By any other name

I am a follower of Beth Britton’s excellent blog, D4Dementia and was struck by the issues she raised in her post of 21 November.

This concerned moves by the American Psychiatric Association to rename dementia “major or minor neurocognitive disorder”, or NCD for short. I won’t repeat great chunks of Beth’s eloquent article, which you can still read in full by clicking on the link above (but please come back here when you’ve finished!).

Things are sometimes renamed as a way of sanitising their reputation, such as when Windscale became Sellafield. No one was fooled; it was still a nuclear power plant with the dubious distinction of the worst nuclear accident on record until Three Mile Island happened.

However, no one is trying to “sell” dementia or convince us that it’s not dangerous. The motive appears to be sensitivity about stigmatising sufferers. If so, it’s a worthy motive, but one that might be unhelpful outside specialist academic and clinical circles.

It’s worth reminding ourselves what “stigma” actually means. It comes from a Greek word to do with marking or branding, and stigmatising usually means marking someone for disgrace or disapproval. That is clearly not something we want to happen to people with dementia, though we recognise that it always has.

In Catholic spirituality, however, having the stigmata – the wounds of the crucified Jesus – is a mark of honour and often sainthood.

In other words, it is up to us how we look at someone who is marked. If someone carries the mark of dementia, what emotions and actions does it prompt in us? Fear, denial and a tendency to shun and put out of sight? Or, as Beth says, could it prompt “care, compassion, kindness, understanding, fairness and opportunity”?

Calling dementia NCD won’t take away its cruelty. The word “dementia”, which comes from a Latin root and has to do with losing one’s mind, reflects the pain of the experience of dementia. Changing to the rather more aloof NCD won’t make the experience any less cruel for either the patient or those close to them.

There’s another issue. Organisations like the one I manage have been trying to raise awareness of dementia for decades. I worry that a change of name will mean a lot of work and missed opportunity as we try to make people aware that NCD is the same as dementia and that Alzheimer’s is still the main cause.

Which brings me to my final point. There has been an entirely unplanned drift towards treating dementia and Alzheimer’s as synonymous. They are not, of course. Dementia describes a group of symptoms that can be caused by one or more of a range of diseases, more often than not Alzheimer’s disease. This common usage has been picked up by many organisations, including the biggest dementia charities in the UK and, of course, BRACE. This is because we have to communicate with people by using the words that they use.

You will see BRACE collectors wearing sashes with the word “Alzheimer’s” in large red letters. People give to our collections because they identify with this. Some, who have had experience of a different cause of dementia in someone close to them will come over and ask “do you do research into vascular dementia?” (or another form), to which we can reply “yes”. Our strapline says “funding research into Alzheimer’s”, but we also fund current research into vascular dementia, fronto-temporal dementia and dementia with Lewy bodies. This could be extended into other causes of dementia.

Don’t expect to see our collectors wearing sashes with “NCD” emblazoned on them. We don’t plan to baffle the public.