Communicating with Dementia

‘Communicating with Dementia’

Last week I crossed a major milestone in my PhD and passed my Upgrade from MPhil to PhD (more about this next time!) so I finally have the time and head space to share another blog post with you.

I have promised you all a post about communication in dementia, so here it is. To do this I’m mainly drawing on my own observations and a teaching session I delivered with Emily Oliver (a fellow Clinical Academic). You can follow Emily on Twitter to learn more about her very interesting research on perceptions of “time” on hospital wards and how that impacts Dementia Care.

I’d like to make it clear at this point that some of this post is referring to people who have reached a stage in their dementia where they are unable to verbally express themselves; I would not want to cause any offense in labeling all people with a dementia diagnosis as having communication difficulties.

 

As I’ve been completing my hospital observations, and analysing them, it has struck me more than ever how important communication is.

By communication I mean the methods and channels we use to deliver and receive information. Both the receiving and sending of messages! This may be shocking – in hospital and care settings it isn’t just about professionals getting OUR message across so people understand what WE are trying to do and say – absolutely not!

The essence of communication is that it’s a 2-way process; people with dementia need to be able to express their views as much as to understand what professionals want to say to them. In our task centred, ‘tick box’ system, this can often be missed!

First and foremost we need to be listeners.

All too often, people’s methods of communication earn them a label or a loss of choice, because it doesn’t fit with what the system knows and is comfortable with. The label of “challenging behaviour” – too readily placed on people – mostly stems from the person expressing, or attempting to express, needs or feelings.

Before labeling someone as ‘non-compliant with care’, ‘resistant to care’, ‘challenging’, or ‘inappropriate’, step back and consider what that person might be trying to express. Are they feeling lonely or confused? Are they walking around looking for someone or something? Do they have a physical need (toilet/hunger/cold/pain)? Do they know what you are trying to do or say to them?

An illustration...

I was observing in one setting using the Dementia Care Mapping tool, noting a gentleman’s behaviours, engagement and well-being/mood. I had reports that he had been known to shout and “be disruptive”. Sometimes he was “verbally and physically abusive” to staff – he couldn’t sit in the communal area as he would “disturb other residents”.

During my observation I noted this man was clearly growing in discomfort or pain in the seat he was in. He lacked social interaction through being in his room and only had this when staff came in to complete a task such as to give him food and drink. He was showing signs of ill-being through his facial expressions, frowning, clenching his fists, shifting his position while grimacing, occasionally aiming a cross word at the TV… but he wasn’t ‘shouting’.

On more than one occasion staff walked past the room glancing in and turned to me to comment on how well he was doing today – because he wasn’t shouting. It was very clear to me, though, that he was not “doing well” at all!

When staff went in to this man to assist him in some way, his presentation transformed. He smiled, nodded and made positive sounds as staff talked and smiled to him, held his hand and pointed at something out the window. Sadly, this never lasted very long – the length of a task was being completed – and in 6 hours of observation he had 5 short episodes of social interaction.

During the observation I saw lots of good care, and the interactions he did have were positive, but the fundamental issue was that people were not stopping to notice what this man was really trying to say. He couldn’t get himself out of the chair but was clearly uncomfortable or in pain. He lacked the social interaction he clearly enjoyed. He had very little to occupy but and he was not enjoying the TV show! But because he was not shouting or disrupting the routine of the home, or anyone else, he was considered to be having a good day and “doing well”.

Maybe in our care we need to step back from our own expectations, and the tasks, lists and routines, to just look at a person and see if they are trying to communicate a message.

Maybe we need to look beyond words.

Communication so much more than words.

Paralinguistics and non-verbal communication make up 93% of how we express ourselves – just think about that for a moment! Tone, pace, volume, facial and bodily expressions… all say a lot more than words!

When we are the ones communicating our message, it’s important to remember that paralinguistics and non-verbal messages are things many people with dementia can often still pick up on – and express – even when they don’t appear to be following our words anymore. Too many words can be more harm than good. A simple “sit down” while patting the seat (with a smile of course!) can feel condescending or rude, but will actually only send the information that needs to be received, and will most likely have a more positive result than “would you like to come and sit next to me?”

So, some practical considerations when we are trying to communicate a message to people with dementia:

    1. Physical considerations
      Can they see and hear you? (glasses/hearing aids/your position/the environment)
      I have experienced people being called and spoken to across a busy hospital bay and the person with dementia who has heard their name is looking around above them as if to look for where the voice is coming from!

      Do they have a physical need such as needing the toilet, being cold, or in pain?
      These are all distractions from them being able to listen to us.

      Where are you approaching them from?
      Approaching from behind can be startling and disconcerting. Approaching from the front can be overbearing and invade personal space. The side may be better but with visual or auditory impairments may have a similar impact as approaching from behind. So I (and many others!) would recommend approaching somebody diagonally at the front, and if they are sitting down then sit or crouch at their eye level, don’t stand over them, and please please please don’t shout at them from across the room!

 

  1. Cognitive considerations
    Processing time
    As the functions of the brain decline it can take up to 30 seconds for somebody to process what has been said. Stop here a moment and say something out loud (e.g. ‘isn’t the weather nice’) then count 30 seconds before answering… it’s a long time! It will feel awkward, but I can’t emphasize enough how much people with dementia need TIME!

    Next time you are having a conversation with anyone try to count how many times you ask double questions or try to fill silences or change the subject because something said led you down another thought route.These are the things you need to NOT do when conversing with someone with dementia.

    Short and Sweet
    Use single words/short sentences, especially when giving instructions or assisting with something.

    Take the lead
    If there is more than one of you, allow one person to take the lead and don’t both try to give the same message at once – this will be confusing and difficult to process.

    – Body Language
    Last but not least, don’t forget your own body language and paralinguistic features!

I hope this has been helpful – I have particularly had health professionals in mind but it’s important for anyone who knows or looks after a person with dementia.

Please do get in touch in the comments section or tweet me @naomi_gallant if you want to discuss it further!

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