Terry Pratchett brought dementia out of the shadows
Terry Pratchett brought dementia out of the shadows – we owe it to him to find a cure
SIR Terry Pratchett approached his own diagnosis of dementia by saying: “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.”
His initial reaction, in common with many of the 850,000 people living with dementia in the UK today, was anger and rage.
Sir Terry, who passed away last week aged 66, was never going to take his diagnosis in 2007 quietly. He regarded finding he had a form of Alzheimer’s as an insult and decided to do his best to marshal any kind of forces he could against “this wretched disease... that slips you away a little bit at a time and lets you watch it happen”.
He had a rare form of dementia called posterior cortical atrophy, or PCA. It particularly affected his vision and coordination.
Unperturbed, the prolific Discworld author continued to write bestselling novels, travelling the globe and entertaining his millions of fans with his work. He enjoyed his life and country pursuits at his idyllic home in rural Wiltshire with his family and friends.
Sir Terry also channelled his energy into his passion for making people aware of dementia.
He fundamentally changed the way it is seen and understood. He used his voice and time making a difference to those living with dementia now and in the future.
When his condition was first diagnosed, he said that he wanted to tell everyone.
He didn’t see this as a brave decision. It simply never occurred to Sir Terry not to talk openly about it as he came to terms with his condition while coping with a busy day job as the UK’s top fantasy writer.
It is a physical disease, not some mystic curse. Therefore it will fall to a physical cure.
In 2009 he made a poignant film, broadcast on BBC2, called Terry Pratchett: Living With Alzheimer’s, in which he shared with the world his struggle with the condition.
From lending his name and voice to Alzheimer’s Society campaigns to increase funding for research and improve the quality of dementia care in hospitals and care homes, Sir Terry took centre stage at countless conferences, spoke out in media interviews and demanded action from world leaders to stick by their promises to ultimately defeat dementia.
From Newsnight to the UK-hosted G8 Summit on Dementia in 2013, he waged a war, so merciless was his onslaught.
He said: “I believe that the D-day battle on Alzheimer’s will be engaged quite shortly and a lot of things I’ve heard from experts in the field, not always formally, strengthen that belief. It is a physical disease, not some mystic curse. Therefore it will fall to a physical cure.”
His determination to bring dementia out of the shadows, kicking and screaming if need be, was infectious and encouraged many others newly diagnosed to do the same.
He undoubtedly empowered those who previously felt stigmatised to speak out and seek help.
Alzheimer’s Society ambassador Graham Browne, aged 58, who lives with the condition, recalls the impact Sir Terry made on him.
“We always had a laugh and there were serious times but through it all we had the same goals.”
Last year, Sir Terry took part in a short film with other celebrities to promote our Dementia Friends initiative.
The programme is the biggest social action movement to change perceptions of dementia by educating people of all ages and all walks of life about the little things they can do to support people with the condition.
With the quick wit and keen sense of humour intrinsic to his writing, his quote for the campaign was: “It’s possible to live well with dementia and write bestsellers ‘like wot I do’.”
Sir Terry was featured in a national TV advert along with a host of celebrities who sang along to the Beatles classic With A Little Help From My Friends, his grey beard and black hat instantly recognisable in the line-up.
Last month, we celebrated the fact that one million people have become Dementia Friends and more are joining every day.
Sir Terry played a big part in this achievement. He was the truest of champions for people with the condition.
When I thanked him for his work, he would simply smile and shake his head modestly, insisting it was nothing, never dwelling on his own dementia.
An estimated 60,000 deaths a year are directly attributable to dementia.
Sir Terry believed that now is the time to kill the demon before it grows. We owe it to him, those living with dementia today and those who will develop the disease, to increase awareness and raise more funds for vitally needed research into prevention, care and cure.
Many people have over the years worked hard to bring dementia out of the shadows, but like myself and others, we were not well known and therefore did not have the impact that Sir Terry had. But it must be remembered that there are many dementia charities working hard to raise awareness of this illness and drag it out from its grim past. Its not always about one large charity or another. Even small charities are doing their bit, and in many cases are more hands on than the larger charities, because they work directly with those who have the illness. It does not always need well know people like TV presenters etc, because as I have been told on many occassions, it works much better coming directly from those who have the illness. Its up to us all to do our bit and help those following in the future
Dementia and Eyesight problems I noticed some time ago, that my eyesight was giving me
problems when trying to read and concentrate on things like my blog, but when I
got my eyes tested I was told there is nothing wrong.
I know that my brain fluctuates quite regularly during the
day, through my Lewy Body Dementia, and I go from being active to not being able
to work things out, so I am now wondering whether this has some effect on my
eyesight as well as this also fluctuates, and after a while it becomes annoying. I sometimes get blurred vision and other times I see double.
I had double vision problems many years ago and it was corrected, but that was
before the Lewy Body dementia started.
I confess that I am starting to wonder if the dementia is
behind this, especially as it’s intermittent and not there all of the time. I
try to keep myself active but when this starts it causes upset as I cannot do
the things I want to do, or cannot see properly to concentrate.
New international guidelines to identify dementia with Lewy bodies
Published on: 8 June 2017
From Newcastle University
New guidelines have been published on the clinical and physical indicators to help ensure patients with dementia with Lewy bodies get an accurate diagnosis and the best care possible.
Professor Ian McKeith
Our guidelines now distinguish clearly between clinical features and diagnostic biomarkers, and give guidance about the best methods to establish and interpret these
Professor Ian McKeith
The death of Hollywood actor Robin Williams in 2014 threw the condition into the spotlight as it was identified he struggled with the illness.
Now scientists at Newcastle University have led an international team of experts to produce new recommendations to help diagnose the disease more accurately and improve management of the complex disorder.
According to research published online today and in the July 4, 2017, issue of Neurology®, the medical journal of the American Academy of…
I had never realised until recently just how much a chest infection changes a person with a neurological illness like dementia.
I had a bad one three weeks ago and realised that I was going up the wall, and was doing and saying things that hurt my wife, or at least I did after I did it.
I honestly do not know how this happens but it is hurtful to everyone around, at the time, as we do things which are totally out of character.
I have been diagnosed as having another yesterday, so that must be about the sixth one this year, and its getting me down.
I thought I was alright in the morning apart from being chesty, having a horrendous headache and coughing up loads of rubbish. We then we went out shopping where I went dizzy and ended up hanging on to the shop shelves for security
After a while my wife rang the doctors to get an appointment before they closed for the weekend.
But these people seem to have vastly different ideas, each time you see the doctor that is in the clinic when we …