The Renaming of an Illness: “Dementia” vs. “Major Neurocognitive Disorder” – Five Years Out

About five years ago, I noted a big event – after years of debate, the “big APA” folks (e.g., the American Psychiatric Association) had proposed that “dementia” be from heretoforward renamed as “major neurocognitive disorder.” In the article, I noted that there were some good reasons for proposing this change. For one thing, “dementia,” like “senility,” has some negative etymological baggage:

“the origin of the word ‘dementia’…. (is) a bit harsh as well, from the perspective of those who carry the diagnosis… ‘dementia’ originates from the latin term demens literally ‘mad, raving.’”

So, five years out – has this changing of the terminology cause any big changes in the field? It’s worthwhile looking at exactly why the “big APA” decided to make this this change in the first place.

From the DSM-5 online:

“Dementia is subsumed under the newly named entity major neurocognitive disorder, although the term dementia is not precluded from use in the etiological subtypes in which that term is standard….. The term dementia is retained in DSM-5 for continuity and may be used in settings where physicians and patients are accustomed to this term. Although dementia is the customary term for disorders like the degenerative dementias that usually affect older adults, the term neurocognitive disorder is widely used and often preferred for conditions affecting younger individuals, such as impairment secondary to traumatic brain injury or HIV infection.”

So, what it appears the “big APA” folks are saying is that they want us to stop using “dementia” when we’re talking about some disease entities where the term may be in less “standard” use – but if practitioners wish to keep using the term dementia as they always have, well, they can.

Where may the term be in less “standard use”? Well, given the association of the word “dementia” with older adults, nursing homes, and the aged, it seems pretty fair to say that “dementia” means “old people” to most. In practice, it’s worth noting that in my tiny corner of the geropsychology world, “dementia” continues to be the standard term. This may be for a number of reasons: for one thing, “major neurocognitive disorder” is well, rather wordy. Also, family members and consumers are not aware of the term. They typically have heard of “Alzheimer’s,” and may be aware of the term “dementia” (and at times, often ask “is dementia different than Alzheimer’s”)?

Moreover, it’s not particularly clear that the term “major neurocognitive disorder” has quite seeped into the public consciousness yet. Out of curiousity, I did a quick “Google Trends” dive, looking to compare the terms “major neurocognitive disorder” and “dementia.” Suffice it to say – while searches for the term “major neurocognitive disorder” are on the rise, it seems pretty clear the latter term has gained comparatively zero traction.

Searches for the term “dementia” appear to have over forty-plus times the
average volume, and continue to rise year upon year. It’s worth noting the same is true for searches within Google Scholar – which is a pretty good proxy for search use amongst academics and clinicians – a search for articles between the years 2015-2019 for the term “neurocognitive disorder” yielded just under eight thousand hits. “Dementia,” in contrast, yielded over a quarter million. Clearly, dementia wins.

This probably reflects a few things. One – the term “dementia” is entrenched as the “standard” term. Two, it probably reflects that the clinical wordiness of the new moniker is too unwieldy for consumers, and probably for clinicians and academics as well.
Would the world of dementia care be different if somehow we all got on board and dropped the use of the term “dementia” outright? Would this translate into more humane and person-centered care for persons with dementia / major neurocognitive disorder? At this point, we don’t know, because five years out from the APA’s grand semantic shift, “dementia” continues to rule the diagnostic roost.