Dementia, Pagal, or Neurocognitive Disorder: What Is In a Name?

By Doug McConnell

A recent BBC news story has drawn attention to the fact that there isn’t a word for “dementia” in many South Asian languages and some South Asian people living in the UK still use the stigmatising Punjabi word “pagal”, meaning “crazy” or “mad”. The news story implicitly assumes that the word “dementia” is non-stigmatising but this is disputed. If the word “dementia” is itself stigmatizing, are anglophones really in a position to criticize other languages? Can we adopt a non-stigmatising word for dementia?

“Pagal” is problematic for at least two reasons. First, it reduces all mental illness to a single category unhelpfully effacing the differences between them and thereby preventing targeted treatment and management. Second, to be labelled “pagal” comes with significant stigma. An interviewee in the BBC story, Mr Singh, tells us that his father, once diagnosed with Alzheimer’s, was no longer welcome at social events and his wife would stay at home with him while the rest of the family attended. Dr Sahdia Parveen, a senior research fellow at the Centre for Applied Dementia Studies (University of Bradford), tells us that the stigma can also extend to the family. It can be more difficult to find a partner if one’s relative has dementia because of an assumption that the condition is hereditary.

“Pagal”, or “crazy” for that matter, are obviously not helpful words to describe people living with dementia.

Furthermore, according to Dr Parveen, the lack of specific terms for dementia in South Asian languages has caused difficulties in creating culturally specific tools for dementia diagnosis. Translators without dementia awareness training have unwittingly built misconceptions about dementia into the tools.

One might think that a ready solution here is for those without a word for dementia to simply adopt “dementia”. But people also worry about the stigma attached to “dementia”. In his 2017 Guardian article Jason Corner, a dementia researcher at the University of East Anglia, highlighted the etymology of “dementia” writing, “de means depart from, mens – the mind. How offensive.” In fact it might be worse than this. The Latin dementia literally means being out of one’s mind, from demens “mad, raving””. Whereas evoking a “departure” suggests a process, to be “out of one’s mind” suggests the departure has already happened. In any case, these etymologically informed interpretations of the word “dementia” are an inaccurate and demoralising ways to characterise the typical progression of the dementia syndrome.

Corner suggests we have become desensitised to the negative connotations of “dementia” and that we are reminded of the true meaning of “dementia” when we reflect on the fact that calling people “demented” remains clearly unacceptable.

“We’ve been using the word [dementia] so long that it’s part of the public discourse. We no longer see it as negative. It is perfectly acceptable to call otherworldly demons “dementors” in Harry Potter. But if dementia is fine to use, why wouldn’t you use the word demented? Why does one suffix get me the sack from my job as a nurse, while the other is common language that we try to impose on people already feeling panicked about their loss of role, purpose and the way the community regards them?”

This line of thought suggests that “dementia” is just as bad as “pagal” and to insist that South Asian people use “dementia” would merely add a colonial injustice to the problem.

But is “dementia” really a stigmatizing and depowering term because of its etymology? The meaning a word has is not set by its etymology but by the norms governing its current use. The way ‘dementia’ is used has long departed from the idea of being out of one’s mind, mad, or crazy. In 1798, the French psychiatrist Pinel was the first to use ‘dementia’ to refer to a subset of mental diseases rather than as a general term for all kinds of mental disease. In the subsequent 220 years it has been further refined and is now used in a relatively precise way (at least by medical professionals) to refer to a particular syndrome that can be caused by various pathologies, such as Alzheimer’s and Parkinson’s disease. This medicalised notion of dementia provides some guidance for how family and professionals can best support those who live with the syndrome. It indicates the kind of strategies that are needed to scaffold autonomy and maintain quality of life as much as possible.

So there are good reasons to believe that the modern use of the term “dementia” is much more helpful than “pagal” or “crazy” which do nothing to guide treatment and merely label someone as an outsider.

It is true that the norms governing the very closely related word ‘demented’ have not changed so much and this word continues to express stigma. Perhaps this is because to call someone a “demented person”, reduces them to their symptoms or, in some contexts, this expression is simply intended as an insult. “Demented” also refers to the end state of dementia so it elicits thoughts of a much more advanced cognitive decline and ignores earlier stages when there is still much to live for. None of the implications of “demented” is helpful for someone living with dementia.

But why think the negative aspects of the word “demented” have any bearing on the acceptability of the word “dementia”. Yes, these are closely related words but, when people are alert to the significantly different meanings of subtly different words (or of the significantly different meanings of the same word in subtly different contexts), they don’t have any trouble using those words in the way they intend.

But is the semantic connection between “demented” and “dementia” just so close that the stigma attached to the former inevitably colours the latter? And, whatever one thinks about that, perhaps the historical stigma associated with “dementia” hasn’t really been washed away by 200+ years of medical refinement.

If the modern use of “dementia” still harbours some stigma, perhaps we need a new term altogether. A new term could still play a role in coordinating treatment and care but leave behind the historical baggage of “dementia”. This possibility motivated those writing the DSM-V (the Diagnostic and Statistical Manual which psychiatrists use to classify and diagnose mental disorders) to replace “dementia” with “neurocognitive disorder”.

Problem solved? Well, not necessarily. There is also stigma attached to having a mental disorder and it’s not obvious that this is any less than the stigma attached to a dementia diagnosis. A further downside, at least for the moment, is that the term “dementia” is relatively well understood in the community while “neurocognitive disorder” is not. “Neurocognitive disorder” is more likely to strike people as unclear medical jargon. Even if it happens to reduce stigma, it is disempowering because it makes it more difficult for lay people to work out the implications of what the doctor is telling them. This might be just a “teething” issue until the transition from “dementia” to “neurocognitive disorder” is made but, to my mind, it isn’t clear that the payoff would be worth the transition cost.

This view is supported by the first-hand reports of people living with dementia. People tend to be more concerned with the way “dementia” is used than the word itself. For example, people reject being called “dementia sufferers” because that reduces them to their symptoms. It is better to say “people living with dementia” because that highlights that there is much more to these people than their dementia. This suggests that our efforts would be better spent educating people about how to sensitively use the words we have rather than introduce new words which might be used insensitively anyway.

So should South Asian languages without a word for dementia adopt “dementia”? Well, it’s certainly better than “pagal”. However, if we assume that these communities don’t have an established conception of dementia, then the argument I just made in favour of using “dementia” because of the transmission costs of changing to other words doesn’t have much weight. These South Asian communities might, therefore, be a context where “neurocognitive disorder” should be promoted (if we are sure that the stigma it carries is less than “dementia”).

But one might say that neither “dementia” nor “neurocognitive disorder” should be used because these are both English words and to encourage their use entails a neo-colonial imposition. The ideal solution, then, might be for these communities to come up with a completely new word or words for the dementia syndrome.[1] These new words for dementia could be designed to minimise stigma while also fitting with each community’s language and culture.

[1] Some might say that the dementia syndrome itself is a construct of Western medicine so the idea that a non-Western culture needs a word for it at all is a neo-colonial imposition. While this argument might have weight in regard to some kinds of mental disorder, perhaps schizophrenia or the personality disorders, I think the global prevalence of the pathologies that cause dementia, such as Alzheimer’s disease, and the relatively homogenous presentation of these pathologies speak against the idea of dementia being an exclusively Western concept or phenomenon.