Getting out and about, continuing with hobbies and socialising with friends are all important factors in helping people stave off the isolation that can so easily follow a diagnosis of dementia. So its great to hear that Rockin' Robin, Swindon Town's much loved mascot has taken the lead in helping the local football club do its bit to become a dementia-friendly place to visit.
Rockin' Robin is now officially a Dementia Friend, after an 8 strong group from Swindon Town Football in the Community Trust, took part in dementia awareness training delivered by the Alzheimer's Society.
Junior Development Officer from the club, James Sims, 21, said: “I really enjoyed it and picked up some useful tips on how to help put people who are living with dementia more at ease and make adjustments so they can keep enjoying football, both as a player and supporter. I didn’t realise that dementia isn’t just about losing your memory, so this was a real eye opener.”
Becoming a Dementia Friend, a national initiative by the Alzheimer’s Society, gives people a little bit of information to help those living with dementia feel valued and included in their community.
There are already around 3,500 Dementia Friends in the Swindon area, including more than 150 council staff and councillors, and it is hoped this number will continue to grow, as more people want to get clued up.
Dementia is a disease of the brain, which affects the way people think, speak and do things. It affects people’s moods and motivations, particularly if the disease affects the part of the brain that controls emotions. Although there is no cure, there is medication and also lots of things people can do to reduce the impact and speed of its severity.
Swindon residents can find out more about dementia and ways of coping with the condition at their local library, via The Reading Well Books on Prescription scheme. The 25 titles have been recommended by health experts and people with experience of dementia.
Councillor Brian Ford,Cabinet Member for Adults’ Health and Social Care, said: “I’m delighted that Swindon Town Football in the Community Trust coaches and Rockin’ Robin have joined the scores of people in Swindon who are Dementia Friends. The more we’re all aware of and understand dementia, as individuals, businesses and part of the community, the greater support and empathy we can bring to those affected as well as their family and friends.”
Terry Pratchett was simply not prepared to just give up when he was diagnosed with Alzheimer's Disease in 2007. For the 7 years until his death aged just 66 in 2015, he worked relentlessly to raise awareness and understanding about dementia in all its forms, campaign and raise funds for the Alzheimer's Society and, inspiringly, write a further 7 novels, as well as start to record his own life story.
But behind this determination to keep going was a deep seated anger towards his illness which is revealed in a docudrama to be aired on BBC2 on 11th February.
Terry Pratchett : Back in Black, uses the notes from his unfinished autobiography to reveal his descent into what he described as "the haze of Alzheimer’s” and explore the childhood traumas that spurred him on to become one of Britain's most prolific and well loved authors.
The programme includes footage of Pratchett shortly before his death, and features an appearance from Rob Wilkins, the author's long-term assistant and collaborator on his autobiography.
Pratchett's autobiography was the last thing he worked on. Sadly it remains unfinished.
Photo: Alan Weller for The TImes
In a report for The Times, David Sanderson writes...
In the programme, Rob Wilkins, who was collaborating on the unfinished autobiography, recalled the day in autumn 2007 when they both realised that ...“something strange had happened”.
He said that Pratchett had come into his office saying, “The S on my keyboard has gone . . . Come on, what have you done with it?”
Wilkins reveals that towards the end of his life Pratchett became increasingly angered by his disease. “He could see how it was affecting him, how it was tripping him up and I knew we were up against it for time. We had to get the words down and with that white heat, with that white anger driving him to write seven whole novels through the haze of Alzheimer’s.”
It was late in 2014 that Pratchett realised that his writing days were over.
“We had had a good day working on the biography and he said to me, ‘Rob, Terry Pratchett is dead.’ Completely out of the blue. I said, “Terry look at the words you have written today. It is fantastic." And he said, ‘No, no, Terry Pratchett is dead.’”
The author, whose series of Discworld novels sold more than 70 million copies and made him one of Britain’s most successful authors, died in March 2015, aged 66.
In the BBC2 programme, Terry Pratchett: Back in Black, which stars Paul Kaye in the title role, Pratchett also sheds light on his “humble childhood” and why he became a writer.
The son of a mechanic and a secretary he was inspired by The Wind in the Willows and got a job in his local library which he said was when he “was probably at my happiest”.
He was bullied at school and had a “mouthful of speech impediments that left me with a voice that sounds like David Bellamy with his hand caught inside an electric fire. But it was not the kids that really got to me, it was the crushing of my boyhood dreams by someone 3ft taller”.
Pratchett says that Bill Tame, the headmaster of Holtspur School in Beaconsfield, Buckinghamshire, took a “rather vicious dislike to me” and thought that “he could tell how successful you were going to be in later life by how well you could read or write at the age of six”.
Pratchett was more interested in “climbing the desks than working at them”.
His novels, set in a world held up by four elephants balanced on the back of a turtle, were dismissed by critics despite their popularity with readers. In the programme Pratchett says that the “feeling of somehow being inferior” created from his school experiences and literary criticisms was “hard to shake off”.
This anger however, had carried him “quite a long way”. he explained. Of his knighthood in the 2009 new year honours, he added: “Not bad for a boy who was told that he would never amount to anything.”
Pratchett made no secret of his diagnosis and campaigned tirelessly for The Alzheimer's Society.
Pratchett's own words on living with Alzheimer's ....
On his Alzheimer’s, Pratchett wrote:
“On the first day of my journalistic career I saw my first corpse – some unfortunate chap fell down a hole in a farm and drowned in pig shit. All I can say is that, compared with his horrific demise, Alzheimer’s is a walk in the park. Except with Alzheimer’s my park keeps changing. The trees get up and walk over there, the benches go missing and the paths seem to be unwinding into particularly vindictive serpents."
“Imagine you are in a very, very, slow-motion car crash, nothing much seems to be happening at all, there might be the odd banging noise possibly, a little crunching sound here and there, a screw might pop out and spin across the dashboard as if it was in Apollo 13. But the radio is blasting rock’n’roll, the heaters are on and it doesn’t seem all that bad, except for the certain knowledge that at some point your head is going to go smashing through that windscreen.”
“I always dreamt that when I died I would be sat in a deckchair with a glass of brandy listening to Thomas Tallis on the iPod. But I had Alzheimer’s, so I forgot all about that.”