Dear Editor,

I am Dr James McKillop, DUniv., MBE

I am not a medical doctor, it was an honorary award.  I was at a dementia meeting on the 6 June 2001, and heard the unbelievable way, people with dementia were referred to.  I was taken aback, horrified, and aghast.   Even the government minister, used the revolting term “Dementia Sufferers”.   I heard other ministers, in later years, use these terms in public.

I still have the video as evidence and may soon have a DVD transferred from it.

So, on the 10 June 2001, I wrote a personal article, about the demeaning terms used.

Since then, I have written at some point, to every UK newspaper paper and magazine, that used terms such as “Sufferer”, “Dementia Sufferer”, “Suffering from Dementia”, “Afflicted”, “Diseased”, “Deranged” and “Demented” (a completely separate condition, if only they even looked at any dictionary) or worse.  I read and heard other offensive, yes, offensive terms, but have forgotten them, which is just as well, or you might regurgitate your last meal.

I never received one single reply in all those years, not even an acknowledgement.

I have written to you in the past, and like the others, was totally ignored.

This continued until about a month ago, I did receive an apology from a national UK newspaper, (it was a Scottish paper, the Glasgow Herald I think).  I think it was your paper.


I have spoken at Alzheimer Europe Conferences, the Scottish Government and anyone whose ear I could catch.  So now you have Alzheimer Europe, Alzheimer Society, Alzheimer Scotland, the Governments and Local Authorities, ceasing using, these humiliating references.  I think I paved the path, for others to object too.  To stand up for what is right.

But I still read these horrible names/descriptions in ‘papers, usually on a weekly basis.  At Covid 19, I stopped reading newspapers, unless I pick up one, which has been discarded.

I know people who have given up their jobs/career/education, and devoted their life, to looking after their parent(s).   They have lost their income, a work’s pension, a social life with friends, maybe have had marriage problems and gained a 24-hour stressful position.   No wages, no holidays, no respite (for many), no union to fight for some basic rights, and an uncaring UK Government, who get a sound sleep at night.

How do they feel, when their parent or loved one is described as “suffering”?  And worse, do their friends maybe believe this tripe?  It is in the paper after all.

I wrote to the IPSO, and received a reply, which was most unhelpful.  Caesar washing his hands, comes to mind.   They said newspapers may not edit direct quotes from readers.  I wonder if they printed letters which said something about “niggers” or suchlike?   Do they print or reject the letter, as inflammatory?   They should not print anything, which the ordinary person will use unwittingly, thinking if the newspaper says so, it must be gospel, as I, to my shame, once did. ERGO, lovely, thoughtful, caring people, do use these terms as de rigour.  If only they realized it wounds, the salt of the earth.

I once did a Sunday newspaper interview, which was excellent, but I specified that any of the above vile statements should not be used, and she promised.  I was livid when the article came out.  It was headed “dementia sufferer…”  I phoned her to complain, and she said she did what she promised, but her editor overruled her.

I once did a TV interview, after I insisted that, I was not called a dementia sufferer.  When the interview aired, his first words were, you guessed it, “dementia sufferer.”

Your article has the heading   “…dementia sufferers”, yet you publicly claim to be “dementia friendly.”

Need I say more?

Dr James McKillop, DUniv., MBE, February 2020.