I don’t go to “trade fairs” where people display their latest ‘products’ for dementia. I am an outsider, and very happy to be so so.
But I do feel my book is having an impact slowly with the right people.
For example:
@a_carers_voice sitting in sunshine London garden reading @legalaware living well with dementia – what a read … Brilliant Shibley …
These are just some of the messages in the ‘little black book’ I was given at my book launch for ‘Living well with dementia’ (details here). Ones not shown have not been excluded out of any malice. I am hugely proud of people who kindly made it to Camden to celebrate my book on February 15th 2014. I am of course hugely indebted to Gill Phillips (@WhoseShoes) for presenting me with this ‘little black book’, which I promise to cherish forever. #KoalaHugs
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?
These structural problems are, not least, to what extent will the NHS be paid for out of general taxation in the long term. The issue is not fudged altogether, in that Oldham calls for a future government to look into this as a priority.
Nonetheless, the Oldham Commission does fudge the issue of how much integrated and social care systems can rely on private not state provision. This is a strange ‘elephant in the room’, given the emphasis of the report on individualised budgets (call them what you will, personal budgets or personal care budgets).
Oldham does however concede helpfully that ‘financial arrangements in the adult social care system are equally fragmented, with complex and overlapping funding and provision arrangements between private and public funding sources, and private and public providers of care. The multitude of private care providers adds to this complexity.’
The need to repeal section 75 Health and Social Care Act is pivotal to all this. In fact, a repeal of the whole Act, as Labour (as Andy Burnham and Ed Miliband have indeed promised), would be helpful. This is, quite simply, because legally integration might offend the competition legal infrastructure established by section 75 and its associated Regulations, and of course sit uneasily with EU competition law.
At the moment, the NHS and social care services are geared up to ‘reacting to events’. And this is reflected in the payment by results mechanism (a reincarnation of ‘activity based costing’).
“Public funding has increasingly focused on those with greatest needs – particularly as rationing of care has become more severe – driven by a reactive, crises oriented approach rather than a focus on early intervention and wellbeing.”
Wellbeing is of course not just the opposite of illbeing, though lessons can be learnt from poor hydration and nutrition, for example, in individuals with advanced dementia.
The Oldham Commission view health and wellbeing boards as a vehicle for collective system leadership for whole person care,” involving the leaders of existing organisations working together to coordinate care and align incentives across their geography.” And therefore it is critically important that they are fluent in what wellbeing is, and how to promote it. This is especially important for dementia, but I would say that wouldn’t I.
Information is obviously vital in decision-making along a path to wellbeing however defined. I, in fact, devote a whole chapter to decision-making in my book ‘Living well with dementia’.
The exact mechanism of integration of voluntary organisations and health and care services to provide a combination of medical and non-medical support as part of the care pathway for older people living with multiple long term conditions needs of course to be put under greater scrutiny.
The ‘deal‘ between the Department of Health and the Alzheimer’s Society in promoting ‘Dementia Friends’ is of course welcome in promoting awareness of dementia. But we do need to be careful that, firstly, other dementia charities do not suffer in a ‘zero sum gain’ manner. Secondly, we need to be doubly sure that charities are not expected to pick up any shortfall in state provided services. Already there’s valid criticism of the way in which private companies can legitimately ‘cherry pick’ services to maximise their shareholder dividend.
Oldham’s group is right to refer to “a strong evidence base now exists to target key risks to health independence and wellbeing in old age.” Clearly there’s a balance to be struck between independence through assistive technologies perhaps of persons living with dementia in their own homes, and social inclusion with other persons face-to-face. Online communities offer great value for persons with dementia nonetheless.
Oldham’s team also helpfully reviews how Preventive aspects of whole person care must therefore pay attention to environmental factors. The emphasis in the Report is on diet, but this is valid too for dementias in the context of vascular dementias. Vascular dementias are common in older age groups, and certainly medical professionals, dieticians and others are keen at considering cholesterol and diet, and their interaction with other factor such as smoking.
