Recent personal experience has allowed me to witness excellent acute hospital care. But I have also witnessed some examples of how clearly hospitals are potentially unpleasant environments for patients who happen to be living with dementia, and also their closest who accompany for them.
For this reason, I’d like to write a short book on dementia for junior doctors. I intend to publish the book with UCL Press, which will help to ensure high standards in copyediting and other production. I am mindful that hospitals are not the only venue of service provision, training or research (for example) for dementia, and the book should hopefully be of use to junior doctors not in employment, in primary care, in hospices, mental health settings, care homes or elsewhere. I am also, however, mindful of my college (Royal College of Physicians) wishing to train junior doctors able to provide the highest quality in dementia care if they need to.
I don’t wish to write a book focused to help them pass their higher professional exams. I have actually done this for the MRCP as it happens. But I would like to write a book which would be useful as they go about their work on the wards.
The book would be not for profit – but rather be a freely available pdf a valuable online. I was part of a generation which did not have to pay for his university education. Things are totally different now where a medical training can leave people in debt for years.
I am more concerned about publishing a book which is of practical use to patients with dementia, their friends, families and carers (there might be overlap in this). I want the book to be easy to read, not bogged down overly in detail, and be holistic in outlook. Hopefully the book will be useful for junior doctors as they navigate through concerns about the diagnosis itself, or subsequent care and support. For example, due to constraints of employment and training, junior doctors might be unaware of what other health professionals do, or what the needs of carers might be.
Please free to contribute on the form – you can do so anonymously if you so desire.
I received this morning my copy of “What the hell happened to my brain?” written by leading international advocate in dementia, Kate Swaffer. This book is due to be released by Jessica Kingsley Publishers on January 21st 2016. I received an advance copy as I wrote one of the Forewords. The other Forewords have been written by Dr Richard Taylor Ph.D. and Glenn Rees AM Chair of Alzheimer’s Disease International.
Kate is Chair of Dementia Alliance International, the international stakeholder group run by people living with dementia. I feel this book will be incredibly useful for a diverse audience, including doctors – especially those completing specialist training in medicine (general medicine, neurology, psychiatry, surgery especially) – as well as members of the public newly diagnosed with dementia.
I know Kate Swaffer held Dr Richard Taylor Ph.D. in very high esteem. I found the chapter dedicated to him, and his Foreword, very moving.
This book is all about living ‘beyond a diagnosis of dementia” – Kate’s phraseology TM. Kate was the first to articulate and explain the phenomenon of ‘prescribed disengagement’ how people at the point of diagnosis are often put into a process of managed decline when they could be given opportunities for an enriched life. This of course goes together with essential practical help, such as things you can do such as driving. It also explodes myths out of the water – and ignites a provocative debate on the ‘big money’ in dementia, disability discrimination, an urgent need to rework the medical label of ‘challenging behaviours’, early vs late diagnosis, stigma, loneliness, inclusion, and guilt.
It’s not hyperbolic, nor puffery, to claim that you won’t be able to put this book down. It’s an outstanding book, and I strongly commend it to you.
I have spent ages thinking about the contents of my new book on living well with dementia. I submit the manuscript at the end of October 2014, so I have a bit of time yet.
I think the easiest part is the published literature base on which to draw the narrative from. This gives an useful indication about the direction of travel of approaches to dementia.
It’s ‘awkward’ singling people out, but on this occasion, if I may, I would like to.
Jo Moriarty (@aspirantdiva) is at the Social Care Workforce Research Unit at King’s College London.
“Jo joined the Unit in 2002 following the transfer of the National Institute for Social Work Research Unit to King’s College London. Research interests include social work education and dementia care training for social care professionals. … Jo is the Editor of the Innovative Practice Section Dementia: the International Journal of Social Research and Practice.”
Kate Swaffer (@KateSwaffer) is a close friend of mine, and we share between us many concerns in common. I don’t think Kate needs any introduction. Kate has educated me on various initiatives working globally, especially in Australia; but the odd combination of warmth and grittiness of the Dementia Alliance International, a group of people living with different causes of dementia, continues to inspire me.
