How do I tell work about a dementia diagnosis?

The facts about dementia and employment

If you are diagnosed with dementia whilst you’re still working, you probably want to know where you stand legally and what might happen in the future. Find out what you need to know about your right to workBeing told you have dementia may not mean you have to give up work. Many people find they’re able to continue doing a job they enjoy, and that there are advantages to remaining in employment, not only financially but psychologically, too. Having a job can provide a great boost to confidence and self-esteem when you have dementia. Crucially, work may also bring with it a sense of normality, and for a person living with dementia this can come as a huge relief.

Four facts worth knowing

1. Young onset dementia affects people of working age, usually between 30-65 years old. It’s sometimes called working-age dementia.2. Early-onset dementia is thought to affect around 64,000 people in the UK many of them are in the middle of their careers and want to continue playing an active part in the work force.3. Dementia is currently costing the UK economy more than £26billion per year, that’s more than £30,000 per person with dementia.4. The average person diagnosed with dementia has been in their current job for at least nine years.

Still want to work? Five steps to success

1. Check your employment contractYou may not be obliged to tell your employer about your diagnosis immediately. Some people prefer to keep quiet about it for a while, perhaps whilst they come to terms with it, or maybe because they’re worried about being stigmatised.But If you are in the armed forces, work on a plane or ship, or drive as part of your job, you must tell your employer straight away.2. Don’t panicThe law is on your side. The Disability Discrimination Act (1995) is designed to protect you against unfair treatment at work. This means, for example, that your employer must make ‘reasonable adjustments’ to allow you to keep working for as long as possible.3. Consider your options Think carefully. Would it be easier for you to continue working if you were allowed to work different hours (perhaps when the workplace is quieter and there are less distractions) or reduced hours? Would you prefer to take on a less demanding role in the company? Would it help if you could use a voice recorder or a check list? Your employer is legally obliged to consider any fair or reasonable requests – although they don’t have to say yes.4. Take advice If you aren’t sure how to broach the subject of your diagnosis at work, you can get advice from a disability employment officer at your local Job Centre Plus. Or go to your nearest Citizen’s Advice Bureau.

Did you know? Employers have a duty of care and a legal requirement to make workplace adjustments for staff with dementia.

5. Move onIf it isn’t practical for you to continue in your current job and you can’t reasonably expect your employer to find you another role, it might be time to consider doing something different. Although it may be very upsetting to leave a job you’ve found fulfilling and enjoyable, try to focus on the skills you still have, and the contribution you could still make, whether in a different workplace or in the community. Part-time work and voluntary work can be very satisfying and reinvigorating, so keep an open mind and ask your Disability Employment Officer for advice. You may even discover new talents you didn’t know you had!