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Sir Terry Pratchett – Dementia Blog, what’s the point of it all?

Sir Terry Pratchett

The internet is a dumping ground and finding words of any worth in the flotsam and jetsam can be a chore.

In spite of this, Alzheimer’s Research UK – a charity of which I’ve been patron since 2008 – believes more words in the form of a new dementia blog might tempt people away from cat videos long enough to read something of substance. Are they right?

If there is indeed an emerging sense – finally – that we’ve stopped pussy footing around dementia and can now bear to utter its name, we nevertheless find a cloud of unknowing persists. People read, watch and hear more about it than ever before. They know it’s out there. They know it will claim more of us as we continue to age. They fear it. Dementia vies with cancer in an unsavoury battle of the scariest, but it must be said that some lucky people will survive cancer. But I suspect many still don’t understand dementia or, at least, understand it only as an insidious memory loss. The fear, perhaps, is a fear of the unknown.

There isn’t one kind of dementia. There aren’t a dozen kinds. There are hundreds of thousands. Each person who lives with one of these diseases will be affected in uniquely destructive ways. I, for one, am the only person suffering from Terry Pratchett’s posterior cortical atrophy which, for some unknown reason, still leaves me able to write – with the help of my computer and friend – bestselling novels. There’s no clearly plotted pathway to the course of these diseases. Dementia attacks those facets which make us who we are, and it’s a deeply personal attack that defies prediction. And that’s the point. Every person with dementia has a unique story to tell, and this blog should tell as many as it can. Words need to be put down before they run dry… or run out.

Terry-Pratchett-Alzheimer's-Research-UK

If dementia is countless sad stories played out behind closed doors, then this corner of the internet is the peek behind the curtains. Sharing these stories will be an education for many readers and a catharsis to those who contribute to it, but, in the end, it won’t make people with dementia feel any better; only a new drug can do that. So I also expect this resource to become a clear commentary on progress towards a cure.

Technology and a trained and compassionate care system can help paper over the cracks, but, a decade since the last proclaimed development, science needs to deliver on its promises. There’s more money floating around the government for research, but barely enough to buy a middling premier league striker. This is the country’s leading dementia research charity, and it’s growing during tough times, but Cancer Research UK is 54 times larger. If we’re serious about this thing, and want to match the fanfare with the funding, then more money needs to be found down the back of David Cameron’s sofa.

The funding drum will continue to be beaten no doubt. In the meantime, donors to this charity and all of us as tax payers put faith in the scientists working their arcane magic with limited means. We need to know that they are beating the odds, and this should be the place to come to find out. Believe me; I, for one, will be looking over their shoulders and taking them to task. Come on, get on with it!

Terry Pratchett

Salisbury, UK

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27 Responses to Sir Terry Pratchett – Dementia Blog, what’s the point of it all?

  1. Maggie Williams 17 September 2013 at 5:18 pm #

    Sir Terry, very well said. My husband has PCA too. You have laid bare the reality of the lack of funding into dementia research. It is heartbreaking. Could we not ‘float’ a suggestion, whereby everyone who can and is willing, donates a nominal sum of say £1 each month to a new research fund? I would be head of the queue, but we would need to know that any monies donated got to the correct destination. If it’s done under Give as You Earn wouldn’t the government double match the donation?

    Best wishes
    Maggie Williams

    • Julie Dudley 18 September 2013 at 2:00 pm #

      Govt returns 25p for every pound donated under the Gift Aid scheme. And btw what a great idea!

      • Word Reet 13 November 2013 at 8:40 pm #

        I would definitely subscribe to something like this, as my mum (85) has just been diagnosed with Early Onset Anzheimer’s

  2. Charlotte 18 September 2013 at 6:06 am #

    What a refreshing and engaging uncensored intro to an important conversation. Amen to less money on football transfers and more money on dementia research. Going to put my money where my mouth is, now.

  3. Olivia Monteith 18 September 2013 at 12:08 pm #

    Thank you for not shying away from the public eye and bringing so much attention to dementia research as well as fighting for people to have the right to medical euthanasia. My grandfather has Alzheimer’s and in the last years of his life, he faded away into a stranger, till he seemed like the man I adored had already died, but his failing body lingered on for five more years, till he could no longer eat, speak, or even get out of bed. We were told that it can be genetic, so now my mother and I feel a little bit of fear every time something slips our minds, even though my grandfather didn’t have early onset Alzheimer’s, and it’s very normal for busy people to forget things. We know we are being paranoid, but it is like a wolf that stalks us.

    • Jon Banerjee 19 September 2013 at 2:42 pm #

      What happened to your grandfather describes exactly what happened to my father. It may be genetic but my grandparents or their parents did not suffer from it. But like you I also live in a fear. Will it happen to me will I be in that vegetative state, locked in my own world (!!) not recognising my near and dear ones and inflicting pain on them.

