Working & volunteering

I wanted to leave work on my terms when I felt ready.

- Keith, former headteacher, diagnosed at 55 with young onset Alzheimer's disease

Continuing to work

Many people are able to continue working after their diagnosis.  Working can help you feel good about yourself and it helps you to maintain social links, keeps your brain active as well as providing income.  The timing of when you talk to your employer is your decision, but it is important that you check if you are required to tell them about changes to your health that could affect your safety at work, or if driving forms part of your job.  

Who can help you

If you are finding your current role is becoming challenging, why not talk to your employer and discuss whether they can find ways to help you continue to carry out your duties.  Or you might want to consider a change to your working hours or responsibilities at work.  You can get advice from a number of people including your doctor, your trade union, ACAS (the Advisory, Conciliation and Arbitration Service) or Citizens Advice.  Or ask your employer to read our Advice for employers page.  If you are having difficulties doing your current job, leaving does not have to be the end of your working career, you may find a different job elsewhere that suits you better. 

Your rights

A disability is a condition that has a long-term effect on your normal day-to-day activity.  This is defined under the Equality Act 2010.  Dementia is a ‘long term’ condition because it lasts more than 12 months.

Your employer cannot dismiss you, or force you to take early retirement because you have dementia.  Your employer must make ‘reasonable adjustments’ for you so that you are not disadvantaged compared to non-disabled people.  This could include flexible hours, part-time working or aids and extra equipment that will help you do your job.  For more information, visit the government’s information website or our Advice for employers page.

If you are supporting someone with dementia, you might also want to let your employer know so that you can make them aware that you may need time off, or a change in your working hours.  If you support someone in a caring role, you have employment rights and can request flexible working hours under the Work and Families Act 2006.

Get paid for your spare time 

‘Trading Times’ was a winning project in the Design Council Living Well with Dementia Challenge 2011.  It is an online service that connects local people with businesses and individuals who need things done.  Visit their website for more information. 

Leaving work

If you are finding you are becoming less able to do your job, the time may come when you decide you do want to give up work.  There are benefits available if you cannot work.  If you have the option to take early retirement, you should get advice about your pension rights.  You can find more information about this in our Financial and legal section.

Keith Oliver has written a piece for our website about his decision to leave his job as a headteacher, having been diagnosed with young onset Alzheimer's disease and offers some tips and advice on the subject of leaving work.  You can read it here.

YoungDementia UK has created a film titled Adapt - Employment & keeping active which features people affected by young onset dementia discussing how the condition had an impact on their working lives and what they do now to keep active and engaged.  You can watch the film below.

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