Chris Roberts (@mason4233) is also a very good friend of mine. Although I’ve never met Chris, we’re hoping to do a @DementiaFriends session at BPP Law School on 1 December 2014.
Norman McNamara (@norrms) doesn’t know he has influenced my book, but the chapter synthesising the competing needs of persons with dementia, their friends and family and others in the use of GPS trackers as smart technology involves a balanced proportionate response on the basis of human rights, as well as an understanding of the cognitive neurology of why people with dementia might want to walk out of their local environment.
Tony Jameson Allen (@TJA_evonet) is somebody who shares EXACTLY my sense of humour. I once had a nice pizza with Tony off Oxford Street, and I explained there my wish to give a coherent explanation of the basis of ‘sporting memories’ based on current neuroscience. I intend to weave in an explanation of musical playlists for reminiscence too here.
I would not of course be so grandiose as to call my friends here a ‘steering group’, but a number of principles have come to light.
I now do not feel it would be useful to anchor the book in a single policy document, however currently influential, as it is indeed true policy documents come and go. They are often highly biased to the interests of their authors or their ‘paymasters’.
I cannot promote global policy if emanating from a single charity. This really does run the risk of promoting charities at the expense of promoting awareness of issues to do with living well with dementia, although often the two may collide.
There are huge problems with firmly entrenching the book in England only. The narrative is hugely relevant to Scotland, Northern Ireland, and Wales, as well as Australia and Argentina, where indeed the audience may even in fact be more sympathetic.
I do not feel that my book on dementia should be intended as a ‘bible’ of policy written for policy wonks. The people I have always been most interested in influencing are people with dementia, people in the care and support network, students (who include future leaders of tomorrow both within and external to the workforce), and practitioners.
I have, paradoxically, no interest in influencing academics, in that I really share the pain of academics needing to advance their own research grants and their own agendas. One of the best things about not being paid to do my research is that I can look unemotionally at the issues.
The other ‘issue’ is that I do not wish to articulate a vision too far forward in the future. Jo pointed me in the direction of a THES fantastic article on writing a textbook. Otherwise, the book ends up being too speculative and quite unhelpful for people currently at the coalface.
I have had it up to my neck in people ‘seeking opportunities’ in dementia. I of course do not wish to be hypocritical.
At quite large cost to myself, in the sense I am paying for my own flight, accommodation and conference pass, I have agreed to do a book signing session for ‘Living well with dementia’ at the @AlzAssociation conference in Copenhagen later this month. The details are here.
I will also likewise on my own present my non-clinical research on policy at the @AlzheimerEurope conference in Glasgow later this year. The details are here.
But I wish people ‘seeking opportunities’ well. I understand their pressures as small enterprises. But I have an agenda of my own – to share with the outside world the various ins- and outs- of how a person living well with dementia can interact positively with his or her own environment. This is not the same as promoting ‘person-centred care’, currently in vogue. And this is certainly not the same as promoting ‘purse-centred care’ as my friend Kate calls it (#KoalaHugs).
Political parties come and go. The greatest challenge I feel for persons living with dementia, their friends and families comes from the politicians mucking things up for them.
I think fixating on a cure serves to promote a narrow set of interests.
Bear in mind I’ve been in this field on-and-off for the last seventeen years.
This is the programme for today which I’m looking to enormously today.
I will be promoting heavily the cause of living well with dementia, to swing the pendulum away from pumping all the money into clinical trials into drug trials for medications which thus far have had nasty side effects.
In keeping with this, I have been given kind permission to give out my G8 Dementia Summit questionnaire to look at delegates’ perception of what this conference was actually about.
We need also not to lose sight of the current persons with dementia, to ensure that they have good outcomes in the wellbeing.
This can be achieved through proper design of care environments, access to innovations including assistive technology, meaningful communities and networks for people with dementia to be part of and to lead in, and proper access to advocacy support services and information which empower choice and control.
