Today is a very special day. I am very honoured to be invited to the private launch event to celebrate the publication of Dr. Shibley Rahman’s wonderful book: ‘Living Well with Dementia’. I have followed the progress of Shibley’s book with huge interest, including pre-viewing early proofs. I have wondered at the sheer hard work of getting it right, including keeping up with all the amazing innovative work helping people living with dementia to have a good quality of life. The book was written against a shifting backdrop. Innovation does not stand still and the passion of #dementiachallengers, a key feature of the book, cannot readily be pinned down. By the next week, something new has happened!
I will never forget the excitement of one bright Sunday afternoon in London last August. Kate Swaffer was here on a brief visit from Australia and we were all looking forward to meeting up as ‘imaginary friends’ but first Shibley and I met up as he had always been a huge champion of Whose Shoes? and was interested to know more. I don’t know which of us was more excited when we realised how closely the ‘Path to persoanalisation’ in Whose Shoes/ mapped to the chapters and key themes of Shibley’s book. Luckily we were just in time to agree to add this as a special plate in the book.
Last Sunday I was very proud to show the finished result to my 91 year old Mum, a.k.a @Gills_Mum.
I thought we were going to keep it ‘under wraps’ but Shibley had other ideas:
Speaking personally, I am someone who shouldn’t be alive.
To get “inside my shoes” would in fact be impossible, as the most horrific day in my life was waking up in pitch darkness on the top floor of the Royal Free Hospital in Hampstead, London, after a six week coma due to bacterial meningitis. I strongly believe that each person’s experiences of health and illness are unique, but anything can happen to anyone at any time. Often, the most challenging of events happen to the nicest of people too. I’m not going to indulge in a paralysis through analysis, but, suffice to say, I come from a rather unusual standpoint.
I would never dream of “putting myself in the shoes of” people actually living with dementia. As the old adage goes, once you’ve met one person living with dementia, you have – well – met one person living with dementia. Views vary on all sorts of topics, for example the application of trackers for people with dementia at risk of wandering. I can’t imagine what it is like to see your father or mother receive a diagnosis of dementia, become an occupant of a care home, or what it feels like to visit your loved one there. I can’t imagine what it’s like to be the parents of someone who has received a diagnosis of dementia in their 20s, but I have met such people.
I certainly wouldn’t be able to ‘walk a mile in my shoes’, even several years after recovering from my coma. Indeed, there was a time shortly after my coma when I could only walk with the help of a “rollator”. And I could move around with my wheelchair – but how people view (or ignore you when you’re waiting for a cab) you in a wheelchair is a real eye-opener. To begin with, I literally had no voice. The reason for this is because I had just had a tracheostomy, on the Intensive Care Unit, and I could not speak. I then spent weeks as an inpatient on the neurorehabilitation ward of the National Hospital for Neurology and Neurosurgery, Queen Square, London. This is a world centre for neurological diseases. In fact, I am honoured to have been Prof Martin Rossor’s house physician from more than a decade ago. His team looked after wonderful people with the most complicated reasons for their dementia.
While I was receiving my neurorehabilitation, I literally learnt how to walk again with the help of physiotherapy input, and how to eat and speak again with the help of speech and language input, and how to look after myself with the help of occupational therapy input. Becoming a patient was probably the best thing that happened to me, in understanding how the medical profession actually is perceived by the people who need the NHS.
I learnt much more about medicine there than I had ever learnt
before receiving one of the top Firsts in the subject
in Cambridge in 1996.
Sometimes it’s felt as not only have my views on dementia not been sought after. Regrettably, it sometimes feels as if they’ve been actively blocked. That’s why it’s been so rewarding to write this particular book. I don’t believe anyone has any particular “authority” on dementia, apart from the persons who are living with dementia and the people who care for them. Nobody has all “the right answers” in research. Indeed, some medics and their supporters should show some humility in finally admitting that their costly drugs for symptoms of dementia have modest effects, if that, for the majority of patients. Certain people with undisclosed agendas have too long biased the discussion of this vital area, in a way that has simply been morally unacceptable.
But studying neuroscience for my finals in 1995-6 made my decision to go into research in dementia at Cambridge (1997-2000) very easy. I think possibly five people, apart from myself, read my PhD thesis from cover to cover in 2001 (or later). One of these is Prof. John Hodges, one of the world experts in frontotemporal dementia, and who kindly wrote one of the Forewords to my book. I hope that people currently researching research now will not just be attracted by the drive for a cure which ‘stops dementia in it tracks’, but also be interested in evaluating critically the ways in which the wellbeing of persons with dementia – and their carers – might be improved.
