Telling people about your diagnosis

Telling your family and friends about your dementia diagnosis can be difficult. You might need some time to come to terms with the news yourself before you talk to anyone.

The better that people around you understand what you’re experiencing, the better support they can give you.

Here’s some advice for telling people about your diagnosis of dementia.

Making a plan

You can tell whoever you want to about your diagnosis. It’s your choice. There’s no wrong decision.

You might start by telling your closest family and friends, or a wider group of people.

Work out a plan before you start telling people. Ask yourself:

• Who should I tell?
• Where and when should I tell them?
• What information should I share? Should I tell them about my symptoms, my diagnosis, or both?
• How might they react when I tell them?
• Is it okay for them to tell other people?

If you’re not sure what to do, talk to your doctor, a counsellor or the National Dementia Helpline.

Telling people about your diagnosis

Everyone’s different, but these tips may help you to break the news:

• Tell them in a way you’re comfortable with. Write a letter or email, call or tell them in person. If you’re telling them face-to-face, choose a quiet place where you won’t be disturbed.
• Write down what you want to say beforehand.
• Prepare for any questions they might have, as this can help to reassure them.
• Give them one piece of information at a time. This can help them to process the news.
• Try to make sure they have someone who can support them after the conversation. Let them know that the National Dementia Helpline is also for them.

Coping with people’s reactions

It can be difficult to predict how people will respond to your news. Some people might seem angry or afraid, or they might question your diagnosis. Others might be relieved, particularly if they’ve been worried about you.

Children might find your diagnosis particularly difficult, especially if you have a close relationship. They might struggle if they need to repeat things to you. Or they might feel a sense of rejection if you can’t always remember who they are.

We have a section of our website called Dementia in my Family, for kids who know someone who’s been diagnosed.