Communication - It’s more than just words

With over 200 blogs on D4Dementia now, some of them approaching 7 years old in May this year, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. To begin, I want to look at communication.

In 2013 I wrote a very popular blog entitled, ‘Don’t ignore me.’ It was all about how a person with dementia might express themselves, highlighting that;

“Speech is only one form of communication; assessing body language, the choices being made, positive or negative reactions and different behaviours can often tell us a great deal without a single word being uttered.”

It was a blog I wrote mostly to share how my dad communicated, particularly in the latter years of his dementia, in the hope it might help others to understand that a lack of verbal communication isn’t, as many of us might assume, the end of communication.

Losing the ability to verbally communicate is something I see often in people whose dementia has significantly advanced. Sadly those people are still being far too quickly and easily written off, as I described in my ‘Don’t ignore me’ blog where I wrote about that hideous phrase ‘unresponsive’:

“A popular phrase to describe someone with advanced dementia is ‘unresponsive’. In my view it is a description that says more about the abilities of the person using it than the person with dementia. No one is ever 'unresponsive'. You may have to work a bit harder to find something that creates a reaction, but even someone with very advanced dementia is capable of expressing themselves in their own unique way if they are stimulated to do that, and the person enabling that stimulation then has the ability to interpret the resulting expression.”

You might imagine that in 2019 the phrase ‘unresponsive’ to describe the communication of a person with dementia would be obsolete, but not so. I saw it written in more than one care plan in the latter part of 2018, and promptly sought to change the perceptions of the people who’d written those plans.

On the flip side, also in the latter part of 2018 I saw some truly inspirational communication with a gentleman called Peter*, who is in his 50's and has been speech-impaired for most of his life. Peter's family, rather than finding this difficult describe it as a blessing. Why? Because his siblings say it meant that they grew up learning to communicate in multiple different ways, rather than relying on speech as most of us do.

Peter's family have developed, as a unit, a communication system highly personal to them, that combines elements of sign language, body language, facial expressions, body movements, objects and pictures. They emphasise that rather than just using their mouths, they and Peter use their whole body to communicate. So for example, flexing his toes means that Peter needs to move. In order to observe this if Peter is wearing socks, his family bought him toe socks.

While I was with Peter and his family I also saw something I rarely see in mainstream dementia services – mirroring. This is where those communicating with the person mirror their non-verbal signals, enabling the person to feel that those around them have a real rapport and connection with them and share their emotions and ideas, giving the person a greater sense of engagement and belonging. True mirroring is subconscious, and is very different from imitation, which is a conscious effort to copy a person that can be very disrespectful.

It was fascinating to watch Peter and his siblings communicating, proving that a lack of speech is no barrier to a deep and loving connection that hopefully ensures that Peter feels understood, valued and never, ever ignored. Granted, Peter and his family have had years to adapt and refine how they communicate with each other, and listening to their story it certainly hasn’t been easy, but the message I took away from meeting them was that no matter how difficult the circumstances, if you are creative in your approach, focused on what is possible (rather than dwelling on what isn’t), and prepared to adapt and change, you will find those moments of connection that may have seemed illusive. 

Of course when you’re thinking about supporting a loved one with dementia, or as a professional working in dementia care and support, the greatest difficulty is often that dementia is a bit like shifting sands - as fast as you find a breakthrough, something changes and you need to re-evaluate and try something new. Rapid change isn’t something Peter's family have had to cope with as yet, but we certainly had that with my dad.

So, what does all this mean for someone currently supporting a person, with or without dementia, for whom verbal communication is now limited or non-existent. For me, the best first step is observation. The time you might otherwise spend thinking of what you want to say, saying it and trying, perhaps in vain, to be understood needs instead to be spent observing the person. 

Never starring, just discreet observation, taking in everything about the person, what they are doing with their body (or not doing that is otherwise usual for them) and what they are telling you through those movements, perhaps wanting something or someone, indicating that something is wrong (or right, don’t miss the positive things too) or giving non-verbal clues that something is missing. Think of this like an unfinished sentence - how can you help the person finish what they are trying to communicate? You might need props like objects or pictures to assist you. 

Good observation won't just enhance your communication, it has many other benefits too as I wrote about in my 2015 blog, ‘Harnessing the power of observation’:

“Good observation skills can tell you how a person is feeling, what they want or need and how you can best respond to them. It can also give you clues to their personality, their likes and dislikes, and the ways in which you can seamlessly integrate yourself into their life without being obtrusive, interfering and controlling.”