  4. Darcy Posein 18 September 2013 at 12:26 pm #

    Sir Terry, my father is struggling with dementia. We are in Canada and it is about the same here. Hockey players make millions of dollars per year and very little goes to Alzheimer’s research. It is very comforting to me that you have started this blog. I will be viewing it everyday to see what is happening with yourself and the research. Thank you once again.
    Darcy Posein

  5. Kyle 'Ky' Hanna 18 September 2013 at 1:11 pm #

    Sir Terry, thank you for all that you’ve done to raise awareness for these diseases.

  6. Vivien Mershon 18 September 2013 at 7:13 pm #

    Was at the Warwickshire County Council Living Well with Dementia Conference yesterday. Amazing day with incredible speakers – someone with dementia and someone who care for her husband who had dementia. I have a vested interest as my mother has what we believe is the early stage of a form of dementia – waiting for an assessment but I already know it may take years before this is confirmed despite aims to increase diagnosis rates. Learned so much which have changed my perspective of the disease and mum’s behaviours which will hopefully help us better to help her live well for as long as possible, and accept that although she will change to someone we don’t know as Mum, it is not intentional and that we need to see the person not the disease. It is however – as the lady said yesterday – a double bereavement. You lose your loved one and then at some point you have to support them on their final journey, and put your life back together again. So glad that this blog exists so we can share thoughts and hopefully help society become friendly.

  7. brian orchard 18 September 2013 at 7:18 pm #

    All the best with leading this to more prominence, who amongst us does not consider this a serious threat to our enjoyment of later life?

  8. Kang the Unbalanced 19 September 2013 at 6:26 pm #

    Warmest regards, Sir Terry. I can’t begin to express how heartening it is that you are still writing. I’m passing along a link to this blog to my family, along with a hearty recommendation to sit down with Nana and watch Hogfather.

  9. Shazzer6 21 September 2013 at 4:22 pm #

    It is great to have Sir Terry Pratchett campaigning for more funding for research into this terrible disease.
    Research is definitely the answer to finding hopefully one day a cure or at best dramatically slowing down this illness.
    Both my parents were diagnosed with Alzheimer’s disease in there late 60`s and it has been awfully hard to bear.
    My mum’s deterioration was more rapid than my dad’s, so yes it is different for each sufferer.
    As a family we also worry about the gene factor, especially with both parents suffering, what’s the odds?
    I work with older adults and witness many of them also being diagnosed with a form of dementia.
    Come on the Government more needs to BEEN done to tackle this disease that are destroying people’s life’s!!
    Keep up the good work Terry you are a true hero to share your personal life in the public eye to highlight this disease.

  10. Julia Johnson 22 September 2013 at 10:51 pm #

    Thank heavens you can still write – we need people like you to bang the drum. As Comms Manager for Guild Care, a charity in Worthing, helping people with dementia and their carers as well as supporting many others in old age or difficulty, dementia is like a creeping vine. As we celebrate our 80th Anniversary, we are planning a new dementia home and dementia wellbeing centre but we have a huge amount to raise. In the meantime – we continue to support people with dementia and their families. We have recently put up a video of our ‘Time Out for Carers’ service and their families – http://www.youtube.com/guildcare which I think many will enjoy.

    Keep up the good work and yes, lets find a way to increase research funds!

  11. Hayley Mac 25 September 2013 at 4:26 am #

    I agree, well said. We are filmmakers from Australia that are passionate about telling stories and also in helping create awareness about Dementia to younger people. We are currently in the process of making a short film to help reach wider audiences. It would be great if you could all have a look at the project we’re working on: http://www.growingyoungfilm.com. I beleive it would be of great interest to you.

  12. Clare Turner 25 September 2013 at 4:30 pm #

    Has anyone currently in the field made the connection between A D & Lyme Disease, & the potential of supplements as well as drugs? When autopsies have been done on Alzheimer brains, every one had the Borrelia spirochetes in it.

    Sorry I can’t be more specific or scientific. My brain has been badly affected due to Late Stage Lyme Disease, but I have improved it’s function to some extent thanks to supplements, as advised by Specialists & Complimentary Therapists.

    The reason it has developed into Late StageLyme is because my illness was incorrectly diagnosed for 10 years as ME then CFS.

    It is difficult to find correct info about it because there is so much misinformation about Lyme Disease from the various conflicted interests (including insurance & military) of those in powerful positions.

    • ARUK Editor 26 September 2013 at 2:54 pm #

      This
      has not been a widely studied area, although there is research ongoing into
      whether bacterial infections may contribute to the development of Alzheimer’s.
      We are currently funding a study at the University of Southampton to look at
      whether chronic bacterial infections could contribute to the disease and how.

      You can read more about this study at http://www.alzheimersresearchuk.org/news-detail/10617/Can-infections-make-Alzheimers-worse/

      • Clare Turner 26 September 2013 at 3:30 pm #

        Thank you for your reply. My scientist friends will be interested in this.
        Best regards,

        Clare
        —– Original Message —–
        From: Disqus
        To: clare.turner@zen.co.uk
        Sent: Thursday, September 26, 2013 3:54 PM
        Subject: Re: New comment posted on Sir Terry Pratchett – Dementia Blog, what’s the point of it all?

