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2.8 Share your diagnosis, your way

You are in control of who you tell your diagnosis to, how you tell them, and when you tell them.

There is no right or best way to share your diagnosis 

  • Many people chose to tell others face to face, or by telephone.
  • Some people chose to share the news in letters or by email. One person told us she announced her diagnosis through her annual Christmas card.
  • Some people might ask their spouse or someone close to them to share the news with others if they don’t want to have that potentially difficult conversation themselves. 

People who are nervous about sharing their diagnosis might find planning what they are going to say beforehand helpful. They might write down some of the points they want to make. This might include talking about the support that they might find helpful (for more information, read the page Manage how others treat you).

For example, the person might say:

“I’m no longer able to drive, so if you could offer me a lift when we go out, I’d really appreciate it” 

Some people will have preconceptions and stereotypes about dementia, and questions about dementia. You can direct them to this website, or give them a printout of information from this website.  

Who and how to tell

You should be in control of who you tell your diagnosis to, how you tell them, and when you tell them. It’s likely that when you were told your diagnosis, someone close to you was there with you.  It’s your news to share though, not theirs. You decide when you’re ready to let other people know, and who you want to tell. If the person close to you wants to tell others you have dementia and you’re not ready, ask them to wait. 

Many people with dementia find that sharing their diagnosis is a positive experience. Sharing your diagnosis can help your friends and family understand what you are going through, and how they can better support you. Sharing can explain changes in your behaviour or mood that other people may have noticed and can help avoid misunderstandings.  

Share your diagnosis with people who will support you

Decide who you are going to share your diagnosis with. The Circle of Friends Worksheet (click to access a PDF file) might help.