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People living with dementia reveal 12 ways to improve the way you communicate with someone who has dementia

An online dementia community has created this list of simple tips and strategies to help families, friends and carers communicate more successfully.

‘The biggest problem with dementia isn’t how the person with dementia behaves, but that  people do not know how to behave with them anymore,’ said Tommy Dunne, a train driver from Liverpool who was diagnosed with dementia at the age of 58. ‘We are all social beings with a basic need to communicate and a need to know that what we have said has been heard and understood.’

The suggestions below come from people participating in a project called Dementia Diaries, an online community of people with dementia who regularly record voice diaries of their experiences.

Here’s what they’ve said

1. Eye contact is vital for us as emotions and facial expressions speak louder than words…

2. When you get tense and uptight, it makes me feel tense and uptight.

3. Introduce yourself – don’t assume we remember your name, always say ‘hello my name is John and you’re looking very nice today.’

4. Be a good listener and when it’s time to say goodbye, say good bye rather than see you later if you’re not coming back that day.

5. Never patronise or ridicule what a person with dementia says because we may forget what you said but we won’t forget how you made us feel. Don’t keep correcting us, otherwise we’ll just go back into to our own world.

6. But never assume that we don’t understand, even when we appear to lose our ability to communicate, we still understand.

7. Don’t keep correcting us, otherwise we’ll just go back into to our own world. Speak clearly and slowly using short sentences and encourage us to try and join in and keep the conversation light and humorous.

8. Remember that you’ll have to listen to the same stories over and over again but don’t say you’ve already said that.

9. Encourage us to join in conversations but please don’t keep saying do you remember…it puts pressure on us. Give us time to respond, it takes us a few seconds more to think things through so don’t put pressure on us, if you’re in a conversation you’re having with the person with dementia and we stop to talk please stop and let us have our say otherwise we may forget.

10. Remember that background noise such as TV, radio, people talking or traffic sounds can make it very difficult for the person with dementia to understand a conversation. Be prepared for times when the dementia takes over, there will be days when we are angry and days where we forget where we are in time.

11. Having dementia is like being abroad, you can’t read the signs, people don’t understand you and you can’t understand what they’re saying, try and hang on to every word that the person with dementia is saying and it will help you understand where we are.

12. I like people to treat me truthfully and honestly. And if I’m going to be in a care home, to be treated kindly, obviously, but truthfully and as honestly as they can, while maintaining that kindness. Lying doesn’t help; if you tell people the truth, they’ll come to terms with it eventually.