There’s a lot to do here – and we need to have high quality research into all of this arm of research too.
Coming back home to Scotland is like travelling back in time for me.
I was born in Glasgow on June 18th 1974, and my lasting memory of leaving Glasgow for London 37 years ago was how relatively unfriendly Londoners were in comparison.
Of course the train journey through the beautiful England-Scottish border countryside brought it back to me. There’s a lot to be said for getting out of London. It’s an honour to be here back in Scotland.
I had absolutely no idea I would have such a warm welcome here in Scotland. Still feeling incredibly emotional I’m here at all in Glasgow.
Dedication • Acknowledgements • Foreword by Professor John Hodges • Foreword by Sally Ann Marciano • Foreword by Professor Facundo Manes • Introduction • What is ‘living well with dementia’? • Measuring living well with dementia • Socio-economic arguments for promoting living well with dementia • A public health perspective on living well in dementia, and the debate over screening • The relevance of the person for living well with dementia • Leisure activities and living well with dementia • Maintaining wellbeing in end-of-life care for living well with dementia • Living well with specific types of dementia: a cognitive neurology perspective • General activities which encourage wellbeing • Decision-making, capacity and advocacy in living well with dementia • Communication and living well with dementia • Home and ward design to promote living well with dementia • Assistive technology and living well with dementia • Ambient-assisted living well with dementia • The importance of built environments for living well with dementia • Dementia-friendly communities and living well with dementia • Conclusion
Reviews
Amazing … A truly unique and multi-faceted contribution. The whole book is infused with passion and the desire to make a difference to those living with dementia…A fantastic resource and user guide covering topics such as communication and living well with dementia, home and ward design, assisted technology, and built environments. Shibley should be congratulated for this unique synthesis of ideas and practice.’ Professor John R Hodges, in his Foreword
‘Outstanding…I am so excited about Shibley’s book. It is written in a language that is easy to read, and the book will appeal to a wide readership. He has tackled many of the big topics ‘head on’, and put the person living with dementia and their families at the centre of his writing. You can tell this book is written by someone who ‘understands’ dementia; someone who has seen its joy, but also felt the pain…Everyone should be allowed to live well with dementia for however long that may be, and, with this book, we can go some way to making this a reality for all.’ –Sally-Ann Marciano, in her Foreword
I felt very happy to give a copy of my book to Prof Sube Banerjee, newly appointed Chair of Dementia at Brighton and Sussex Medical School. Sube has in fact been the lead for England for dementia – his work is quoted in my book, and I think he’s made an enormous contribution to the living well with dementia literature.
And what does the future hold for ‘living well with dementia’?
Here is a sample chapter from my book ‘What is living well?’
‘Living well’ is not some bogus mantra for the hell of it. It is an ideological standpoint which serves to promote the dignity of our fellow citizens who happen to also have a clinical diagnosis of dementia.
And here are the “beautiful people” who came to my book launch at the Arlington Centre, Camden, one afternoon in February. I can’t believe that this wasn’t even a month ago now!
One of the happiest days, as well, was giving Joseph a copy of my book as a gift.
Joseph was in fact my carer when I could hardly walk or talk, when I was in physical recovery from meningitis on ITU (where I was unconscious in 2007).
And those were the days…
And THIS is the famous poppy.
This picture was taken by Twitter pal, @charbhardy, first amongst equals in the #dementiachallengers.
After I said I was buying my own copies, @KateSwaffer asked:
But Kate has read a copy of my book from cover to cover:
And as @Norrms says – how can ‘living well with dementia’ fail?
I held a private book launch for guests of mine, who are interested in dementia at the grassroots level.
The talk was dedicated to Charmaine Hardy (@CharBHardy), whose husband has a very rare type of dementia known as primary progressive non-fluent aphasia. The publishers picked her poppy to be the cover of my book.
This for me, as was later suggested, as the book itself is dedicated to the memory of my late father (who did not have dementia but had a severe back pain which severely limited his quality of life in his final years.)
