In plain English
Sharing a dementia diagnosis is a personal decision with no single right answer. This page sets out the considerations, the practical phrasing many families have found useful, and the protections and rights that apply at work.
The choice is yours
You decide who to tell, when and how much. The diagnosis is yours to share or keep private as you choose. Most people find that sharing with at least a few trusted people, at the time that feels right, reduces stigma, brings practical and emotional support and makes everything that follows easier.
Who to consider telling
Three concentric circles help to think this through.
Inner circle
- Spouse or partner;
- Adult children;
- Siblings, particularly those involved in your day-to-day life;
- Closest friends.
Most people share with the inner circle early. Their support will be needed and they will want to know.
Practical circle
- Your GP and memory clinic (already informed);
- Your employer or business partners, if you are still working;
- Your bank, pension provider and insurers, as required;
- Your solicitor, especially for Lasting Power of Attorney;
- Your church, mosque, synagogue or other community group where appropriate.
Wider circle
- Wider family and friends;
- Neighbours, particularly if there is any safety concern;
- Social media (most people choose not to share this widely).
How to phrase it
You do not need a long explanation. Simple, calm wording usually lands best. Examples that families have used:
"I have been told I have early Alzheimer's Disease. It is mild at the moment and I am doing well. I wanted you to know."
"My memory clinic has diagnosed Mixed Vascular and Alzheimer's Dementia. We are putting some practical things in place and I will let you know if I need anything."
The shorter the better. Add detail if asked.
Common reactions to expect
People react in many ways:
- Some respond practically and ask how to help;
- Some go quiet, not knowing what to say;
- Some try to reassure ("but you seem fine"), which can be unhelpful;
- A few withdraw, often because they are afraid;
- Most surprise you positively, given time.
If someone struggles initially, give them time. Most people come round, especially if they have a steer on what helps.
Telling children and grandchildren
Children typically cope better with the truth, told age-appropriately, than with sensing something is wrong and not knowing. The Alzheimer's Society has age-appropriate booklets. Key principles:
- Tell them in simple words, by someone they trust;
- Reassure that no one is going away suddenly;
- Acknowledge feelings; allow questions;
- Plan how to involve them, in ways suited to their age (drawing pictures, helping with simple tasks, reading aloud).
See talking to children and grandchildren for more.
Telling your employer
If you are still in work, you have legal protections:
- The Equality Act 2010 treats dementia as a disability and requires reasonable adjustments;
- The right to request flexible working;
- From April 2024, the Carer's Leave Act gives an employee carer one week of unpaid leave per year (this is for the carer, not the person with dementia);
- Most employers have specific policies that go beyond the statutory minimum.
Most people find the conversation more constructive than feared. Take a written summary of the diagnosis to share if helpful. Discuss any adjustments that would help: reduced hours, a quieter workspace, a clearer task structure, more written communication, more frequent check-ins.
Telling insurers and providers
You must declare to motor insurance, and for some other insurance policies. Failure to declare a material fact invalidates the policy. Pension providers and banks may want to know if you are setting up a Lasting Power of Attorney. Specialist insurers exist for people with dementia (see insurance).
What if I do not want to tell anyone?
That is your right. There is no legal obligation to share with family or friends. The exceptions are insurance, the DVLA and, where applicable, your employer where rights or obligations are triggered. Even so, most people find that having one or two trusted people in the picture eases the burden.
Pacing the wider conversation
You do not need to tell everyone at once. Many people share progressively: inner circle in the first month, practical circle in the next two, wider circle when natural occasions arise (a family event, an Alzheimer's Society sponsored walk). This gives you control of the narrative and the timing.
Frequently asked questions
When is the right time to tell my children?
When you have processed the news yourself enough to be calm about it, and ideally before they notice substantial change. Earlier is usually better than later, with age-appropriate detail.
Do I have to tell my employer?
Where the diagnosis affects work or where you want to use Equality Act rights, yes. Most people find the conversation more positive than feared.
What if my partner does not want to tell anyone?
Respect their wish initially. The Alzheimer's Society can sometimes help facilitate the conversation. Sharing with at least one trusted person usually becomes important over time.
Are insurers required to keep paying out?
Existing policies remain valid provided you have declared the diagnosis appropriately at renewal or as required. Some policies have specific dementia provisions.
Can I lose my job?
Not for the diagnosis itself, in most cases. The Equality Act protects against discrimination. If you can no longer perform essential functions, reasonable adjustments must be considered first.
References
- Equality Act 2010.
- Carer's Leave Act 2023.
- Alzheimer's Society. Telling people you have dementia.
- Dementia UK. Talking to your family about your diagnosis.