Can I keep working if I have dementia?

Dementia may be something we think will not be a concern until after retirement. Dementia is increasingly prevalent in people over the age of 65, but it can affect people much younger. Sometimes called ‘working age dementia’, Age UK estimates that there are around 42,000 people in the UK aged under 65 who are living with young onset dementia.

Symptoms of dementia can be more difficult to spot in younger people and someone may be less likely to consider dementia as the cause. Symptoms such as poor concentration, confusion or low mood are easy to dismiss as stress or lack of sleep. If you are diagnosed with dementia while you are still working, it’s important to be aware of your rights at work.

Am I legally obliged to declare my dementia diagnosis to my employer?

As with a disability, you are not legally required to tell your employer about your dementia diagnosis. Some people fear discrimination or simply being treated differently if people find out, but there are benefits to telling your employer. Once you do, they can take the steps outlined below to support you and ease any difficulties you may have at work as a result of dementia. Also, you can tell your employer in confidence and benefit from this without having to disclose your diagnosis to colleagues.

Please note that if you have a driving licence, you are legally required to declare your dementia diagnosis to DVLA (or DVA in Northern Ireland), regardless of whether driving is part of your job.

Your legal rights at work when diagnosed with dementia

Dementia is a progressive disease, so while you may be able to continue working as normal for a while, it is likely that you may find tasks more difficult over time. Many people find the routine and stimulation of working life beneficial to their condition.

The Equality Act 2010 defends certain ‘protected characteristics’ from discrimination, including in the workplace. One of these characteristics is a disability, and dementia is considered a disability in the eyes of the law. Under this law, it is illegal to discriminate against you on the basis of your dementia. This includes direct discrimination, indirect discrimination, associated discrimination, perceived discrimination, victimisation and harassment.

If you are diagnosed with dementia, you have the following rights at work, under the Equality Act 2010:

• The right not to be discriminated against in the workplace. You cannot legally be mocked excluded or overlooked in the workplace because of your dementia diagnosis. Your employer should discuss with you how you would like the matter to be treated. For example, colleagues may think they are doing you a kindness by not inviting you to meetings so as to ease your workload, but this is exclusion and should be your choice.
• The right to reasonable adjustments to enable you to keep working.

The Equality Act also protects you when seeking work, so it is illegal to refuse you an interview or offer you a job based on your having dementia. You are also entitled to reasonable adjustments throughout the interview process. This said, if your dementia symptoms mean that you would be unable to do the job you are applying for to a satisfactory standard, even with reasonable adjustments, employers are within their rights not to offer it to you.

Adjustments you may be able to have at work

Reasonable adjustments are intended to remove barriers that make performing certain tasks difficult due to your dementia. These should be based on your individual needs and what you think may support you to work. Employers do have the rights to refuse an adjustment you request if it is unreasonable, such as if it is not relevant to your job, or for business reasons, such as the company cannot afford it.

Examples of reasonable adjustments you might request include:

• Changes to your role. This could be changing or removing responsibilities that you find more difficult because of your dementia symptoms. For example, if you are usually required to give a presentation at weekly meetings but find you become increasingly overwhelmed and confused when trying to deliver it, your employer could ask you to email a written report instead. Your employer does not have the right to pay you less if you need to relinquish some responsibilities due to dementia.
• Equipment. If there is any equipment that could help you, such as software or equipment to support your mobility, your employer can purchase it for you. For example, if you are struggling with feeling overwhelmed and forgetful, they might buy you a comprehensive planner and allot you time each morning to organise your day. If your employer can’t afford adjustments for you, you could apply to Access to Work, which may fund your equipment.
• Changes to working hours. This could be a permanent change to your working hours, such as spreading them out to allow for regular breaks, going part-time, or flexible hours based on how and when your symptoms make work challenging. For example, if you work shifts but find memory and concentration much more difficult later in the day, or even if you’re affected by ‘sundowning’, you employer could agree to only put you on early shifts.

What if I can no longer work my current my job due to dementia, even with reasonable adjustments?

You should never be forced to retire, but your employer may discuss the idea with you if it would be to your benefit. You also cannot be forced to take redundancy just because of your diagnosis.

If your dementia reaches a stage where you cannot perform the tasks required of your job role, and no adjustments enable you to, your employer does have the right to terminate your employment. This is called fair dismissal. This must be an absolute last resort. 

Your employer must take into account your performance before you developed dementia when making a decision. For example, you could be disciplined and dismissed for repeatedly breaching GDPR rules, such as sharing protected information about colleagues and clients. However, if this only began after you developed dementia symptoms and was as a result of apathy or reduced social awareness due to dementia, your employer should do everything in their power to make reasonable adjustments to your role.

What to do if you believe your employer is discriminating against you due to your dementia

If you think your employer is acting illegally in how they handle your diagnosis, the Equality Act sets out what you should do in this event.

1. Speak to either your employer or somebody from the Human Resources department about why you feel discriminated against and why you believe their conduct is a breach of your legal rights. In many cases, you will be able to resolve the issue informally.
2. If this doesn’t work, set up a meeting with your employer and a Human Resources representative or a mediator to discuss the issue formally.
3. If this still doesn’t work and you want to take further action, you can make a discrimination claim within three months of the event. This could be to a court or an employment tribunal, who can then decide whether your employer illegally discriminated against you.

The rights of your carer at work

Your spouse, or somebody else who would be considered your carer, also has legal rights at work if you get dementia. Under the Equality Act 2010, they are protected from discrimination that is based on your dementia, as this is ‘discrimination by association.’

They also have rights under the Employment Act 2008, including to unpaid emergency leave if they need to care for you and to request flexible working hours, but the latter can be declined if there is a good reason.