A special mention to Thomas Whitelaw (@tommyNTour) – a true gentleman and a Scot (!)
It was wonderful to meet Darren (@MrDarrenGormley) for the first time. Darren’s clearly someone who sees the person; with superb empathy skills, Darren and colleagues will need to be the change catalysts to break down obstructive silos.
It was a massive honour Beth Britton (@BethyB1886) could make it. Beth, like many in the room, of course knows this subject inside-and-out, and I am personally grateful to Beth for campaigning for the use and validation of more effective assessment of wellbeing approaches.
Here are some happy photos of my book launch.
I really couldn’t have been happier.
I am strongly against promoting my thesis about wellbeing with involvement of people as marketing ‘window dressing’
On the other hand, it gives me enormous pride to present to you the video presentations recorded by Norman McNamara, Kate Swaffer and Dr Peter Gordon which I played to my guests at the Arlington Centre in Camden on Saturday.
Friends of mine, who happen to be currently living with dementia, are also reading the book.
I mention during my presentations the ‘Purple Angels’, including Lynette Richards, Julie Line, Kim Pennock, Jane Moore, and of course Norman McNamara.
And no I am not a retainer from Ostrich Care! x
I feel it would have been it would have been “defeating the object”, if the book could not be read by people living lives with dementia.
Dr Peter Gordon is the only one of the three who does not have a dementia. He is a Consultant Psychiatrist working in this field. It was incredibly nice of him to put together his film for me, shown below.
Dedication • Acknowledgements • Foreword by Professor John Hodges • Foreword by Sally Ann Marciano • Foreword by Professor Facundo Manes • Introduction • What is ‘living well with dementia’? • Measuring living well with dementia • Socio-economic arguments for promoting living well with dementia • A public health perspective on living well in dementia, and the debate over screening • The relevance of the person for living well with dementia • Leisure activities and living well with dementia • Maintaining wellbeing in end-of-life care for living well with dementia • Living well with specific types of dementia: a cognitive neurology perspective • General activities which encourage wellbeing • Decision-making, capacity and advocacy in living well with dementia • Communication and living well with dementia • Home and ward design to promote living well with dementia • Assistive technology and living well with dementia • Ambient-assisted living well with dementia • The importance of built environments for living well with dementia • Dementia-friendly communities and living well with dementia • Conclusion
Amazing … A truly unique and multi-faceted contribution. The whole book is infused with passion and the desire to make a difference to those living with dementia…A fantastic resource and user guide covering topics such as communication and living well with dementia, home and ward design, assisted technology, and built environments. Shibley should be congratulated for this unique synthesis of ideas and practice.’ Professor John R Hodges, in his Foreword
‘Outstanding…I am so excited about Shibley’s book. It is written in a language that is easy to read, and the book will appeal to a wide readership. He has tackled many of the big topics ‘head on’, and put the person living with dementia and their families at the centre of his writing. You can tell this book is written by someone who ‘understands’ dementia; someone who has seen its joy, but also felt the pain…Everyone should be allowed to live well with dementia for however long that may be, and, with this book, we can go some way to making this a reality for all.’ –Sally-Ann Marciano, in her Foreword
Extracts from my talks
This talk was given by me (Dr Shibley Rahman) on Saturday 15th February 2014 to a group of personally invited guests. Guests included persons with dementia, carers (past and present), campaigners, academics in social care, innovation and service provision, dementia club coordinators, and dementia nursing specialists.
1. This is the first segment of the first talk.
Particular things to look out for include:
James Murray-White (@sky_larking) 6 mins
Beth Britton (@BethyB1886) 7 mins
and their @AlzheimersBRACE work
Norman McNamara’s message at 15 mins
@mason4233 (Chris Roberts)’s tweet at 19 mins
2. I start off by thanking Prof John Hodges for his kind Foreword (0) and a clear description from Sally Marciano (@nursemaiden) why she, kindly, felt the book might be helpful. I am honoured at Sally’s personal contribution to my book.
