An introduction to understanding your rights and responsibilities – employees
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.
If You Have Dementia – Your Rights at Work
You are protected by law. The Equality Act 2010 says employers cannot treat you unfairly because you have dementia.
The law must also be interpreted and applied in accordance with our European Convention on Human Rights. This includes employment and equality law. One of these rights is to respect our right to private and family life (to respect how we wish to live our life).
What does this mean in everyday terms
Your employer cannot dismiss you because you have dementia, force you to retire, leave you out of meetings or training, or treat you worse than other employees. They cannot make offensive or inappropriate comments or “jokes” about your memory or any other symptoms, and they cannot pressure you to leave “for your own good”. Your employer must make reasonable adjustments to help you do your job. They should therefore talk to you about what would help.
Choosing Whether to Tell Your Employer
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.
What Are Reasonable Adjustments?
Reasonable adjustments are changes to help you at work – not just to do your job, but to ensure you are safe, comfortable, and treated with dignity. Every person with dementia is different, so adjustments should fit what you need.
These might include practical changes like written instructions instead of verbal ones, checklists for daily tasks, extra time to complete work, and regular breaks. They may also include workspace adjustments such as a quieter desk location, or additional support like a colleague buddy, regular meetings with your manager, or permission to record meetings or take notes.
Important: Your employer must discuss these with you – they shouldn’t just decide what’s “best for you” without your input.
Your Employer Is Responsible When Colleagues Treat You Unfairly
If a colleague makes inappropriate comments about your dementia, or a manager pressures you to retire, or team members exclude you from meetings—your employer is legally responsible. They cannot say “we didn’t know” or “it was just that one person, not us.”
This is the law. It means employers must create a workplace where discrimination doesn’t happen in the first place.
Example: What’s Not OK
John was diagnosed with early-stage dementia. When he told his manager, they immediately suggested he should consider retirement “before things get difficult.” Colleagues started excluding him from team meetings and making decisions “to help him.” John was still fully capable of working with some support.
The employer thought they were being kind, but they were breaking the law. They should have discussed what adjustments would help John, stopped colleagues from excluding him, and focused on what he could do rather than making assumptions about what he couldn’t. John brought a successful discrimination claim.
Myths vs Reality
Myth: “People with dementia can’t work safely” Reality: Many people with early-stage dementia work effectively with appropriate adjustments for years.
Myth: “It’s kinder to encourage them to retire” Reality: This is discrimination. The person has the right to decide, with proper support and adjustments.
Myth: “Dementia is just part of getting older” Reality: Dementia is a medical condition covered by the Equality Act 2010, regardless of age.
Myth: “We’re too small to afford adjustments” Reality: Many adjustments cost little or nothing. “Reasonableness” takes account of employer size and resources.
Act Quickly: The 3-Month Rule
If you’ve been discriminated against at work, you must act within 3 months of when it happened. This deadline is strict—missing it usually means you lose your right to make a claim.
What you must do:
Before you can take a case to an employment tribunal, you must contact ACAS first. This is required by law and it’s free.
Call ACAS on 0300 123 1122 or apply online at Notify Acas about making a claim to an employment tribunal.
They will try to help resolve the issue without going to tribunal. Even if this doesn’t work, you need the certificate they provide to proceed with a claim.
Important: The 3-month clock is ticking from when the discrimination happened—don’t wait. Get advice quickly from ACAS, Citizens Advice, or your union if you have one.
