at times when you’re likely to feel and perform better
- simplifying your routine
- doing one task at a time
- working in a quieter area where there are fewer distractions
- using technology and equipment, such as a computerised diary to remind you about meetings and deadlines
- having a ‘buddy’ to support you
- moving to a different role – for example, moving to a non-driving role if you are not able to continue driving
Flexible working
Flexible working can include things like working from home, working part-time or job sharing. All employees have the right to request flexible working, whether or not they have a disability.
In Northern Ireland, you have to have worked for the same employer for more than six months to have this right. In England and Wales, you have it from day one.
Employers do not have to approve requests for flexible working but they have to show good business reasons for refusing them. You can request flexible working like anyone else.
You may have more protection under the Equality Act 2010 in England and Wales or the Disability Discrimination Act 1995 in Northern Ireland. This is because under those Acts, the employer has a duty to make reasonable adjustments for you. This might include giving you flexible working arrangements.
It is harder for an employer to reject a flexible working application if it is made as a request for a reasonable adjustment.
When making decisions, it's good to know what all your options are. You can get advice and support in a number of ways. Some of these, such as Acas, are free.
If you are in a union, that may give you access to free legal advice. It is also worth checking whether you have any insurance policies that include ‘legal expenses cover’.
This is sometimes added to household, car, credit card or mobile phone insurance policies.
Many people don’t realise they have legal expenses cover until they check their policy. If you do have it, you might be able to get your insurance company to pay for legal help.
Contact your insurance company (or companies) to find out if you have legal expenses cover and what the conditions of your policy are.
If you are self-employed and have received a dementia diagnosis
If you work for yourself, the legal protections which apply to employees won’t apply to you. However, you may have more control over when and how you work.
If you have built up your own business, you may be worried about what will happen to it and anyone who works for you. This is understandable.
As your dementia progresses, it may help to allow more time to do things or to make some changes to your working environment. You could consider if there is any technology that could help you, such as memory aids. You might find that you work better at different times of day.
As time goes on, you will need to think about taking on less work, or perhaps handing over to other people.
You might want to get some legal and financial advice about how to do that. You should also get information about your financial options for the future and any benefits you might be entitled to.
It is a good idea to start planning early so that you can make decisions about the future while you are still able.
If you have been diagnosed with dementia and you drive, you have to tell the Driver and Vehicle Licensing Agency (DVLA) in England and Wales. In Northern Ireland, this is the Driver & Vehicle Agency (DVA).
You must also tell your car insurance company about your diagnosis. The DVLA/DVA will then advise you on whether or not you have to stop driving.
If you drive as part of your job, this will have an impact on whether you can continue in that role. Your employer’s vehicle insurance company may need to know that you have dementia. You will need to discuss the impact of this with your employer.
Even if your job does not involve driving, your ability to get to work may be affected if you travel by car.
If you operate machinery at work, it is important to tell your employer about your diagnosis for health and safety reasons. This could also affect insurance cover, especially if you have responsibility for health and safety in the workplace.
Check your employment contract and seek legal advice to support you.