Terry Pratchett once said that “the first step is to talk openly about dementia because it’s a fact, well enshrined in folklore, that if we are to kill the demon then first we have to say its name. Once we have recognised the demon, without secrecy or shame, we can find its weaknesses.”
Terry faced that demon fearlessly. Once upon a time, Alzheimer’s was a disease that didn’t get talked about. Thanks to Terry, this is no longer the case.
During the many times Terry supported Alzheimer’s Society, publicly and privately, I was struck by his passion, resilience and courage to fight and kill the demon of dementia. When thanked for his work, he’d simply smile and shake his head modestly, insisting it was nothing. Never dwelling on his own dementia, he used his voice to shout out for others when they could not.
Since his diagnosis in late 2007 to his death, his passion for making people aware of dementia fundamentally changed the way dementia is seen and understood. Terry had a rare form of dementia called Posterior Cortical Atrophy or PCA. It affected his vision and coordination, but not his determination to be the truest of champions for people with the condition.
In 2009 he made a poignant film that was broadcast on BBC2 called Terry Pratchett: Living with Alzheimer's, sharing with the world, and his millions of fans, his private struggle with the condition. This took great courage but Terry was a fearless advocate.
Terry Pratchett: A career in quotes
Terry Pratchett: A career in quotes
1/13 “Inside every sane person there’s a madman struggling to get out” –The Light Fantastic
Pratchett photographed in 1990
2/13 "We Pratchetts are a feisty bunch"
Pratchett with his daughter Rhianna at home in 2009. Rhianna is now a writer in her own right and has written the storylines to video games such as Tomb Raider and Overlord
3/13 "It occurred to me that at one point it was like I had two diseases - one was Alzheimer's, and the other was knowing I had Alzheimer's"
Terry Pratchett delivers a petition on behalf of the Alzheimer's Research Trust calling for an increase in government funding for dementia research in 2008
4/13 "Imagination, not intelligence, made us human"
Terry Pratchett with his double-row of six computer screens in 2009
5/13 “If you don’t turn your life into a story, you just become a part of someone else’s story”
Pratchett was awarded an OBE in 1998
6/13 “Sometimes glass glitters more than diamonds because it has more to prove” - The Truth
Terry Pratchett launches his 25th novel of the 'Discworld' series, 'The Truth' in 2000
7/13 “Time is a drug. Too much of it kills you”
In 2007, the year he announced he had Alzeihmer's
8/13 "You can't ask a fantasy writer not to want a knighthood"
Receiving his knighthood in 2009
AFP PHOTO/Ian Nicholson/POOL
9/13 "Life doesn't happen in chapters - at least, not regular ones"
Pratchett at home in 2009
10/13 “The trouble with having an open mind, of course, is that people will insist on coming along and trying to put things in it”
Pratchett at the world congress of the World Federation of the Right-to-Die Societies in Zurich, 2012
11/13 “Inside every sane person there’s a madman struggling to get out”
Attends the South Bank Sky Arts Awards in 2012
12/13 "Insanity is Catching"
Pratchett won the Bollinger Everyman Wodehouse Prize at the Telegraph Hay Festival, pictured with Snuff the pig in 2013
13/13 “People don't alter history any more than birds alter the sky, they just make brief patterns in it” - Mort
Campaigning for Dementia Friends in 2014
He was not afraid of shouting from the rooftops about the absurdity of how little funding dementia research receives, and fighting for good quality dementia care. He took on politicians making sure they do more to improve life for dementia patients and fund research into dementia drugs. He spoke out about the need for funding and research on many other numerous occasions, notably on Newsnight in December 2013, during the first ever G8 summit on dementia.
When the Alzheimer’s Society launched the Dementia Friends initiative to tackle stigma, Terry was quick to offer his support. Despite failing health, he graced our television screens last year with a host of other celebrities urging the general public to find out more about a condition which affects as many as 850,000 people in the UK.
Our deepest condolences go to his wife, Lyn, his daughter, Rhianna, and his friend and business manager, Rob Wilkins, who accompanied and supported Sir Terry on all his charitable work.
Terry helped to bring dementia out of the shadows and into the light.
Jeremy Hughes is Chief Executive of Alzheimer’s SocietyReuse content