I actually now live with various long term conditions, physical disability being one of them. However, some London cabbies think that I have in fact written an autobiography with the title ‘Living with dementia’.
The most exciting thing about my book is that I’m taking this complex narrative to people who have never heard of it. This sadly includes Consultants in general and geriatric medicine and neurology. They remain focused on the “medical model”, who might never have had any reason to know about personhood, but I’m still hopeful for a change in culture from the NHS here as we tiptoe steadily towards “whole person care”. For many of them, life begins and ends at the prescription pad.
I spent more time writing my book than in fact I did writing my own thesis on dementia at the University of Cambridge, examined in 2001. The book has thankfully been very warmly received (and a full description of it is here.) I am not a journalist, but I am a keen blogger and tweeter. I rarely write for a specialist audience any more, though my paper on what actually causes frontal dementia has been very widely cited since it was first published by the Brain journal in 1999. The paper’s even mentioned in the current Oxford Textbook of Medicine. The problem, though, with academic writings is that it’s a very small world, and your work tends to be peer-reviewed by people known to you. But I hope I’ve fulfilled my public duty in bringing the exciting developments in living well with dementia to the coffee tables of the UK rather than specialist libraries. I’ll let interested persons be the best judge of that.
One of the best things about writing my book, completely unfunded, is that I haven’t been tied down by any vested interests. Also, I’ve met some amazing people: amazing carers, amazing people who work in healthy living clubs, amazing people living with dementia, amazing ethicists, amazing academics, amazing innovators, amazing family members.
I am hoping that I’ve described clearly contemporaneous issues about living well with dementia; giving members of the general public a working idea of what dementia is, or what wellbeing is. I also wanted to cover why personhood is important, and how the environment might best be optimised for a person living with dementia. I had the help of several Professors in this area who kindly sent me their recent papers. They were all down-to-earth people, and a sheer joy to engage with. So the book really is a cutting-edge synthesis of the field, and unique. And I hope I have cited evidence in a way such that my reader is not bogged down in a morass of references. My entire outlook on life embraces equality and inclusivity, and I hope very much this is particularly evident in my chapter on innovations and design of the environment.
I feel the “Prime Minister’s Dementia Challenge” has been wonderful for ‘putting dementia on the map’. This Challenge, undoubtedly, has seen a crop of snake-oil salesmen. This is incredibly sad for people like me who’ve been close to dementia research for the last fifteen years. However, I feel strongly that the pitch for monies to fund research for the pharmaceutical industry should NOT be as if the struggles of the millions of unpaid family caregivers and low-paid carers do not exist. Without these carers the NHS would simply collapse. But with this ‘zero sum gain’ approach, clearly not everyone has been a winner. For example, somebody I know, who has worked extremely hard for dementia advocacy, had no job to go to at the end of last year. I have known also some friends of mine to lose out in commissioning contracts to some of the well resourced ‘big players’, and they’re the loveliest of people. Acquiring a sudden interest in dementia of course suits certain organisations who wholly embrace the ‘tick box’ culture, but I’m very proud to say none of them will be at my particular book launch.
I am honoured that Gill easily gave me permission to discuss Whose Shoes? in my chapter on personhood and the enormous legacy of the late great Prof Tom Kitwood. I can’t stand people being judgmental, and jumping to assumptions, and I think Whose Shoes? is a great way to force people in the health and social care sector to question their assumptions. This is why I especially loved Gill’s unique innovation Whose Shoes?. I do happen to think it’s a brilliant example of innovation, having geekily studied innovation management for my own MBA. I feel happy that Gill and other friends of mine will share in my happiness and success in bringing this conversation on wellbeing in dementia into the public area.
My book launch is in Camden, on Saturday 15th February 2014. Many of us are going out for a pizza afterwards. For me, they truly are members of my extended family. Hopefully, you’ll be reading this blogpost of mine around then too.
Please do let me know what you think about my book.
Well, I think it is going to make a huge contribution to reducing stigma. It is such a readable book that it will be read in everyday locations… on the train, or in the local café, or perhaps even at the hairdresser’s…