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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Harnessing the power of observation

I feel very strongly that one of the most important attributes anyone providing care and support to a person with dementia can have is the ability to observe.

In our helter-skelter, multi-tasking lives it’s easy to lose the quietly reflective quality of observation. Observation cannot be rushed, cannot be combined with anything else if it is to be truly effective, isn’t remotely technological, and may seem both outdated and old fashioned. Surely we need to be stepping in and ‘doing things’ to be providing optimum care and support – right?

Wrong! When you’re providing care and support for a person with dementia, whether you’re a family carer or a care worker, stepping in may well be the worst thing you can do. Of course we need to protect a person with dementia who might walk in front of a car, or burn themselves on the cooker, but in the vast majority of day-to-day circumstances talking a step back can be infinitely more helpful than getting involved.

One of the biggest problems people caring for a person with dementia often site is difficulties understanding the person. Those difficulties mostly arise because of limited or confusing verbal communication – the person with dementia is trying to articulate something, but the person listening to them cannot understand what they need or want.

Often the person providing support will then step in, make assumptions, and undertake an action that they think is needed. Sometimes they may have made exactly the right call, particularly if they are a family carer who has deep personal knowledge of their loved one or a care worker who has built up a really positive rapport with the person, but on other occasions the situation can rapidly unravel.

What then results is that the person with dementia doesn’t have their needs met (which is mistaken for them displaying ‘challenging behaviour’, something I wrote about here), and a vicious circle of frustration ensues for all concerned. With more finely tuned observation skills, it’s possible that such an unhappy episode could have been avoided.

Everyone who is providing care and support for a person with dementia wants to have that deep personal knowledge of the family carer, or the positive rapport of the studious care worker that I describe above. To get those levels of knowledge and rapport, however, involves many different skills, of which observation is a crucial one. 

Granted the family carer often has the benefit of years, if not a lifetime of knowledge about their loved one which, incidentally, is why family carers are so immensely valuable in society, but someone without that knowledge, like a health or care professional, can help themselves and therefore the person with dementia just by understanding the power of observation and interpreting the learning that comes from it.

One of the most widely recognised methods for enhancing dementia care, ‘Dementia Care Mapping’ from the University of Bradford, has observation as a founding principle. In CQC inspections, the 'SOFI tool’ is widely used – this was also developed by the University of Bradford and again is founded on observation. Meanwhile, observation features in the 10 facilitation skills that is part of the ‘Great Interactions’ training given to the staff employed by one of my consultancy clients, MacIntyre. 

So, far from being outdated or irrelevant, observation is actually a vital tool. It literally opens your eyes to what is really happening with a person, and is invaluable when a person’s dementia progresses and you need even more finely tuned skills to help provide them with optimum care and support. The reason it doesn’t feature in care settings as standard practice is that it is time consuming.

We all know how over-stretched social care staff are, and many providers simply do not staff their shifts to allow care workers to take time to observe and reflect upon what they are seeing. Budgetary constraints really are the enemy of observation, as is the need to ‘look busy’. You simply cannot ‘look busy’ if you are observing a person carefully and accurately.

What you are likely to learn from observation is immense, however. 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. 

Observation is fantastic at promoting independence, but the very essence of good observation is about watching rather than doing. We are far too fond of doing things to or for people, without giving them the space and time to potentially accomplish those tasks themselves, or indeed go some way towards accomplishing them.

What observation isn’t is the tool of those who want to stare at a person with dementia. People with dementia deserve dignity and respect, not to be treated like exhibits in a zoo.  Observation should always be discreet, and with a clear objective of improving your understanding of the person with dementia to optimise their care and support.

Equally, observation isn’t the tool of the individual who doesn’t want to help a person with dementia who is in distress or struggling to accomplish something and becoming rapidly more frustrated and unhappy. It should never, ever, be used as a weapon of torture, where you are deliberately leaving the person to ‘get on with it’ regardless of whether they are able to do that or not. 

Making that judgement call is largely about the personality of a person in a care or support role. Those who observe most effectively are kind, compassionate individuals who instinctively know when to observe, how to reflect on that observation, and crucially when to intervene.  To some extent that judgement is also influenced by the culture of any organisation that person is working for. If the culture of the organisation encourages its workforce to observe, learn, reflect and adapt, and recruits workers with the values I outlined above, then observation becomes a regular, seamless part of the care and support being provided. 

What applies across the board, however, is that without observation a person with dementia will never be truly understood by those around them, their care will not be person-centred, and they will not have the freedom to express themselves or exercise their independence. That, I’m sure we could all agree, isn’t a life anyone would choose, so next time you’re with a person who has dementia think about how effective your observation skills really are.

Until next time...

You can follow me on Twitter: @bethyb1886

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