Ce qu'il ne faut pas dire à une personne atteinte de démence

Nothing prepares someone for the challenges of a démence diagnosis. It can bring with it many difficult emotions such as fear, sadness and anger. And individuals with the condition can feel isolated - especially when people around them don't know what to say.

Wendy Mitchell was told she had early-onset Alzheimer's in 2014 at the age of 58. Since then, she's encountered many tricky conversations with people being unintentionally hurtful or underestimating her capabilities.

"Often a diagnosis of dementia sinks people into dépression because they immediately think of the end stages," she says. "But dementia has to have a beginning and a middle long before the end stages appear. During this time there's so much life still to be lived if only people around us would give us the confidence to believe in ourselves."

While the condition does get worse over time, being pitied or patronised isn't helpful and can just make the person feel more alone, she says. There are many things people with dementia can still do. Mitchell blogs about her experiences and has even written a book called Somebody I Used to Know.

Although language and communication can become more difficult over time for somebody living with the disease, there's no one-size-fits-all rule. There are many different types of dementia and everyone will experience the condition in their unique way. But good communication can help somebody with dementia to live well.

What to avoid saying to someone with dementia

You may well be worried about saying the wrong thing, but there are a few tips you can try, to avoid causing upset. If you're not sure how to approach a topic or conversation, check with your loved one to see what best helps them. Don't make assumptions.

But there are a few general rules about what you shouldn't say, according to Helen Foster, director of operations at Alzheimer's Society, particularly as your loved one's condition becomes more pronounced.

'Remember when ...?'

Asking about specific memories can cause distress. It's tempting to want to jog someone's memory so you might be able to reminisce about happy times, but this can be embarrassing or frustrating for the person if they can't recall the event.

You don't need to avoid talking about the past. Instead of posing a question, make it a statement about you. Lead with 'I remember when ...'. This puts less pressure on the person to search their memory.

'That's not right'

Dementia UK's consultant Admiral Nurse Emily Oliver points out that when communicating with someone with dementia, it's vital to remember that what they are feeling, experiencing or saying is what is true to them - even if it's not quite based in reality.

"Often, people with dementia may mention something from the past or say something that may not be true in the present day," she says. "It is important that we try not to disagree with this when responding."

She explains that this communication technique is part of a concept called 'validation therapy'. Here, more emphasis is placed on the emotional aspects of a conversation and less on the factual content. It can help people talk to individuals with dementia with more empathy and understanding.

'They died years ago'

One of the hardest aspects of the later stages of dementia is the possibility of the individual forgetting a bereavement that happened a long time ago. As painful as it may be to hear that they've forgotten, reminding someone with dementia about a loved one's death can be traumatic. It's a really tricky one to handle, but it's a good idea to show as much sensitivity as possible.

"When someone with dementia is asking for their parent, it is likely that their parent is deceased. However, instead of stating this as a fact, it may be more beneficial to address the emotion behind this," says Oliver. "Perhaps the person with dementia is feeling worried or anxieux and is looking for reassurance. 'Tell me about your parents' may be a good response."

That way you're neither agreeing nor disagreeing with what they are saying. But you are acknowledging how they are feeling at that moment in time.

"Not only is this approach likely to reduce distress but it also treats the person with respect, showing that their opinions and beliefs are acknowledged and valued," says Oliver.

Complex sentences

Try to communicate as clearly and as simply as you can. Long, complicated sentences can be hard for some people with dementia to understand as it can be difficult to process several ideas at once.

Communicating with someone in later stages of dementia can be challenging but that doesn't mean you can't have enjoyable and positive interactions.

"It helps to go somewhere quiet, keep your body language open and have the person's full attention before you begin," suggests Foster. "Communicate in a conversational way without asking too many questions and stick to one topic at a time."

Speak slowly, clearly and make eye contact

Think about what you're saying and how you're talking. Speak clearly and slowly and use short sentences. And don't forget to make eye contact. Give the person time to respond, because they may feel pressured if you try to speed up their answers. Don't interrupt them.

Think about your body language

Quality interaction isn't just about what you say - gestures, movement and facial expressions can also help you get a message across and convey emotion. If they're sitting, standing above them can be intimidating, for instance.

Take notice of their body language for clues about how comfortable they're feeling with the conversation. Make sure to keep your tone of voice positive and friendly too.

Be positive

Above all, Mitchell says, remember that being negative isn't going to make your loved one feel good. And there's far more to them than just their condition.

"Obviously there are negatives and bad times, but if negative words are all we hear we begin to believe them," she says. "Instead I'd like people to see me for what I can do, not what I can't. I can't cook, I can't drive, I get lost, but I don't dwell on the negatives. Instead, I'm an author, a blogger, I'm a pretty good photographer. So look at me as a person, not the dementia and you will see so much more."