Therefore, one of the conclusions is that, “Whole person care should not only include joining up services …”
It is inescapable that whole person care should include ‘joined up services’. Data sharing different disciplines, despite the concerns about #caredata, needs to involve a more effective dialogue with the general public, one expects.
The report also picks up on a number of other important issues.
One is the possible interaction with benefits. People with disabilities, for example, are right to wonder if benefits might be taken away if the system drives towards ‘whole person care’. On the other hand, it does not perhaps make intuitive sense for the care and benefits situation to work in isolation?
This is of course an intense political quagmire, given ATOS’ role in both the GP extraction scheme and the implementation of the much criticised disability and employment benefits.
Also, it turns out that 70% of people over 75 live with a major long term condition and a quarter live with two or more. Many persons living with dementia also live with otherconditions.
Furthermore, the Report notes that, “in all groups in society, housing has a large impact on people’s health and wellbeing.” As perhaps care embraces personhood in the true meaning of Kitwood or otherwise, the influences of other people in society, such as housing or the criminal justice system to name but a few, may become apparent.
But what the State is by that stage is anyone’s guess. In the meantime, the Oldham Report is fully consistent with my book ‘Living well with dementia’.
I had expected this to be the case. In fact, there’s a paragraph on whole person care in my book.
I personally think I’ve made a good start in describing the rationale in the English policy for ‘Living well with dementia‘.
On the other hand, from talking with various people in person, and from conversations I’ve had in the social media, I feel there are some chapters I need to write in a follow-up book.
I’d be grateful if you could consider the following thoughts, and perhaps advise me accordingly?
Chapter 1 Introduction
Chapter 2 Specialist groups living well with dementia
e.g. LBGT, travellers, racial groups, persons with learning difficulties
Chapter 3 Young onset dementia and living well
This chapter is likely to include a focused look on the changing needs of the early onset dementia/young onset group. It is also likely to include the drive for genetic risk factors identification and whether this is likely to help policy or not.
Current state of play in the genetics of the ‘tauopathies’ in dementia of the Alzheimer type and frontotemporal dementia. Personalised medicine, genomics and data sharing
Chapter 4 Delirium and dementia: are they living well together in policy?
There is currently a slight confusion how cases are found in secondary care in delirium which inform on case finding in dementia.
An analysis will be presented on a relative lack of interest in assessing an effect of timely interventions to promote living well with dementia, and how this has unwittingly distorted the screening debate for dementia based upon the Wilson and Jungner (1967) criteria.
Chapter 5 Who cares about living well with dementia?
Shared purpose in dementia person-centred care.
Relationship-centred care
Institutional and inclusive approaches to care.
Carers and living well with dementia – tip of an iceberg?
Carers and unpaid family caregivers
The anticipated demographics of unpaid family caregivers
How to assess the ‘quality’ of a care home
‘Triangle of care’ and RCN guidelines
Carers’ Trust
Kate Swaffer’s “prescribed disengagement model”
The rôle of dementia specialist nurses, including Admiral Nurses
Chapter 6 Framing the narrative for living well with dementia
The effect of language in the media on living better with dementia
Cultural metaphors: war, tides and fights
Stigma and discrimination
Questionnaire study of perception and identity: the #G8dementia summit
Medicalisation, Alzheimerisation and living well with dementia
Chapter 7 Can living well with dementia with personal budgets work?
Cascading cultural change: “dementia champions”
Personal budgets and living well with dementia
History of this policy theme
Implications for choice and control
Implications for advocacy
Chapter 8 Nutrition and living well with dementia
Nutrition champions
Difference between audit and research
Royal College of Psychiatrists Dementia Audit
“Food First”
Chapter 9 Art and creativity in living well with dementia
This topic was inadequately addressed in my first book ‘Living well with dementia’, I feel
Chapter 10 Living well with dementia with sporting memories
“Memory boxes”
The cognitive neurology of “sporting memories” and living well with dementia
The application of neuroscience to understanding reminiscence in dementia
There is a temptation not to take sporting memories and reminiscence techniques not very seriously, as they are currently poor understood.
