Dr 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.
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