An introduction to understanding your rights and responsibilities – employers
Lyndsey Bengtsson, Jill Stavert and Connor McDonald
If you’re working with dementia, or employing someone who is, understanding your rights matters. Over 40,000 people under 65 are living with dementia in the UK. Many are still working or want to keep working. With an ageing population and workforce, dementia is set to become an increasing workplace issue. This blog explains the essential employment rights for people with dementia and what employers need to know.
This blog provides general information about employment rights. It is not legal advice and cannot replace advice specific to your situation. If you are facing workplace issues, we strongly recommend seeking legal advice from a solicitor, your trade union, or an organisation like Citizens Advice.
For Employers – Your Legal Duties
The Equality Act 2010 is clear: you cannot discriminate against employees with dementia, and you must make reasonable adjustments when needed. You must also respect your employees’ European Convention on Human Rights when applying employment and equality law.
When an Employee Discloses Dementia
When an employee tells you they have dementia, your first step is to listen without making assumptions. Everyone’s experience is different, and early-stage dementia doesn’t mean inability to work. Ask what they need rather than telling them what you think is best.
Have a proper discussion about which aspects of their role might be affected, what would help them continue working, and what their concerns are. Document this conversation carefully. Consider seeking occupational health advice to get expert input on appropriate adjustments, but ensure assessments are done with the employee’s consent and don’t use occupational health simply to “prove” someone can’t work.
Implement agreed adjustments promptly. Put them in writing, make sure all relevant staff know about them (with the employee’s consent), and ensure colleagues understand their role in supporting their colleague. Review the situation regularly because needs may change over time. Check what’s working and what isn’t, adjust as necessary, and keep communication open.
Protect against discrimination and harassment by briefing all staff on treating colleagues with respect. Make clear that discrimination won’t be tolerated, monitor the situation carefully, and act immediately if problems arise. Document everything: records of discussions, agreed adjustments, review meetings, and any issues and how they were addressed.
You don’t have to tell your employer about your dementia diagnosis—it’s your choice. Some people choose to disclose so they can get adjustments and support. Others prefer to keep it private, especially in early stages when they’re managing well.
If you do decide to tell your employer, this can feel daunting. You might worry about how they’ll react, whether you’ll be treated differently, or if your job will be at risk. These feelings are completely understandable. Remember: the law protects you from unfair treatment, and your employer has legal duties to support you.
If you choose not to disclose, that’s also valid. However, your employer can only make adjustments if they know you need them. You might want to seek advice from Citizens Advice, your union, Alzheimer’s Society or Alzheimer Scotland about your specific situation.
Getting It Wrong Is Costly
Discrimination claims can result in unlimited compensation. Recent dementia-related cases have resulted in awards of £20,000-£50,000 or more. But beyond financial costs, you lose experienced staff, damage your reputation, face negative publicity, and lower morale among remaining staff. Getting it right keeps valuable employees, shows all staff they are valued, builds a positive workplace culture, and protects you legally.
Common Mistakes to Avoid
Our research shows common problems that lead to legal claims. The “quiet resignation” happens when an employee leaves after diagnosis without any discussion of support or adjustments. “Helpful” harassment occurs when employers make decisions “for their own good” without consulting them – like moving their desk, excluding them from meetings, or suggesting retirement.
Some employers use the “age excuse,” treating dementia as just “getting older” rather than a medical condition requiring adjustments. Others show “capability confusion” by moving straight to capability procedures without first considering reasonable adjustments.
If ACAS Contacts You
If ACAS contacts you about an employee complaint, take it seriously—this could lead to a tribunal claim. Respond promptly, consider whether the issue can be resolved, and get legal advice. Don’t treat the employee any worse for raising concerns.
Where to Get Help
If you’re facing discrimination now (time-sensitive):
ACAS Early Conciliation: 0300 123 1122 (you must contact ACAS before making a tribunal claim). For general employment advice, call the ACAS helpline on 0300 123 1100.
Citizens Advice can help with tribunal claims and provide free, independent advice:
- England and Wales: Contact your local Citizens Advice
- Scotland: Citizens Advice Scotland – 0800 028 1456
If you’re a union member, contact them immediately for support.
For information and ongoing support
If you’re facing discrimination now (time-sensitive):
ACAS Early Conciliation: 0300 123 1122 (you must contact ACAS before making a tribunal claim – this applies across the UK, including Scotland). For general employment advice, call the ACAS helpline on 0300 123 1100 or visit www.acas.org.uk
Citizens Advice can help with tribunal claims and provide free, independent advice:
- England and Wales: Contact your local Citizens Advice at www.citizensadvice.org.uk
- Scotland: Citizens Advice Scotland – 0800 028 1456 or visit www.cas.org.uk
If you’re a union member, contact them immediately for support.
For information and ongoing support:
Alzheimer’s Society offers employment support services across England, Wales and Northern Ireland at www.alzheimers.org.uk/categories/support/work-employment
Alzheimer Scotland provides Scotland-specific support:
Visit www.alzscot.org
24/7 Helpline: 0808 808 3000
Dementia advisors who understand Scottish employment law and services
Support navigating Scottish-specific resources
