Mike Zuendel found out the way many people now do: alone, on a weekend, scrolling a patient portal. The neurocognitive testing and a PET scan had come back, and there it was in clinical prose, amyloid throughout his brain. He has described the moment since in interviews, the tears with his family, the decision not to hide it. What he did next is unusual. He founded a non-profit called the Initiative to Change the "D-Word", and in June he became the lead author of a peer-reviewed journal Comment making a blunt claim: the word "dementia" should be retired.
The piece ran in Communications Medicine on 12 June 2026, written with Dani Cabral, founder of the Phoenix practice BrainLove, Ana C. Pereira of the Icahn School of Medicine at Mount Sinai, and Eric M. Reiman, chief executive of the Banner Alzheimer's Institute. Its argument is not that the word is unkind. It is that the word does measurable damage: that its continued use, in the authors' phrase, "constitutes a public health harm" by threatening personal identity, deterring people from seeking care, discouraging research participation and adding avoidable suffering. They point out that psychiatry has already moved, the DSM-5 having adopted "mild" and "major neurocognitive disorder", while clinics, journals and newsrooms carry on as before, and while the adjective "demented" still appears in peer-reviewed literature and in descriptions of patients. Their proposed replacements are the plain ones already in use: mild cognitive impairment, progressive cognitive impairment, neurodegenerative disease, or simply the name of the disease a person actually has.
Two things need saying straight away, because they change how you read it. First, this is a Comment, not a study. It reports no new data, no cohort, no trial. Second, the journal's own note states the manuscript was considered suitable for publication without further review, and the authors declare interests: Zuendel founded the non-profit that advocates exactly this position, sits on the board of the Banner Alzheimer's Institute Foundation, sits on Altoida's scientific advisory board and has consulted for Eisai. None of that makes the argument wrong. It does mean the case rests on the evidence it points to rather than on evidence it generated.
So what does that evidence look like? The strongest supporting fact is that a country has already run this experiment. In 2004 Japan's Ministry of Health, Labour and Welfare replaced "Chiho", a term built from characters meaning idiocy and dullness, with "Ninchi-sho", closer to "cognitive disorder". A cross-sectional survey published in Brain and Behavior asked 155 family members accompanying relatives to three hospitals how the new word felt; 71.6 per cent agreed they felt less discomfort with it than with the old one. That is a real finding about how a word lands. It is not a finding about diagnosis rates, or clinic attendance, or trial enrolment, and it is a snapshot of families at three hospitals, not a before-and-after test of the change itself.
The counter-history matters too. When a campaign in China proposed a new Chinese term meaning "brain degenerative disorder", the professional community rejected it as inaccurate, and the Hong Kong Psychogeriatric Association wrote publicly to the government in disagreement, as Helen Chiu and colleagues recorded in International Psychogeriatrics in 2014. A working group of ten professional bodies eventually proposed a different phrase. Renaming, in other words, is not a single decision but years of argument about what is both kinder and truer, and a euphemism that blurs what is happening to a brain helps nobody.
For a family, the stakes here are not linguistic. Alzheimer's Disease International's 2019 attitudes survey, completed by almost 70,000 people across 155 countries and analysed by the London School of Economics, found that 35 per cent of carers said they had hidden a relative's diagnosis, and that two thirds of people still believe dementia is a normal part of ageing. Hiding a diagnosis has consequences: the delayed appointment, the unclaimed benefit, the friend who stops calling because nobody told them what to expect. Whether the word is the cause of that silence or only its most convenient carrier is precisely what this Comment cannot settle. It puts the question on the table, in a journal, with clinicians' names attached, and that is not nothing.