Labels

The new DSM 5 (Diagnostic and Statistical Manual of Mental Disorders) ensures that there is a diagnosis for every possible aspect of human (mis)behaviour. There seems to be a “gold standard” of what would be considered “normal”, and the rest of us are truly certifiable. Or certified.
Whilst it is really good that we have a vocabulary for all the millions of variations of being-in-the-world (introvert, extrovert, non-binary etc etc), we have also created a litany of labels for human behaviours and articulations that makes one wonder who of us is not “sick”…
People living with different abilities (and let’s be mindful of ableism) or people living with dementia are often prime targets of our diagnostic labels. In my opinion, people use these labels to hide their inability to understand or really see the person behind the behaviour. As I have often mentioned, every action is a reaction. When we find ways of expressing ourselves difficult, we react. All of us do – I run away from noise, conflict, uncertainty. I am (extremely) grumpy when I am in pain. I get (extremely) irritated when I am tired. I sulk when I am forced to do things that I do not like doing. Whilst we can be clever about our internal locus of control and mindfulness, we react, as much as we profess that we respond.
People living with dementia are almost always on high alert – except for the millions who are drugged or chemically restrained. Like people who are deaf or blind develop highly attuned other senses, people living with dementia have highly developed and sophisticated sensory perception. Smells, tastes, sounds, and of course feelings are almost always on high alert. And they respond to these in ways that are not always clear to us. Here is where we have to become ethnographers – trying to get to the message behind the behaviour, remembering that a lot of the response comes from a place of feeling insecure.
When things change in the world of someone living with dementia it could elicit a response that does not necessarily correspond directly with the stimulus. It might be that the response comes a lot later once the person has filtered the information. And of course the response may seem to have no correlation with the stimulus. The important message is that the person is trying to tell us something, or at least that they are responding to something that they think or feel.
The minute we label this response, we disconnect the person from their being-in-the-world and run the risk of eroding their agency.l, even more so when we attribute all behaviour to “the dementia” or “they are now at that stage”. Of course this is not an easy or simple course of communication. Sometimes we simply do not know what is happening in the lived world of other people, how much more so when that person’s responses are a riddle to us…
So – what is the upshot? Don’t label (he is paranoid). Don’t try to fix (maybe we should hide these objects). Accept (I see you put the flashlight in the fridge). Validate (I can see that you are upset). Be honest (I don’t know how I can help you right now). Take the blame on yourself (I am confused/scared/uncertain). Affirm (we will figure this out together. For now I need a drink…)

Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 Rayne.Stroebel@mindsmatter.co.za www.mindsmatter.co.za

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