Let's stop stigmatising dementia – and give it a new name

Sydney Morning Herald

02-08-2025

The other day I looked up synonyms for dementia – and are they ever a depressing bunch! Such as, on the top of the list: madness, insanity, lunacy, mania, senility, derangement, craziness, delirium, psychosis. Not to mention the imagery that Harry Potter's Dementors conjure up. Talk about giving a dog a bad name!
What embarrasses me, as someone who has talked passionately about the importance of removing the stigma that surrounds dementia, is that it wasn't me who thought to actually question the label itself. Was its very name – dementia – reinforcing that stigma?
That question came from a member of the audience after a talk I had given to a lively retirement village group that included some amazing people continuing to flourish in their 90s. I had spoken to them about the realities of dementia. Not only did a minority of older people have it, I said, but it was possible to go on living satisfying lives for a long time after diagnosis.
And I gave some powerful examples. They included the wonderful Heather Cooper, who appeared in an episode of ABC's The Piano, having taken up the instrument after her Alzheimer's diagnosis. Dementia Australia had advised her to learn a new language. She decided to learn the language of music. And, six years later, here she was, giving a great performance, playing and singing My Favourite Things, before a most illuminating and inspiring conversation with Amanda Keller about her life since that diagnosis.
On an episode of ABC's Australian Story, titled 'Forget Me Not', the remarkable Jim Rogers showed how it was possible to continue living a good life, with early onset dementia, and with the encouragement and support of – again – Dementia Australia.
The audience member who spoke up described himself as a positive person. He suggested the condition of dementia could be named in a more realistically positive way. And he was so right. But finding a such a name through Google Search turned out to be a challenge. 'Alternative labels for dementia' yielded the miserable synonyms I listed above.
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'More positive words for describing dementia' produced a lot of thoughtful links on how to talk about dementia sensitively, rather than in a stigmatising way. But the central word was, still, dementia. And then, somehow, in one of the searches, an answer appeared in what – initially – looked simply like a medical description of dementia, by the John Hopkins School of Medicine.
In the first paragraph of the 'Overview' was a snippet of information that I'd never seen. The term dementia covered 'impaired thinking, remembering or reasoning that can affect a person's ability to function safely'. And then came this remarkable statement: 'the term has been replaced by 'major neurocognitive disorder' and 'mild cognitive disorder' in medical terminology'. Nonetheless, and disappointingly, the rest of the article repeatedly reverted to dementia while describing its variety of types, and of different and progressive symptoms, rather than using the far less emotive medical terminology.