Often, the first signs of young-onset dementia don’t appear at home or in a doctor’s office. They appear at work: a missed deadline, a forgotten meeting, a colleague who senses something has changed. In our earlier research, people with young-onset dementia told us they wanted to keep working. Work gave them structure, purpose and a sense of who they were. But wanting to stay in work is one thing; being supported to do so is another.
In our new study, we interviewed 18 employers, HR professionals, occupational physicians (who in the Netherlands play a central role whenever an employee is struggling at work or off sick) and dementia care professionals, and then brought them together in two group discussions. Their experiences follow the journey of an employee with dementia in three phases.
Spotting the first signs
Changes at work were often noticed, but rarely recognised as dementia. Managers didn’t think of it, and occupational physicians first suspected stress, burnout or depression. One occupational physician called it “a real trap”. As a result, the right help often came late. Dementia case managers usually only became involved after diagnosis, and rarely at work.
Staying in work
Once a diagnosis was shared, much became possible: adjusting tasks, reducing hours, regular check-ins and understanding colleagues. As one employer put it: “Why does it work? Because we all understand the situation.” But openness cannot be demanded. Privacy law means no one can be required to disclose a diagnosis. What helps is a workplace where people feel safe to share it. Employers were often willing to help, but told us they lacked a clear pathway to do so.
Leaving work with dignity
At some point, work comes to an end. Professionals stressed that this should be a gradual, well-guided process, ending with a proper farewell rather than an abrupt exit. This also means thinking ahead about what comes next. Volunteering can offer structure and purpose after paid work, bridging the gap to day care, which often comes too early.
What can we learn?
The common thread is collaboration: no one can do this alone.
- Employers: start the conversation early, with understanding rather than judgement.
- Professionals: don’t wait until after the diagnosis. Occupational health can work together with the employee and their family.
- People living with dementia and their families: if you want to keep working, it is often possible with the right support, and worth asking for.
Building on these insights, we developed the WorkDEM Compass with people living with young-onset dementia, family members, employers and different work and healthcare professionals. This free website (in Dutch) offers practical tools and guidance to support continued employment for everyone involved: werkendementie.nl.
About the author
Bo Smeets is a postdoctoral researcher at Alzheimer Centrum Limburg, Maastricht University, and a member of the Working with Dementia Network Plus Early Career Researcher Forum. Her research focuses on young-onset dementia and work.
Read more
Smeets, B., Peetoom, K., Janssen, N., Boots, L., Bakker, C., de Vugt, M., & Hendriks, S. (2025). Supporting continued employment for individuals with young-onset dementia: Insights from a qualitative study into key stakeholders’ roles and perspectives. Dementia. https://doi.org/10.1177/14713012251409436
Smeets, B., Janssen, N., Peetoom, K., Boots, L., Bakker, C., & de Vugt, M. (2024). ‘Too young to sit at home’: A qualitative study conducted among employees with young-onset dementia and their relatives. Aging & Mental Health, 28(8), 1119–1128. https://doi.org/10.1080/13607863.2024.2345132
Hendriks, S., Smeets, B., Peetoom, K., Perry, M., Renders, C., Bakker, C., & de Vugt, M. (2026). Developing an intervention to support employment in younger persons with dementia using co-creation: Lessons learned within the WorkDEM project. Aging & Mental Health. https://doi.org/10.1080/13607863.2026.2711810