The first Foreword for my first book…

cat mouseDr Shibley Rahman is the first person to have read the manuscript for my book, What the hell happened to my brain?, even before the publishers, and has written a Foreword for it, which I am proud to share with you today… Then you Shibley, your words mean a lot to me.

If I could find a photo of him to add I would, but I am still struggling to work out where things are on my new Mac computer!  We both love cats and Koalas, so I thought this was a gun image to add instead.

Foreword

First of all, I too would also like to identify Dr Richard Taylor as a man I like and respect. Richard is a remarkable person, living with a dementia, who I have found to be intensely supportive of the work of others, devoid of triviality, and nobody’s fool.

Kate Swaffer, prior to this book, had already made a lasting impact in the academic field of dementia. Few people do. Her construct of ‘Prescribed disengagement’ , through the analysis of “disAbilities”, provides a unique synthesis, and a fundamental resetting of the moral compass. Thanks to Kate’s work, in large part, the direction of policy now is beginning to point away from simply drugs and towards helping people to get on with their lives. As Kate says “Dementia is the only the only terminal illness I know of where people are told to go home and give up, rather than to fight for their lives.” This, I completely agree, is unacceptable.

But now onto the book. This book is exceptional.

Although this book most clearly deserves to have a very wide readership, I think it should be carefully read by every clinician in training in every jurisdiction. Quite frankly, nobody else could have written this book. The author herself has excelled in a Masters degree in dementia care, having found meaning in her life with a diagnosis of young onset dementia.

What distinguishes this book is the fact that Kate is incredibly well informed, and a personal determination shines through every word; and yet Kate writes with the beauty of poetry. The book is so well written, it actually does deserve the worn cliché that ‘I couldn’t put the book down’.

The narrative is way ahead of its time.

When Kate was diagnosed with dementia, the precise context was that the medical profession felt it could not do much. Such doctors typically earn their living through longitudinal follow up of ‘patients with dementia’ to chart accurately the progression of ‘deficits’ and referring to other services where necessary. But this is entirely to miss the point, I now feel.

The critical issue is actually to big up what a person can do, not what he or she cannot do. The medical profession is in a principle of responsibility in not belitting its patients to a list of problems to be dealt with urgently often on a last minute basis. All citizens, whatever their precise status, should be interested in promoting wellbeing of persons living with dementia; this is to uphold a sense of mutual solidarity, justice, fairness, and dignity.

In wider world policy terms, this is no longer a question of being ‘friendly’, though I appreciate the sincerity and genuineness of this policy plank globally. This is, rather, about upholding rights, including in equality or human rights. Whilst this book is written in a ‘dementia friendly’ style, I especially recommend this book to my colleagues in the health and care sectors. I certainly do not wish to undermine the terrific work being done in the search for symptomatic treatments, or possibly other medical interventions. But pumping resources into this endeavour should never be at the expense of the current generation of people who have received a diagnosis of a dementia. I suppose it’s reassuring to use slogans and phrases such as ‘keeping it real’ or ‘no decision about me without me’, but I think we should all be on guard about promoting division inadvertently in this arm of policy.

This book will be invaluable to anyone who wishes to learn about aspects of living with dementia. I know of no other source which matches the quality and breadth of writing as in the book, in a brilliant and unique way; including young onset dementia, employment, the consequences of a delayed diagnosis, feelings of guilt, driving. And yet the book does not paralyse any subject through academic analysis. I recommend to you her unique chapter on blogging, for example. Kate’s book, overall, therefore, takes the field of living well with dementia much further forward.

In fact, the book brings up topics that I really wish my academic colleagues had made much more progress on by now, such as tying up the grief and loss reactions to the effect of receiving a diagnosis of dementia. The book further broaches sensitive topics in a unique, incredible way so as not to make feel uncomfortable; such as personal reactions about dying, or fears about the future.

One of the unfortunate fault-lines in the literature has been to assume in an uncritical way that people living with dementia necessarily should have the same agendas as caregivers. One of my favourite parts of the book is Kate’s analysis of how carers speak out publicly about people with dementia. Again, this is a topic people have been frightened to talk about.

I feel Kate through this book will ultimately reach out to millions, whether they are living with dementia or not. A word I have often heard used about Kate is ‘inspirational’. In these days of hyperbole in the media, it is not uncommon for this word to be used, but in Kate’s case it is richly deserved. Kate acts a focus for acknowledgement for values and attitudes which are right about this world, in generosity and warmth of spirit; of being educated, and great fun to be with. I know Kate’s family means a lot to Kate, and I can only imagine how proud they must feel with this amazing book.

This book is highly original. I think it makes the weather on so many key topics, such as the abuse of language, or myths about dementia. Whilst it may make some people feel uncomfortable, including ‘experts’ and people in the media, they need not just to hear but to listen carefully. And the book somehow combines being timeless, placeless, and yet firmly relevant to us all, in the here and now, and clearly ahead of its time. But this inherent contradiction about the book does not particularly worry me, because of its sheer brilliance.

Sadly, I don’t think this book will ever be matched in quality on the subject of dementia – unless of course Kate ever decides to do a follow up.

I am honoured to know now Kate well as a close friend. She inspires me. She teaches me so much.

Dr Shibley Rahman

London

January 2015

29 thoughts on “The first Foreword for my first book…

  1. What lovely complements he is giving you all through his Forward!! It’s great to read Kate 🙂 Look forward to reading the book!!

  2. Congratulations to both of you, a wonderful foreword to what sounds like an amazing book. A lovely uncle-in-law has begun with dementia and it’s time I knew much more about it!

  3. What a wonderful forward from Shibley! Congratulations Kate! And yes, I think too that your book should be translated into Italian. God only knows how much we need somebody with your voice, competence, and talent here in Italy. I can’t hardly wait to read you on paper!!!

  4. What can I say Kate? A brilliant citation in Shibley’s foreword. I’m also looking forward with great anticipation to publication. 2014 has been a huge year for you and I guess that 2015 will be the same. I’ll embark on my next academic and learning journey this year as I hope to get my PhD research proposal accepted. Your astute, erudite and eloquent insights will illuminate my path.

    • Philip… I am delighted you have applied to do a PhD! Brilliant news, I know you will excel beyond even your own expectations. And thanks for your kind words, always happy to share, as you know. xx

  5. Hi again Kate. So good to read your blog today and the wonderfully affirmative citation from your friend. I can’t wait to read your book – when will it be published and released for sale? I ‘ditto’ what Leah has written above. Thankyou so much for sharing yourself with us.

  6. Excellent my friend…All the good and kind things he says about you are so true 🙂 You are remarkable and have done unmeasurable good for the world of Dementia and helping those affected by it stand their ground and gain more rights to make life more meaningful. I am so damn proud of you Kate!!! Be well and bless you…Much love…VK ❤

  7. OMG Kate – you must be glowing with such pride, and you deserve no less. You ARE the guru.

    I am so privileged to know you via this blog as I continue to be inspired, humbled and touched by you. Your perspective is the one I have wanted to hear throughout my entire career. Its truly what I needed to make sure and yes, validate, my own thoughts. You have allowed me to further enrich and improve upon my work. I shall continue to advocate the care of those incredibly precious people who live with dementia, but with the added insight that comes from yourself and your ability to touch us all with your honesty and incredible perseverance.

    You go girl!!!!!

    Love your work.xx

  8. Congrats Kate and thank you for writing this book. My father was diagnosed recently with Alzheimers and I have found your blog a comfort and also very informative and helpful for me. I imagine your book will be the same so I look forward to reading it. Do you have a release date yet? All the best.

The only thing missing in this global conversation is YOUR voice... Thank you.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s