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Working with dementia? What you need to know

Many people who are diagnosed with dementia either want or need to keep working. Find out all the essential information about staying in employment

Coming to terms with a dementia diagnosis can be difficult enough without having to worry about work. If you have a form of early-onset dementia it may be absolutely essential that you continue working, particularly if you have a mortgage and a family to support. Even if finance isn’t your main concern you may still have plenty of skills and experience to contribute to the workplace.

Here’s what you need to consider:

Good to know

• The law is on your side. The 2010 Equality Act requires employers to avoid discrimination and make ‘reasonable adjustments’ to ensure people with dementia are not disadvantaged in the work place.

• If your employer says the company cannot afford to make these ‘reasonable adjustments’ you could apply for financial assistance through schemes such as Access to Work – run by Jobcentre Plus which provides practical support and funding for additional costs associated with overcoming work-related obstacles resulting from a disability or health problem.

What are ‘reasonable adjustments’?

Here’s seven examples:

1. Clear labelling of storage and filing/date systems so that you can organise your work.
2. Rearranging your work space to minimise distraction. This could mean moving you to a quieter area of an office, or putting up barriers or soundproofing to help make your work area quieter.
3. Clear signage so you can find your way around the building/office more easily.
4. A change of working hours and/or flexible working to suit your condition.
5. Giving some of your duties to someone else.
6. Transferring you to a different role which you may manage more easily.
7. Allowing you to take paid disability leave (similar to sick leave) whilst, for example, the adjustments are being made.

Did you know? 40,000 people under the age of 65 have dementia in the UK and 18 per cent of them continue to work after a diagnosis.

What are you most worried about? Three common fears…

‘My boss will think I’m not up to it’
Lack of awareness and stigma about dementia has led to negativity from some employers in the past about the ability of a person with dementia to continue working. However, this is changing fast as more organisations become dementia-friendly, increase their awareness of the condition through staff training, and realise the practical and financial benefits of supporting dedicated employees who are living with dementia for as long as they can.

Fact: Early retirement of people with dementia costs English businesses £627m a year.

‘Workmates will gossip about me’
The stigma of a dementia diagnosis is widely accepted but the increasing number of dementia-friendly communities – and people living with the condition – means this is also changing fast, as more people gain first-hand experience of dementia themselves. Ignorance is usually the main reason for gossip, so if you feel you can be honest with workmates try to tell them about your diagnosis, the more people who understand about dementia the better it will be for everyone.

Fact: By 2025 around 1 million people in the UK will have dementia.

‘I might struggle and end up having to leave anyway’
Dementia is a progressive condition and at some point on the journey you may feel it’s best to stop working. However, that could be quite some time away, and until then, providing both you and your employer are honest with each other, there’s every chance you will be able to continue working either in your current role or in a modified one.

Tip: Make sure you and your boss have regular, structured review meetings to ensure any reasonable adjustments that have been made to help you are still effective, and to also consider any other support you might need.

What else might happen?

If you work for an organisation which has an Occupational Health department you may be referred for an assessment. Don’t worry about this, it’s just another way to explore in more detail what part of your job you can still do and any parts which may be affected. You may also discuss other skills you have which aren’t currently part of your job, and what the next likely step in your condition might be. Remember, you don’t have to panic. The law is on your side.