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Do's and Don'ts for Family and Friends

Do's and Don'ts for Family and Friends

These 'Do's and Don'ts' for family and friends were pulled together by people living with dementia, who are all taking part in the Dementia Diaries Project, an online community for people with dementia to record their experiences.

In their own words:

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

 

  • "What makes me feel safe, secure and happy? A smile!"

 

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

 

  • "Introduce yourself – don't assume we remember your name, always say 'Hello, my name is John' and 'You're looking very nice today.'"

 

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

 

  • "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 our own world."

 

  • "But never assume that we don't understand – even when we appear to lose our ability to communicate, we still understand."

 

  • "Don't keep correcting us, otherwise we'll just go back into 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."

 

  • "Remember that you'll have to listen to the same stories over and over again, but don't say 'You've already said that.'"

 

  • "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."

 

  • "Remember that background noise such as TV, radio, people talking, or traffic etc., makes it very difficult for the person with dementia to understand a conversation. Be prepared for when the dementia takes over, there will be days when we are angry and days where we forget where we are in time. The more that you understand that it's not the person with dementia that is angry with you, the more you will bear what is to come."

 

  • "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."

 

  • "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."

 

For more information, check out the Telegraph's article on the project.

 

 

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