People in the early stages of dementia who are still working may:
have difficulties with concentration and orientation
find simple work tasks more difficult
make uncharacteristic mistakes
have problems with communication, such as finding the right words
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:
physical or mental ill health
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:
jobs that involve operating dangerous machinery
jobs that involve driving
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.
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:
has worked for the employer for at least 26 weeks
submits the request in writing
states whether there has been a previous application for flexible working, and if so, the date of that application
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:
Employment Support Allowance (ESA)
Personal Independence Payment (PIP)
Disabled Facilities Grant
For more information on benefits that the person may be able to claim, see our information on financial help and support at dementiauk.org/financial-help
Download our employment and young onset dementia leaflet
Download and read our employment and young onset dementia leaflet