A woman working on a laptop

Working with early onset dementia

Early Onset Dementia

Dementia is the degeneration of the brain that causes the gradual decrease in the individual’s ability to remember, communicate, reason and think. Early Onset Dementia is considered when it affects those under 65 years old. Sometimes personality, mood and behaviours can be affected. Everyone’s experience of Early Onset Dementia is different, and the progression of the condition differs from one person to the next.

Impact of Early Onset Dementia on work

Many people can continue to work and are able to do so for many years after their diagnosis. Continuing with work has many benefits. It can help to maintain self-esteem, social connectedness and to help keep the brain active as well as providing an income. It is important to know what support is available for any colleague or employee that may receive a diagnosis of Early Onset Dementia.

How can we support people with Early Onset Dementia?

  • Improve your knowledge. So you can feel confident to have conversations about their diagnosis and what is available regarding support.
  • Increase awareness and educate employees. Enabling everyone to have the confidence to support each other if an employee or colleague were to be diagnosed or experience symptoms related to early onset dementia.
  • Get to know all employees. This creates good rapport and so any challenging future conversations don’t seem as daunting.
  • Don’t assume, always ask. It is imperative that we ask questions and not base our support on our opinion. We cannot assume we know what would be helpful or unhelpful for an employee unless we give them a chance to tell us.
  • Consider the time and place, active listening and your response. Make the employee as comfortable, allowing them shared their experience, feel heard and supported.
  • Consider adjustments and flexibility to help them thrive such as changing working hours and changing their schedule to allow more time for the individual to rest, having work-from-home days and managing the workload allowing individuals to completing one task at a time before moving onto the next task.
  • Having access to technology; a computerised diary to help remember meetings and deadlines and arranging meetings in familiar locations where they’re more likely to perform better.
  • Every episode is different. Consider that every diagnosis is different and will vary from one employee to the next. Everyone may need to be monitored and supported differently. Keep a non-judgmental and curious approach so you can support each employee appropriately.
  • Everyone needs to work together. Having everyone co-operating together, can make the experience for the employee easier. This includes other colleagues, HR, OH and any other support or services used. Having an effective plan and collaboration between everyone enables the employee to thrive.
  • Arrange regular meetings. This can help maintain relationships, understand the employee’s experience at work, and manage any further adjustments that might need to take place.

What support is available?

Take a look at the following resources: Young Dementia, Dementia UK, Alzheimer’s Society, Access to Work Scheme , The Equality Act 2010 and NHS.

Consider resources for financial and legal support. As a manager, leader or supporter of others familiarise yourself with what is available such as Citizens Advice, Money Advice Service or government schemes such as ‘Access to Work’ for funding that gives them extra support in work.

Think internal resources. Your peer support group, your own line manager, HR, OH and EAP.

Top Tips

• Consider your duty of care to individuals with a diagnosis of Early Onset Dementia who protected by The Equality Act 2010 whilst at work.

• Be confident in your knowledge around Early Onset Dementia and what it means in the workplace.

• Work together as a workforce to make it a comfortable experience for everyone.


Young Dementia UK. (2020) About Young Onset Dementia. Retrieved here https://www.youngdementiauk.org/about-young-onset-dementia-0

Young Dementia UK (2020) Working & Volunteering. Retrieved here https://www.youngdementiauk.org/working-volunteering

Alzheimers Society (2020) Working & Dementia: How to tell your employer. Retrieved here https://www.alzheimers.org.uk/blog/work-dementia-how-tell-employer-diagnosis

Alzheimers Society (2020) Find groups in your area. Retrieved here https://www.alzheimers.org.uk/find-support-near-you