After you’ve been diagnosed: talking about dementia

When you've been told you have dementia, there are probably people you want to turn to first or who it's important to tell. Read our advice on talking about dementia, including having conversations with children of different age groups. 

Talk to people about your diagnosis when you're ready. Be honest and let them know how you're feeling. For most people, talking is a good way of coping with emotions.

The relationships you have with people work in different ways, so bear this in mind when you talk to them about dementia. You'll find your own way of having this conversation that feels comfortable to you. You might even find that some humour helps make it easier to talk about.

When you were first told you have dementia, you may have felt a range of different emotions. When you tell other people about your diagnosis for the first time, they may feel a range of emotions too, including shock, sadness or fear. Any feelings will be individual to the person - there is no 'right' or 'wrong' way for people to feel about your dementia.

You might find it helpful to talk to a professional about your thoughts and feelings. Ask someone involved in your care, such as a GP or community nurse, to help you find someone who can support you to adjust. You may also want to involve someone who is important to you - such as a partner or friend - in these conversations.

Talking to children of different age groups

Children and young people will respond to the news of your dementia in different ways. This will partly be affected by their age and how they tend to deal with things.

Pre-school

At this age, children are mostly interested in what's going on at the moment. Explain your dementia to them as simply as you can - for example, tell them you might not remember things you've talked about, or may lose things sometimes.

Primary school age

Children at this age can be very honest and ask difficult questions. Encourage them to do this and say how they feel. From the age of eight or nine, children can often understand more difficult concepts like illness and death. Sometimes children of this age try to hide their feelings. They may be anxious - this could show in disturbed sleep or bad dreams, or aches and pains that don't seem to have a cause. It's important to listen to their worries.

Teenagers

Teenage years can be difficult because of the changes people go through at this age. Try to allow teenagers the time and space to come to terms with your dementia in their own way. They may not show their emotions and may be easily embarrassed. Show them you are there to listen to them but try not to make them talk about their feelings if they don't want to or are not ready.

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