This chapter will review the evolution of the “sporting memories” initiatives, and consider how they might have a powerful neuroscientific substrate in memory systems after all.
Chapter 11 Incontinence and living well with dementia
Stress and urge incontinence.
Incontinence in different types of dementia.
Incontinence and medications.
Non-surgical approaches for incontinence.
Chapter 12 Thinking globally about living well with dementia
Examples of various initiatives domestically and internationally.
Chapter 13 Why does housing matter for living well with dementia?
Design of housing and adaptations
The structure and function of the English housing sector. The ‘care coordinator’
Chapter 14 Is there any need to track living well with dementia?
Care co-ordinators.
Safety. Human rights, liberty and the law. “Smart technology”.
Chapter 15 Networks, innovation and living well with dementia
Networks and innovation.
The importance of collaboration and innovation in securing competitive advantage .
Social media and mitigation against loneliness.
Case study: life story networks.
Chapter 16 Promoting leadership
Leadership in person-centred care
The involvement of “people” in the JRF ‘four cornerstones’ model.
Corporate social responsibility, marketing and strategy.
The history of the Japanese befriending policy and implications for England.
RSA Social Brain and collective decision making
Some real-life experiences.
Chapter 17 Seeing the whole person in living well with dementia
Going from a philosophy of ‘risk mitigation’ to ‘living well’
Whole person care and living better with dementia.
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.
Well done to Dr Peter Gordon who was great in giving out my ‘Welcome Packs’.
Almost Specialist Registrar standard…
But more seriously it was good to see so many good #Twitter friends in my audience, as I played personal messages by Kate Swaffer and Norman McNamara, and films by Beth Britton and Peter Gordon. It was a huge delight to catch up with Gill Phillips who gave a superb gift from the group. I especially enjoyed talking to Darren Gormley, whom I’d never met before. It was brill to meet Lee to, for the first time. I really felt amongst research friends too, with Neil Chadborn and Jo Moriarty in attendance. I completely was at one with feelings expressed by Lucy Jane Marsters about aspects we must get right in future, and James Murray-White had a sense of humour I won’t be forgetting in a hurry (top bloke, I hasten to add!) I learnt a lot from Zoe Harris, and felt I understood her innovation for care, and I felt I had executed my duties in describing the support given by carers.
Whenever I had a despondent moment during my talk, I looked at Shaun Naidoo who at least had the grace to talk at my jokes. It was a honour that Margaret Kilby made it too from Stafford to represent, like Beth, the lived experience of caring for someone extremely close with a dementia.
Above all, the afternoon was dedicated to Charmaine Hardy, Sam and Ben. I organised with some of my guests that we would arrange for Charmaine to come up to London to see us, as we missed her so much today.
Brought flowers home for my mum to cheer her up… Huge smile on my face when I saw the beautiful bouquet delivered for me #feelingloved — Beth Britton (@bethyb1886) February 14, 2014
@charbhardy@mkilll@legalaware Morning Charmaine, Margaret & Shibley! Just one more day Shibs, exciting! See you all tomorrow, safe travels — Beth Britton (@bethyb1886) February 14, 2014
What question do I ask #dementia carers 2 find out if they feel supported (oh, & what does ‘supported’ really mean?) Pls RT @edanaming — Louise Searle (@LouiseSearle2) February 13, 2014
Frustrating conversation today with manager at grans home. Too ready to accept mediocrity. I’m not #dementia — Lucy Jane marsters (@lucyjmarsters) February 14, 2014
Justin-jargonbuster-Waring: Implementation research: not ‘doing’ #nhs change; finding best way to facilitate evidence-based practice #clahrc — Neil Chadborn (@nchadborn) February 14, 2014
John Betjeman feared bureaucracy .. an “as if” caring world. A world based on checks and ticks.
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:
