Effective communication to support people living with dementia

Most people living with dementia have some difficulties with communication. Some people will have more difficulty than others. Communication involves many different skills, such as: understanding what people are saying, speaking, memory (remembering words and events), putting sentences together with words in the right order, reading and writing. A person’s ability to communicate can vary. For example, it they are tired or in pain, or worried, this can affect their concentration. Communication is also affected by not being able to hear or see properly. We suggest some hints and tips to help you to communicate well with your client.

Tips for effective communication

In the videos below, common communication problems in dementia are explained. Understanding these problems is the first step towards overcoming difficulties with communication. The videos also provide practical tips to help.

The Challenges of Dementia Communication – Professor Alison Wray – Narrated by Tony Robinson

Dementia – The “Communication Disease” – by Professor Alison Wray – Narrated by Tony Robinson

Tips to help people understand what you are saying

Make sure the person is wearing their glasses and hearing aid where needed.

Allow lots of time for the person to respond.

Try to approach the person from the front, gently say name and explain gently what you are there for.

Sit face to face; not too far away.

If you can wear anti-reflective glasses, these stop glare, so the person is more likely to see your eyes (we get a lot of information about how someone is feeling/how friendly they are etc from looking at eyes).

Consider whether you need to wear a face-mask or PPE equipment and how this might make it difficult for the person to understand you.

Reduce background noise.

Make the most of non-verbal communication (facial expression, eye contact, using gestures) e.g., ‘do you want a drink?’ (mime drinking, show cup). Think about the emotional tone of your voice – sometimes this is all people have to go on, so you want to sound calm, friendly and kind.

Don’t give too much information all in one go. Break it up into short phrases.

Have a pen and paper handy and write down important words, or draw a simple picture, to help the person understand what you are saying, if this helps.

Be specific about who or what you are talking about. Try not to use the words he/she/it a lot. People can forget who or what is being talked about.

Avoid commands (‘don’t…) and too many questions (especially ‘why’ questions) – people can feel they are being told off or tested.

Try to avoid asking ‘Do you remember?’ as sometime people might feel tested and worry about their memory.

Consider whether your client might be used to talking in a different language.

Tips to help people express themselves

Your client might ask the same question again and again. This might be because they have forgotten the answer, they want reassurance, they just wish to engage with you, or they are particularly worried about something. You can try giving short answers, writing down the answer, and reassuring the person. You can try distracting them by gently moving on to a new topic.

If the person has difficulty starting a conversation and keeping a conversation going it may be because ideas are hard to come up with. Try taking the lead – talking about old memories and experiences or looking through photos, newspapers/magazines.

Find out if the person has a ‘communication book’ or ‘communication passport.’ This is something that therapists or family and friends might create. It might include written information, photos, or pictures about your client’s background, interests and their likes and dislikes. Looking through this together can get conversations going.

A communication book can also help if your client goes somewhere new. For example, they can be taken with the person into hospital. Alzheimer’s Society provide a booklet called ‘This is me’ . If the person doesn’t already have a communication book you might suggest creating one together with them, based on this template.

Carefully placed notes and calendars, memory boxes (with objects that are meaningful to people) and so on, are aids that can help maintain independence in conversation and keeping on track.

If person is telling you a story that doesn’t fully make sense, it doesn’t matter. Be a supportive and attentive listener. It’s enjoying communicating together that matters, rather than everything being correct. Sharing a laugh together and showing kindness are also important.

‘Talking mats’ is a communication tool. It has specially designed picture symbols, that can be used to help people living with dementia make choices about what they like and don’t like, are happy or not happy with, what they find hard or easy and so on. It requires training and practice. Information can be found here.

The VOICE STUDY looked at how health care professionals talk to people with dementia. The research looked at lots of different types of conversation such as closing a conversation and talk that is used to get tasks done.
They found that people living with dementia were more likely to accept care if the care giver uses phrases such as:

‘I’m just going to quickly comb your hair. Is that OK?’ (the word ‘just’ shows that it’s not a big deal, the word ‘quickly’ shows it won’t take long and the bit at the end is asking for permission).

‘Let’s get you into the shower’ or ‘How about we get you into the shower’ (this indicates that it’s something you are doing together, as a team).

‘I need to change your dressing. Is that alright?’ (saying ‘need to’ shows that it is something that really needs doing, and you are the person to do it, but you are still asking permission).

If a care activity is already underway, people may respond well to direct instructions at each step e.g., ‘Lift your arm for me’ or ‘Try to stand up’ (Saying ‘try to’ shows that you know something is not an easy task and that you appreciate their efforts even if they struggle to manage).

They also looked at how to end a conversation when it is time to leave. Vague statements like, ‘See you soon’ often caused confusion for people and could end up prolonging the ‘goodbye’ conversation. Helpful ways of ending conversations included making a clear arrangement for what will happen next, such as, ‘I’ll see you tomorrow.’ Giving a warning ahead of the final activity also worked, such as, ‘Before I go, we’ll just check you’re comfortable.’

Clearly telling your client that your tasks are finished, such as, ‘That’s all done now’ and using non-verbal actions, such as standing up and clearing away equipment, can also help the person to understand that the task or visit is coming to an end.

The VOICE team put together an online learning resource. It is aimed at healthcare staff but there are some helpful videos with suggestions and tips that can equally apply in social care/home care.

This helpful video may provide further details on how best to communicate with someone living with dementia who may be refusing the social care support they need:

What not to say to someone living with dementia

Certain words or phrases might be upsetting or difficult for your client. Alzheimer’s Society suggest some things to avoid saying and what it might be helpful to stay instead about what to avoid saying:

Managing distress

Sometimes communication can be especially difficult because the person seems distressed or agitated. This is often because of an ‘unmet need’. For example, your client might be in pain but has difficulty telling people, so nothing is done to help.

When someone is distressed and is not engaging with care, try not to assume that they are being difficult on purpose. Try to work out what the need might be. Is it hunger, pain, boredom, a need for comfort? Your job is sometimes to be a detective so you can meet the need.

Take a look at the CEASE model, which is a way of thinking about what unmet needs there might be when someone is distressed.

This is a short animation about fundamental needs in dementia – from the CAIT (Communication and Interaction) and Newcastle Model series, It will help you to recognise unmet needs.

Using white lies

Many carers supporting someone living with dementia find it difficult to know whether to correct the person when they know something isn’t true, or whether it is okay to tell ‘white lies’.

If telling a ‘white lie’ protects the person living with dementia from distress or getting upset, this is generally considered acceptable and is called ‘therapeutic lying’. Examples include ‘lying’ when someone repeatedly asks and gets upset about a relative who has died. Distracting your client and focusing on something positive, such as a happy memory could be more helpful than focusing on the detail of the lie, which may cause further upset.

Ideally, the decision to use ‘therapeutic lies’ should be made involving all the main caregivers including family.

Here is a link to a blog on this topic

Also, this video on ‘Therapeutic Lies in Dementia Care’ from the CAIT and Newcastle Model series,
is helpful.