NCD (Otherwise known as dementia)

It was only ever going to be a matter of time before the increased profile of dementia brought about a renaming of it. Thanks to the American Psychiatric Association (Representing 36,000 physician leaders in mental health) their newest version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) will, from May 2013, term dementia as ‘major or minor neurocognitive disorder’.

Why? It is believed that the term dementia is stigmatising to people living with it and is not well accepted. The idea of the new terminology is to focus on the decline from a previous level of functioning as opposed to a deficit. It is also designed to better reflect the variations in the different dementias, rather than emphasising the need for memory impairment to be present for a diagnosis to be made (in some forms of dementia, memory problems are not the first symptom).

It is also worth pointing out that dementia has been successfully renamed in Japan (The old word for dementia ‘chihou’ meant stupid. The New word ‘ninchisho’ introduced in 2004 means cognitive impairment). So all well and good then. Or is it? If you are scratching your head in amazement, believe me you are not the only one. Science meets semantics meets political correctness meets, in my case, frustration. I do not believe that this is a helpful step forward. It is playing with words and creating unnecessary debate whilst the real issues, that are frankly much more difficult to tackle than name changes, compete for attention.

It is true that many people avoid seeking a diagnosis through fear and stigma, but changing a name will not remove that. The root of fearfulness comes from the concerns people have that there will be no support for them as they navigate their way through their journey with this disease, a journey that most never expected to make and are not prepared for. Supporting someone in their present situation, and helping them to plan for the future, is where every effort and resource should be directed if we are really serious about improving the lives of people with dementia.

There is an argument that the Latin origins of the word dementia are in themselves stigmatising. I suspect, however, that most people do not go home and look up dementia in the dictionary when they have a diagnosis of it. Certainly when my father was diagnosed we were united with him in not dwelling on the label attached to his symptoms. We were far more concerned about what the future would hold - how could we support him, where would we find support ourselves, and how would we adjust to the huge change in all our lives?

As for dad, he was only interested in walking, eating, talking, singing and getting on with things – we never sat and discussed the definition of dementia with him and he was totally unmoved by references to it. We had absolutely no problem in telling friends and family that he had dementia (by the time dad was diagnosed he did not have the ability to tell people himself). On breaking that news, my view was that if anyone had an issue with it that was their affair; I had no time or energy to waste on those with small-minded attitudes.

Dementia in itself may not be a perfect word for our present day understanding of this disease, but there comes a point when you have to accept that there may never be a perfect way to describe symptoms that most people will find distressing no matter what you call them. Major or minor neurocognitive disorder will no doubt also find objections. Adding ‘disorder’ to the proposed new name for dementia has its own negative connotations, the introduction of the words ‘major’ and ‘minor’ could confuse people about the severity of their neurocognitive disorder and long-term prognosis, whilst the sheer mouthful of the full name will bemuse many. At best this will lead to the abbreviation NCD, and in many cases, it will result in the explanation, “Otherwise known as dementia.”

If dementia could be associated with care, compassion, kindness, understanding, fairness and opportunity then I think the word would be seen in a similar light to the way in which cancer is now. So much good work is being done to raise the profile of dementia, and I am a firm believer that in all matters of awareness, care and training we should keep language simple (as I wrote about here). Working to explain what dementia means from a practical point of view, and how people can genuinely live well with it is actually far more relevant than the umbrella term for a group of symptoms.

Personally I have no vested interest in decisions over terminology. Whatever the disease we currently know as dementia is called in the future will not affect what I do – my interest is broadly in our older population, particularly people with dementia and their families, and how we can make their lives better. Having walked their path, I know what was important to me over the 19 years of my father’s dementia, and what his symptoms were called did not enter into that.

All of this makes me wonder who would be the winners from ‘re-branding’ dementia? Pharmaceutical companies? Advertising and marketing executives? Businesses that make and print promotional materials? People who are paid to sit in rooms and dream up new ideas? In fact pretty much everyone bar the people who really matter - people with dementia and their families. I suspect that they will just roll their eyes, bemoan the spending of precious budgets on calling dementia something else, and continue to struggle on in their daily lives. Sadly for many, struggle is the optimum word in that sentence, and alleviating that is where all our focus, energy and money should be directed.

Until next time...

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