Tips about telling people that you have dementia

Advice about deciding who to tell and how – from Dementia together magazine readers, Dementia Voice partners and Dementia Support Forum members.

Some people know straightaway who to tell first about having dementia. Others need time to decide how to approach it. 

It’s important to tell people when you’re ready. This might be a few close people or everyone – whatever you’re most comfortable with. 

Friends and family 

People can respond very differently when told a friend or relative has dementia. When and how you tell someone depends on your relationship with them.

You can’t control how a conversation will turn out, though there could be things that help. 

Some conversations go better if they’re in private. Other times, hearing each other’s ideas and feelings in a group could help. 

Would more information about dementia help the person understand what you’re telling them? 

If you’re telling children, younger people or someone with a learning disability, you might also want to make sure they feel listened to and heard. 

Other people 

Whether and how you tell people at work is up to you, but some people must tell their employer for safety reasons. 

Talking to your employer means you could also ask for help to continue working

You may want people in shops and other public places to be more understanding. 

You could ask for patience rather than saying you have dementia – it depends on what feels safe and right for you. Using our Helpcards or a sunflower lanyard may help. 

Your tips about telling people

David Joseph says,

‘Consider the pros and cons for each person you want to tell. 

People are different in terms of personality and where they are emotionally in their lives. 

‘Only tell those you want to tell, and only those you think can take it. It is, after all, bad news.’

Jennifer Bute says,

‘I produced leaflets about my diagnosis. One for my family which was more detailed, another for friends, and a short, simple one for acquaintances. 

‘If anyone seemed to then avoid me, I followed it up and asked why in order to educate and reassure further.’

vas says,

‘Prevarication won't help. Tell them. Be prepared some will run into the sunset, others will ignore it and yet others helpful and supportive.’

Willy Gilder says,

‘I know others who have lost friends following their diagnosis, but that hasn’t been my experience. 

I’ve decided to be completely open about my brain disease. 

‘I reckon that the more people there are who are happy to tell their stories, the more we will break down any stigma.’

maggie6445 says,

‘My other half wears a badge that says, “I have dementia, please be patient.” 

‘He has a habit of talking to small children and used to show them his talking watch. I didn’t want this misconstrued.’

Mary Whitaker says,

‘I have a note on my phone which I show waiters, shopkeepers etc. It says in large writing: My husband has dementia so might behave “differently”. 

Everyone I have shown this to is very grateful and incredibly accommodating and understanding.’

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Dementia together magazine

Dementia together magazine is for all Alzheimer’s Society supporters and anyone affected by the condition.
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Dementia together magazine is for all Alzheimer’s Society supporters and anyone affected by the condition.
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