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        A new comment was posted on Alzheimer’s Research UK Blog

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        ARUK Editor
        This
        has not been a widely studied area, although there is research ongoing into whether bacterial infections may contribute to the development of Alzheimer’s. We are currently funding a study at the University of Southampton to look at whether chronic bacterial infections could contribute to the disease and how.
        You can read more about this study at http://www.alzheimersresearchu
        10:54 a.m., Thursday Sept. 26

        Reply to ARUK Editor

        ARUK Editor’s comment is in reply to Clare Turner:

        Has anyone currently in the field made the connection between A D & Lyme Disease, & the potential of supplements as well as drugs? When autopsies have …
        Read more

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  13. Lesley Postle 12 October 2013 at 11:13 pm #

    Sir Terry, you are an inspiration, not just for all the work you do tirelessly for Alzheimer’s research and awareness, but for your amazing positive attitude. We used something you said in your moving programme where you visited the orangutangs in Borneo in the front of our new book “A Healing Hug for Alzheimer’s Caregivers”, (by Elizabeth Postle – my mother). You said:

    “We mustn’t give up hope. After all, isn’t that what makes us human?”

    And it is something for all Alzheimer’s sufferers and their families to live by.

    Thank you.

    PS you can find out about the book at: http://www.griefandsympathy.com/alzheimers-caregivers-book.html

  14. D L 17 October 2013 at 3:07 pm #

    Just finished Shenk’s Biography of Alzheimer’s, an eye-opener to issues of funding in scientific research. Also an interesting section about Lyme’s, Clare. A wonderful carer lent me that and other books which are very helpful and inspiring, particularly those written by people living with cognitive impairment (Christine Bryden for example. )

  15. Jeff Nicholson 10 November 2013 at 5:16 pm #

    There is growing evidence that dementia can be caused by a high carb diet and a switch to a high fat diet has a beneficial effect on the brain. The brain may prefer fat as an energy source and requires cholesterol to stay healthy. Switching to a Low Carb/High Fat diet is something we can all do for free. Why not try it for one month and see how you feel.

    regards

    Jeff

    Canada

    • ARUK Editor
      ARUK Editor 11 November 2013 at 8:48 am #

      Current
      evidence suggests that a healthy balanced diet could help to keep the brain
      healthy as we get older, but currently there is no firm evidence that one
      particular diet could be more beneficial than another. If you want to read more
      about how to lower your risk of dementia, visit the Risk
      Factors and Prevention page of our website.

      • Jeff Nicholson 18 November 2013 at 5:27 pm #

        According to the Journal of Alzheimer Disease people on high carb diets have a four fold increase in the risk of cognative impairment.

        http://www.j-alz.com/node/141

        And this is from The European Journal of Clinical Nutrition
        Conclusions

        Ketogenic diets are commonly considered to be a useful tool for weight control and many studies suggest that they could be more efficient than low-fat diets, although there is not concordance in the literature about their absolute effectiveness and even some doubts raised about safety. But there is a ‘hidden face’ of the ketogenic diet: its broader therapeutic action. There are new and exciting scenarios about the use of ketogenic diets, as discussed in this review, in cancer, T2D, PCOS, cardiovascular and neurological diseases. Further studies are warranted to investigate more in detail the potential therapeutic mechanisms, its effectiveness and safety, and we would invite all researchers to face this challenge without prejudice.

        http://www.nature.com/ejcn/journal/v67/n8/full/ejcn2013116a.html
        I only ask that we keep our minds open.

  16. Nadia Nciri 22 January 2014 at 11:29 am #

    Dear Mr Pratchett, dear all,

    My husband, C.Elliott, has been
    diagnosed with Younger onset Alzheimer 5 years ago (he is now 55) and of course
    is losing most of his abilities. We leave in Brussels and I am desperately
    looking for families with the same situation. I would like to be in contact for
    my daughter who is only 12 and is in urgent need to read other children’ stories
    going through the same situation. Here is the letter to her dad she wrote when she was only 10.

    Dearest Dad,

    At first I was having trouble understanding that you would never be the same. I couldn’t understand that you wouldn’t be the same father that you were before. That exciting, a bit show-off, endearing, funky..who went all over the world.. the dad I admired so much. I do still admire you but right now it is about how you fight against your illness and how each day you wake up with more and more sadness consuming you. I think that secretly, I have never been so proud of you. There have been moments where I was angry at you but that passes. What pains me the most,though, is how you might not be able to recognise me and each time I think of it I feel like there is a bullet passing through my brain sending thousands and thousands of little Kenza’s (her name) screaming.. But what I am writing it is to say that I love you……

  17. Keira Jones 14 May 2014 at 3:44 pm #

    Hi Terry,

    I am a caregiver and just came across your blog.

    I have been a young(ish!) carer for my mother-in-law, who suffers from dementia, for the last three years now.

    I am in the process of creating a new poetry site primarily aimed at carers, but also people with dementia as well – http://dementiapoetry.com.

    The blog is an honest account of my experience of caring over the last few years in poems – some silly, some exasperated, some happy, some sad – of my last three years caring for my mother-in-law, who suffers from Alzheimer’s disease, and is aimed at helping to support other caregivers in a similar position.

    Hope people might find it of use…

    DG x

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