A diagnosis of young onset dementia often affects the person’s ability to work. Read more about how dementia may affect employment and how to manage the changes.
Dementia is a progressive, long-term condition. If someone develops the condition before the age of 65, it is known as young onset dementia.
Unlike older people with dementia, people with a diagnosis of young onset dementia often have:
While initially, a person with young onset dementia may be able to continue to work, it may become more challenging as their condition progresses.
This may eventually lead to them ending their working life earlier than planned.
People in the early stages of dementia who are still working may:
This may result in distress, embarrassment, and a loss of confidence.
Work colleagues may be the first to recognise the signs of young onset dementia, but they might attribute them to another cause such as:
Family members may recognise that the person is struggling at work, but not understand why.
An added complication is that younger people are more likely to have a rarer form of dementia that has different symptoms from the more common types – for example, changes to their personality, behaviour, and social functioning, rather than memory.
This can result in a delay in diagnosis, and in the person getting the support they need to keep working.
Employers may wrongly assume that the changes in the person’s behaviour, productivity or performance are intentional or controllable. As a result, they may start a performance management process, and in some cases, even terminate the person’s employment.
However, Dementia is classified in England, Wales and Scotland as a disability in the Equality Act 2010, and in the Disability Discrimination Act 1995 in Northern Ireland.
This means a person with the diagnosis has a legal protection from discrimination at work.
To ensure the person’s rights are recognised, it’s advisable for them to talk to their employer soon after their diagnosis.
If they feel uncomfortable talking to their immediate manager, they can speak to the Human Resources Manager.
Some occupations legally require the person with dementia to disclose their diagnosis. These include:
If a person believes they are being discriminated against because of their dementia, they should first talk to their employer or Human Resources Manager to try to resolve the issue informally, also putting their concerns in writing.
All employers should have a written complaints policy. If the issue cannot be resolved informally, the person should follow the steps in the policy to escalate their complaint.
It may help to use a mediator or advocate at this stage. The organisation Acas can help with this.
When the employer is made aware of the person’s dementia diagnosis, they should arrange an occupational health assessment to identify the support the person may need to help them continue to work.
An employment action plan should then be made with the person’s full involvement.
Possible reasonable adjustments to make working life easier may include:
It may be helpful for the person with the diagnosis to tell immediate colleagues, as this may lead to them being more understanding and supportive.
Partners or family members of a person living with dementia often have to change their working patterns or leave their employment altogether due to their caring responsibilities.
This may have consequences for their financial stability, mental health and wellbeing – and further into the future, it can be difficult for family members to resume their working lives after taking a break.
Flexible working patterns often allow people to continue to work while caring for someone with dementia.
Under the Flexible Working Regulations 2014, employers must consider these requests as long as the person:
Having a job is not just about earning money. It can also provide purpose, a daily routine, satisfaction, social connections and a sense of normality.
If the person with dementia has reduced or stopped work, finding an alternative occupation or meaningful activity is important for maintaining wellbeing.
This could involve:
A diagnosis of dementia can have a big impact on a person who is self-employed.
They may have to reduce their workload (perhaps taking on fewer projects or clients), allow extra time to complete tasks, make adaptations to their workspace (such as assistive technology), and eventually stop work altogether.
People who are self-employed and have a diagnosis of dementia may be able to claim certain benefits. These include:
If you need advice on employment and dementia or any other aspect of dementia, please call the Dementia Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm, every day except 25th December), email helpline@dementiauk.org or you can also book a phone or virtual appointment with an Admiral Nurse.
Our virtual clinics give you the chance to discuss any questions or concerns with a dementia specialist Admiral Nurse by phone or video call, at a time that suits you.
When her partner Andy was diagnosed with dementia at the age of 52, Christine struggled to know where to turn. She is supporting our ‘We live dementia’ campaign to raise awareness of how our specialist dementia nurses can help.
Andy, 52, lives with young onset dementia. As part of our ‘We live with dementia’ campaign, he shares how his diagnosis affects him and his partner Christine.
Adult Nursing lecturer and a PhD student Tidziwe reflects on the lack of awareness of dementia in her home country of Malawi.
Information and resources about young onset dementia, where symptoms develop before the age of 65.
Caring for a person with dementia can be challenging. There are various options open to you to get some additional support.
Find out more about dementia with Lewy bodies, including what causes it and what you can do to manage its symptoms.
