Starting a conversation
Most forms of dementia, at some time during the progression of the condition, affect a person’s ability to express themselves in some way. For example, someone with dementia might experience difficulties finding the right words, or be too confused to get their point across. But the most important thing to remember is that they are still the same person that you've always known.
In May 2019, the Alzheimer's Society published research during Dementia Action Week, which shows that many of us are worried about 'saying the wrong thing' to people affected by dementia. It can feel a little awkward chatting to someone with dementia to begin with, but hopefully these tips from the Alzheimer's Society will help you to start a conversation.
- Give the person with dementia your full attention and try to speak to them face to face. Be patient and give them time to respond.
- Speak clearly and make sure your body language is open and relaxed. Speak in a friendly and chatty way.
- Try to laugh with the person about any mistakes or misunderstandings. The issues you’re dealing with are serious, but laughing together about misunderstandings and mistakes can lighten the mood and make you feel closer.
- When asking questions, you could give a short list of options. Or ask questions that have a 'yes' or 'no' answer.
- Think about if there's something the person with dementia is particularly interested in or that makes them laugh.
The charity also give advice about what not to say. There are some things that can be frustrating for a person with dementia to hear.
- Avoid 'Remember when ...?' This can remind the person with dementia of lost memories, which might be painful for them to recall. Try leading with your own memory or just enjoy the present.
- Try not to say 'I've just told you that.' Reminding someone with dementia of what they've forgotten won't help and it will only make you frustrated too. There's no harm in 'going with the flow'.
- Don't ask 'Do you recognise me?' A more positive introduction is to say your name in a casual way when you first greet someone. This will help prevent the person with dementia feeling bad if they don't remember you.
- Use someone's name rather than saying, 'Do you need some help with that, love?' People living with dementia can feel just as patronised as someone who isn't affected by the disease.
Continuing your conversations
Effective communication is a two-way street, it’s not just about expressing yourself clearly but listening, too. Give your family member or friend time and space to express their feelings.
- Involve your loved one in conversations, both with yourself and others.
- Take time to think about what you say, and how you say it. Your words and tone of voice are both important.
- Avoid speaking sharply or raising your voice, as this may cause distress.
- Speak slowly and clearly, using short, simple sentences.
- Try to get their full attention before speaking. It will probably help to minimise external noises, which could interrupt or distract from the conversation, such as the radio or television.
- Try different ways to get your point across rather than repeating the same thing over again. Rephrase and reword your points.
- Be a good listener. When your loved one talks to you, give them your full attention so they know that you’re listening.
- Tell them what you have understood and check with them to see if you're right.
Talk about them as if they weren't there. Being included in social groups can help a person with dementia to preserve their sense of identity. It can also help to reduce feelings of exclusion and isolation.
Expect them to respond quickly to questions. Don’t put pressure on them to answer quickly, as they could become frustrated or upset if they don’t know the answer.
Interrupt or finish sentences for them, even if you think you know what they’re trying to say. It’s important that they can express themselves.
Dismiss their problem. They might sometimes feel unhappy and frustrated, and might just want someone to listen to how they feel.
We spoke very openly about her dementia, so I was able to reassure her that although I knew she was muddled, I was taking care of everything.
Body language and physical contact
It’s important to remember that a lot of our communication is non-verbal, with gestures, facial expressions and body language telling much of the story. If you know what to look for, these non-verbal signs can help you to overcome some language difficulties.
- A person with dementia may read your body language. Sudden movements or a tense facial expression may cause upset and make communication more difficult.
- Make sure your body language and facial expression match what you’re saying.
- Never stand too close or stand over someone to communicate as this can feel intimidating. Try sitting opposite them, so that you can see each other’s faces and body language.
- Use physical contact when appropriate, such as holding a hand or giving a gentle hug, to show that you care.
- Show that you are listening by making eye contact, nodding and responding. Give plenty of encouragement, both verbal and non-verbal.
- If they get upset, give them time to compose themselves – perhaps take a short break and make a cup of tea.
Discussing dementia care options
If you suspect that a family member or friend has dementia, encourage them to see their GP as soon as possible about diagnosing dementia. This will hep you both to decide on the best course of action and make it easier to plan for the future.
If your loved one already has a dementia diagnosis and is displaying signs of confusion or memory loss, it may not be possible for them to make some long-term decisions. This might particularly apply to finances, accommodation or health. This is when it can be difficult making decision on behalf of that person.
Hopefully, they will have already put a Power of Attorney in place. A legally appointed attorney is required to always act in that person's best interests, which is what you would want anyway.
In practice, a 'best interest' decision is not simply what you think is best for them. You should also consider the person's past and present views, wishes or feelings. They might also have an advance statement or advance decision in place. Always include your loved one by explaining clearly what's happening. Where possible, give simple choices and ask for their preferences so that you (or whoever has Power of Attorney) can take their wishes into account. Weighing this all up and trusting that you've made the right decisions can be a difficult process.
Depending on the decisions that need to be made, you might need to consult other people in your loved one's support network. For example, you might want to ask advice from other family members, their social worker, doctor, solicitor or financial adviser.
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