‘Suffering’ – The language of dementia part 2

I am new to social media and all that it entails so yesterday I watched with interest as a miniature Twitter storm developed. In meteorological terms it was insignificant and of little consequence to anyone other than the direct contributors but I found it interesting on two counts: Firstly because it related to a recent post of mine regarding the language of dementia (please note – it was not about my post – I don’t have that much presence on Twitter having only tweeted 6 times and one of those was accidental). Secondly, because it gave me some insight into how difficult it is to resolve conflict in an online forum using less than 140 characters (answer = not easy).   The issue at the heart of the discussion (if you can call quick-fire tweets a discussion) was a blogger who’d had the audacity / impudence / misfortune to have described people with dementia as ‘sufferers’ in an online post. The ensuing outrage was intriguing to a not-entirely-impartial observer like myself and left me feeling very thankful that I had changed my own blog name (see Mum’s Lost Marbles – the language of dementia) lest I had been dragged into the street and publicly flogged. I have every sympathy with those who are trying to promote positive language in the context of dementia and a great deal of respect for the articulate campaigners who raise the profile of dementia in the public arena but I wonder if, in this particular instance, we are in danger of missing the wood for the trees. Nobody is trying to cause distress here and to castigate well-intentioned individuals for making a valid and useful contribution to our understanding of the feelings of those with dementia or caring for someone with dementia, seems counterproductive.

It reminded me of the international media outrage a few months ago when pre-Oscars, Benedict Cumberbatch had made the catastrophic error of saying ‘Coloured People’ instead of ‘People of Colour’. https://www.youtube.com/watch?v=QG9nMCuV_hE

Surely this affront could only have been dreamt up by White People or People of No Colour / Without Colour / Colourless People (where is Colour anyway if someone is “Of’ it?). Racist language is unacceptable (obvs) as is offensive language directed towards any individual or group but calling someone a ‘teapot’ could be deemed offensive if the word was delivered with enough contempt. It’s all about context and nuance.

Nobody calls someone a sufferer with the intention of causing more suffering and the fact is that people with all sorts of illnesses and diseases suffer (not sure how much longer I’ll be able to use the terms illness or disease – these may also now be classed as prejudicial words). My mum does suffer with dementia. She is a sufferer. I don’t think she’d mind being described as such. The argument goes that this type of language brackets people, makes generalisations, doesn’t take account of the individual and this is a negative thing. But surely, in the face of an obstacle such as Alzheimer’s, what we should be seeking is unity. We must acknowledge our similarities as well as our differences and gain strength from them. Clearly not all people with dementia would class themselves as sufferers but some might. Many carers or family members also would see themselves as suffering in the face of this disease. Are they wrong to classify or describe themselves in such a way? (I note that carers are also not allowed to say that they are ‘living with dementia’ presumably because it is thought to undermine the experience of the person who actually has dementia).   We are literally quibbling over semantics whilst the disease marches on decimating individuals, families and communities in its wake. Harassing those who are seeking to bring comfort and information to carers and people with dementia by demanding that they follow specific linguistic rules may just put them off altogether. I personally want to hear more of these honest, thoughtful and genuine accounts from the front line and if people are deterred through fear of being seen as politically incorrect that would be a tragedy.


By the way – final thought – If anybody wants to access really clear, practical and sensible advice regarding dementia rather than my aimless ramblings do have a look at this site http://www.dementiachallengers.com

It is absolutely excellent.

One thought on “‘Suffering’ – The language of dementia part 2

  1. These words are like a breath of fresh air! So many people worry about ‘saying the wrong thing’ even though the last thing they want to do is cause offence. My father, is 81 years old and is always fretting about the changes in terminology and that he might cause upset if he hasn’t managed to get the wording correct. Working as a nurse for nearly 30 years and seeing people being cared for with many different illnesses in a variety of settings, I know that not quite getting the right term is far less concerning to patients and what is much more important is making sure compassion and kindness is at the heart of the actual care being delivered. Looking forward to the next chapter….

    Liked by 1 person

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