Even for the best observers, taking in this level of detail undoubtedly takes practice - be prepared for a lot of trial and error, a lot of frustration for you and the person, and going down many blind alleys with what you think is meant but really isn’t at all. But for all the difficulties, it is worth it for those special moments where you do both understand each other. As I said in my ‘Don’t ignore me’ blog:

“It can be easy to ignore an expression that isn’t clearly spoken, but the price paid can be huge in terms of emotional, physical and mental distress to someone who is already vulnerable, often frustrated, and ultimately looking for understanding, appreciation and love.”

(*Name changed to protect identity)

Until next time...

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The art of gentleness

Earlier this month I found myself in the honoured position of being a judge for a care awards event. As judges we had six categories to review, and there were some amazing testimonies of the care and support dedicated social care staff had given.

Amongst the many pieces of supporting evidence we reviewed, one short testimony from a lady who was 101 years-old made me think. She commented on how this particular care worker was, "Very gentle and caring."

It struck me instantly that we don't talk anywhere near enough about gentleness as a quality. It’s perhaps taken for granted, a 'given' that everyone providing care and support will be gentle, but gentleness has many facets, and can mean many different things to different people.

My idea of gentle and yours may be very different. How a sensitive person, who feels pain easily, might interpret gentleness is going to be different from a person with a high pain threshold who's always been pretty tough with themselves, perhaps from doing a hard physical job.

How health and social care professionals interpret gentleness is also going to vary immensely. Someone might believe they are being very gentle, when in actual fact the person in receipt of their care or support may feel very differently.

Sometimes gentleness is lost when time is short, there are multiple tasks waiting to be done, our minds are elsewhere, or if a person we are trying to help is verbally or physically unhappy with us. None of these are excuses, just the facts facing many professionals.

In training, gentleness is rarely mentioned. We talk about being person-centred, about compassion and kindness, but gentleness is mostly just assumed. Can gentleness be taught? If you mentor someone with the right aptitude and values closely enough, showing them what a gentle touch and gentle movement is, then some element of learning can happen, but you cannot physically become someone else’s hands so there will always be an unknown quantity of how gentle that person is actually being.

But of course gentleness isn’t just about the physical, however much it is associated with our actions and how we utilise our own physical strength. Gentleness in how we speak, behave and respond emotionally to a person is absolutely vital, but even less thought about than physical gentleness. A short, sharp response to someone, perhaps because we’ve answered their question numerous times already today, or an insincere tone in our voice can hurt someone who is emotionally sensitive.

Emotional sensitivity may exist because the person has always been predisposed to it or because they have an existing mental health condition. It may be a one-off because they are a having a bad day or it may be as a result of living with dementia. Whatever the cause, however, the need to be gentle on the mind is ever-present.

One of the wonderful things about us as human beings is our ability to feel acute emotional responses. Granted, it can be a double-edged sword, but it also opens up a world of feelings that is virtually limitless. When we provide care and support for a person, it’s crucial to be aware of everything about our approach, and consider not just what we say, or don’t say, but also how we say it.

Much like physical gentleness, we may not see anything wrong in snapping an answer, gesturing dismissively with our hands, or responding to a request with delaying tactics (for example, asking the person to sit and wait rather than address their need) – after all people do it to us and we don’t think anything of it. But these are not examples of gentleness, and the person on the receiving end may feel hurt, unwanted or unimportant.

Vitally, these feelings may not be visible to us, therefore we may not even consider that we’ve caused them. One of the great problems with the abandonment of gentleness is that its effects are often completely unseen. They strike at the heart, but the most sensitive people who experience them will often keep them locked in their heart. The result is as harmful as a lack of physical gentleness, just without the bruises to prove it.

I would urge everyone working in health and social care to consider what gentleness means to them. When you think you are being physically gentle, try and go down a notch or two more on the gentleness scale, being even more gentle than you have previously been, and see how the person responds – they may be more comfortable, happier and more secure in your company.

To be gentle on the mind, take a moment to think about your interactions. Draw breath before you dive in with whatever you were going to say or do. And never assume it is only women as the ‘fairer sex’ who need physical and mental gentleness. Men do too, particularly when they are more vulnerable as a result of living with dementia.

Until next time (which will be my 200th D4Dementia blog!)...

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