I reckon I have an interest in human behaviour – I think a lot about the things that influence decisions and make us do the things we do.
For the past year and a half I have had the tragic prvilege of being able to spend a couple of days a week caring for a friend of mine who has Lewy Body Dementia. I have also stayed with him for longer periods to allow his wife to have longer breaks.
Spending so much time with him now, as well as the fact that I knew him before he had dementia has shown me some things both about the disease, and about human behaviour and need more generally. I recently did a couple of days training with Dementia UK, which very much affirmed many of the things I had observed and experienced.
Language and Communication
Language is pretty much at the core of what it means to be human. It penetrates every level of our experience and understanding of one another and the world. In a sense dementia is a wrecker of language – both the ability to express what is going on internally and process what is happening externally.
It becomes increasingly difficult to understand what someone with dementia is thinking about, trying to say, and in essense, needing, because their language becomes muddled. Words don’t seem to make sense and there is a struggle to interact with the environment around them so they can’t easily communicate their needs.
And it can be frustrating, especially when the shoe is on the OTHER foot and it is ME attempting to be understood – why doesn’t he understand what I’m asking? Why wont he do what I’m telling him to do? Why wont he eat? Why wont he drink? Why wont he go to bed? Why wont he sit still?
I realised that this frustration is merely a glimpse into what it’s like to live with dementia. In my head what I’m asking and saying is clear as crystal but I’m just being ignored. The more I am ignored, the more irritated I become, and desperate I get to be understood. I might start shouting, I might gesticulate, get up and find things to use to get my point across, I might try doing it on my own, I might keep repeating myself, I might reach a point of aggression, and eventually I might give up, shut up and just withdraw, letting him get on with it.
Well that’s a neat overview of some of the behaviour we see in people who have dementia.
Behaviour that Challenges
We can often think of particular behaviour as being caused BY dementia, rather than being caused at the core of what it means to be human; language. One of the interesting things that came out of the training was Julie Baker’s (one of the trainers) insistence that we replace the term ‘challenging behaviour’ with ‘behaviour that challenges us’, putting the responsibility in the hands of the carer to consider what lies beneath it, and what the person is trying to communicate.
The term ‘challenging behaviour’ suggests that we are needing to manage it, and to minimise the impact of it, rather than feeling challenged to understand it and find out what is being said through it. Because behaviour IS communication, it IS language.
Children Unconsciously Communicate through their Behaviour
When you’re a child and you feel like no one understands you, or you’re scared, unsure of where you are or what you’re doing, what might you do? You might throw something, hit out, cry for mummy, say ‘I want to go home’. You need to feel understood, and you need to feel safe and to understand where you are and why you’re there.
But this is true of people at any age in any situation where we don’t have our basics needs met.
If we feel like people don’t understand us, or we are being controlled, manipulated, out of our depth and unable to understand the situation we are in we can exhibit all sorts of behaviours. Some of these are conscious attempts to communicate, while others are just inbuilt responses to our inner fears and unmet needs. Some of us might withdraw when we’re feeling stressed and under pressure, while others of us could lash out, becoming agressive and confrontational (both of which are natural responses).
It is important to remember that behaviour is communication, and that beneath all behaviour that pisses us off, makes us angry and annoys us about the person exhibiting it, there is something being said. This is why the only way we can truly care for people with dementia is to really KNOW the person…
What were they like before, what did they enjoy, what were their routines, habits, hobbies, what royally pissed them off? Chances are not much of that has changed. But what has changed is their ability to communcate with and process other people and the environment around them.
If we don’t know the person then we don’t know what their behaviours, jumbled words and actions are trying to tell us. It goes with all people, all ages, anywhere (no one has the ability to express their-self perfectly through spoken language).
Here is a truly amazing video of Naomi Feil with a lady called Gladys, showing that even those we might see in the nursing home and write off as ‘in a world of their own’ are reachable. Even the most withdrawn people are still in there somewhere, but it takes a lot of work (trial and error) to understand how to find them. I’m sure there were hours and hours of effort and attempts to undersand what Gladys would respond to, that went before she even got to this point. Beautiful. Never write anyone off.