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...

You can follow me on Twitter: @bethyb1886
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Talking the talk

Through my work I often encounter people who say that they cannot talk to someone who has dementia. They are scared to talk to them (as I wrote about here), don’t know what to say, are unsure of how they will respond, or simply can’t see the point. Many times I’ve heard, “Well it’s not like they are going to remember what you say is it?”

I would argue, however, that these attitudes reflect far more negatively on the people expressing them, than they do on the communication skills of the person with dementia who they are seeking to avoid a conversation with. It is a very sad indictment on our own abilities if we cannot find the time, make the effort, and actually learn how to have a meaningful conversation with a person who has dementia.

It doesn’t need to be a full-on debate, a few words can provide immense insight, but how, you might ask, are you going to do that when someone’s dementia is advanced to a point where they are constantly repeating themselves, speak words that you cannot understand or make noises that don’t even represent words? In the last few years of my dad’s life, his noises became more and more dominant in his communication armoury until they were the only sound that he would make, unless of course we put a song on that he loved, then whole words that were perfectly timed with the music would flow from his lips.

So much about communication with someone who has dementia, especially in the more advanced stages, is about the approach that you take. You can assess a situation and decide that you can’t work it out so you won’t bother. Or you can adapt (try singing your conversation rather than speaking it), learn to listen carefully, and choose topics that might spark your loved one’s interest or engage in activities with them that could naturally promote conversation. Often once a song had reminded dad of his vocabulary, the noises he previously communicated with would be temporally shelved in favour of clearly articulated words that, due to their rarity, brought such joy and happiness to everyone around dad, and seemingly to him too.

Those moments were the bright spots in what were often long days of effectively a monologue from us, but it wasn’t always like that. Earlier in dad’s dementia he went through a stage of constant repetition, and I have met many other people with dementia who similarly feel the need to say the same things over and over. Thinking about this logically, it’s not entirely unexpected. If someone cannot remember what they have just said but still have the thought in their head, they are likely to repeat it. Equally, if they feel that they are not being listened to or acknowledged, they may seek to constantly reaffirm what they want you to hear. It can also be a symptom of boredom, a lack of engagement in their surroundings, or a need to break out from their environment to experience new sensations.

Frustrating though constant repetition might be, the worst thing you can do is try to fight against it. Getting angry, being dismissive or rude won’t help anyone, and it’s unlikely to stop the repetition that you are finding so irritating. Learning to go along with it, rather than seeking to correct it, will be a lot less stressful in the long run, and will also avoid that terrible guilt every carer has felt when their exasperation has led them to say something that they never meant, but that may potentially have hurt the person that they love and care for.

Dealing with misunderstanding, as a result of muddled words or words that you cannot fathom, can be equally challenging and lead to very similar emotional fallout. For a long time my dad kept saying something that sounded remarkably like ‘Obama’. Bizarrely he was doing this long before Barack Obama became US president, leading me to wonder if dad actually had a sixth sense about the result of the 2008 American election!

I never did work out what he was trying to tell us, and sometimes guessing can lead you down a path that is even more baffling than when you originally heard your loved one say the word(s) that you cannot understand. I eventually came to the conclusion that dementia can produce a language all of its own, related perhaps to the world that the person with dementia is living in, or possibly entirely unconnected – like an involuntary reaction that has no foundation or meaning and cannot be controlled.

So how do you cope with all the vagaries that come from communicating with someone who is in the more advanced stages of their dementia? My advice would be to apply the 3 golden rules:

1) Don’t ask questions

2) Don’t contradict the person

3) Learn to love their repetition

Of course like all rules you will break them, we did on countless occasions, but never intentionally – it isn’t only people with dementia who can have an involuntary reaction to a situation. We tried to make up for our shortcomings by allowing time, showing patience, keeping our expectations in check and our minds open to what we were hearing, remembering that if something left us bemused, frustrated or hurt, that what the mouth may say wasn’t necessarily a reflection of how the heart was feeling.

Until next time...

You can follow me on Twitter: @bethyb1886

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Don't ignore me

Everyone with dementia has the right to expression, yet a lot of dementia care still focuses on imposing the will of the care provider on the person, rather than assessing what the person themselves actually wants.

Even people with an early diagnosis can walk away from hearing that news, tell friends and family and find that instantly an assumption is made about their ability to make choices in their life. Someone with a diagnosis of dementia is still the same person that they were before they were diagnosed, and with the right care and therapies will hopefully remain that way for the longest possible time.

Much of society assumes that someone with more advanced dementia cannot express themselves if they are unable to coherently articulate, but that simply isn’t true. 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.

Is the person’s body language defensive or welcoming, are they consistently choosing to reach for a particular food or drink over something else, or showing a preference for a particular colour of clothing. How do they react to moving to a different environment (like going outside), what gives them pleasure (anything from favourite music to a warm hug or having their hand held) and what causes distress? What can you do that engages their attention, and keeps it, and what do they appear ambivalent towards?

Playing your part in helping to stimulate expression is very important. If someone with dementia cannot hold a conversation, can they express themselves through music, writing or drawing? However messy what they present to you may be, does it tell you something about how they are feeling? What about sexual expression – many people feel very uncomfortable with the idea that someone with dementia may have sexual thoughts or needs, but they are still a human being. Are they trying to express a need to be loved?

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.

During the last few years of my father’s dementia, he lost his ability to contribute to a conversation and would often appear ‘unresponsive’ to questions or activities around him. Although he was able to say occasional words, his expression came mostly through song lyrics, facial expressions, eye contact, hand gestures, clear enthusiasm for some things (like going outside) and a clear dislike of other things (like having his temperature taken in his ear). He had what I would describe as his ‘blissed-out’ expression, when it seemed as if all was well in his world and he was utterly contented and happy.

As a family we became experts in interpreting dad’s expressions, and because of that we were able to help the professionals caring for him, especially during the times when he was in hospital and surrounded by people who knew very little about him and his reactions. Busy environments, like hospitals, are places where the delicate, intricate way in which someone with advanced dementia expresses themselves can so easily be lost, which not only puts the patient at a disadvantage but also leaves those caring for them in the dark.

As a society I think we have become so heavily reliant on speech as a means of communication (because it suits our need for instantaneous information that is delivered quickly), we are in danger of losing the art of interpreting the needs of anyone for whom speech does not come easily, coherently, or in some cases, exist at all. Without the ability to interpret non-verbal expressions, and in the case of someone with dementia, ally that with everything you know about the person, their likes and dislikes, history etc, you can easily believe that someone is 'unresponsive' when in actual fact they are desperately trying to tell you something.

Even in dad’s final days, he still showed flickers of expression, which only proves how much the human spirit wants to exercise the right of choice right up until the end of life. During that time, dad’s expressions were stimulated by hearing favourite music, comforting words we were reading from books or personal things we were saying to him. At such a sensitive time, seeing his small but hugely significant expressions gave us comfort that dad’s end of life was something that was peaceful and as he wanted it to be.

From the very beginning of someone’s dementia to the end, everyone involved in their care should be putting the person with dementia ahead of their personal opinions or ideas, and that is never more important than when it comes to how that person expresses themselves. 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.

Until next time...

You can follow me on Twitter: @bethyb1886

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