I introduce the topic of personhood, using Tom Kitwood’s seminal work as a brief introduction only, but clearly the topic is huge. I then touch upon the practical difficulties academics and practitioners have had for their definitions of ‘living well’, and the implications therefore for its measurement.
There’s a clearly a debate to be had about why diagnosis might have been so problematic, using @edanaming’s research (Edana Minghella) as a springboard. At around 9’55”, I then use the problems in giving a potential diagnosis of dementia to a person is LGB or T as an illustration.
Gill Phillips (11′ 30″) kindly gives a brief description of the background and philosophy behind ‘Whose Shoes’, a modern application of personalisation which allows service users, including persons and patients with dementia, a say on what they wish to achieve from their person-centred care.
At around 16’30” Lucy Jane Masters (@lucyjmasters), a specialist nurse in dementia, explains the remarkably successful ‘Dementia is my business’ initiative, innovative badges which have acted as an ‘ice breaker’ for bringing about a cultural change in dementia care even amongst health professionals.
This next segment concludes with a brief discussion of the ethical issues of diagnosis, through Dr Peter Gordon’s contribution (@PeterDLROW). I use Peter’s letter to the BMJ as an introduction to the seminal four ethical principles of Beauchamp and Childress (1979), i.e. autonomy, beneficence, non-maleficence and justice. I also include Peter’s video which I will also separately upload elsewhere.
3. I then give an overview of some essential topics germane to this academic debate.
The contributions by the medics have not been a complete farce.
There’s been a lot of scrutiny about the ethical framework regarding dementia from people who are medically qualified, such as Dr Peter Gordon (@peterDLROW), Consultant in dementia. This was been necessary to neutralise some of the potent fraudulent memes in the media from elsewhere.
There’s been wonderful work too by @nchadborn on including service users’ views and opinions into the design of health services, from an applied perspective, as part of Nottingham University.
And the cognitive neurologists have been important in delineating the diverse cognitive presentations of dementia. Prof Facundo Manes’ group in Buenos Aires (@manesf) have been identifying how social cognition in the behavioural variant of frontotemporal dementia can be heavily dependent on context. As an example of this, I explain the Ebbinghaus Illusion and Titchener circles. Prof Manes is a colleague of ours in cognitive neurology, and wrote one of the Forewords to my book.
4. Particular things to look out for now include:
12″ Personal dedication to Charmaine Hardy [@CharBHardy] from England for the poppy on the front cover of my book, and being a key member of the #dementiachallengers
15″ The “Purple Angels” in raising dementia awareness and dementia friendly communities worldwide narrative. Jane Moore and Norman McNamara jointly designed this motif.
21″ beginning of the message by Kate Swaffer (@KateSwaffer), based in Adelaide, Australia, to my guests. (this is the beginning of the pre-recorded message; the second half of the message is in a different video.)
5. This last segment of my recordings contains the second part of Kate Swaffer’s message to my guests, and my film ‘Love is a wonderful thing’ for my community of delegates for the book launch.
The book
The book’s Amazon page, with some testimonials, is here.
The publishers’ page (Radcliffe Publishers) is here.
Independent blogposts by Gill Phillips (one of my guests) about my book launch at the Arlington Centre
These blogposts capture for me what was an extremely happy occasion for me.
If you buy the book off Amazon, please remember not to buy it directly from them or you could be waiting 9-11 days. Here’s the link to the book on Amazon. I bought it today from “The Book Depository” as my complimentary copies hadn’t arrived. But I know it’s selling well. Yesterday it reached #3 in the UK. And I was honoured to receive this tweet from Prof Simon Wessely, who is at the Maudsley/Institute of Psychiatry, and President-Elect of the Royal College of Psychiatrists.
@legalaware am impressed..looking forward to it hitting number 1 — Simon Wessely (@WesselyS) January 27, 2014
I’ll be presenting the book to 25 guests in private in Camden on Saturday 15th February 2014. This includes of course Charmaine Hardy whose poppy is on the front cover:
