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Why I am extremely grateful to key individuals for thoughts on my new book

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.

Don’t promote your agendas in my name, please.

Living well with dementia: Happy by Pharrell Williams

My close friend and colleague, Kate Swaffer, wrote an article this morning in Australia on being diagnosed with dementia vs ‘suffering’.

I strongly recommend it to you here.

This was an exchange of ours this morning on Facebook.

This topic has always caused heated exchanges for all of us.

I hope you can bear with us, as none of us mean any offence in this.

I think part of the issue is that, further to ‘once you’ve met one person with dementia, you’ve met one person with dementia’, our different views of that person with dementia can vary quite widely too.

Our discussions of ‘Living well with dementia‘ continue..




[Verse 1:]
It might seem crazy what I’m about to say
Sunshine she’s here, you can take a break
I’m a hot air balloon that could go to space
With the air, like I don’t care baby by the way[Chorus:]
Because I’m happy
Clap along if you feel like a room without a roof
Because I’m happy
Clap along if you feel like happiness is the truth
Because I’m happy
Clap along if you know what happiness is to you
Because I’m happy
Clap along if you feel like that’s what you wanna do[Verse 2:]
Here come bad news talking this and that, yeah,
Well, give me all you got, and don’t hold it back, yeah,
Well, I should probably warn you I’ll be just fine, yeah,
No offense to you, don’t waste your time
Here’s why


Hey, come on

Bring me down
Can’t nothing bring me down
My level’s too high
Bring me down
Can’t nothing bring me down
I said (let me tell you now)
Bring me down
Can’t nothing bring me down
My level’s too high
Bring me down
Can’t nothing bring me down
I said

[Chorus 2x]

Hey, come on

Bring me down… can’t nothing…
Bring me down… my level’s too high…
Bring me down… can’t nothing…
Bring me down, I said (let me tell you now)

[Chorus 2x]

Come on

Norman (@norrms)

Kate (@KateSwaffer)

Updated plan for my new #dementia book – comments very welcome

The aim of this book is two fold

1. First to hoover up topics I didn’t properly address the first time around in my book ‘Living well with dementia‘.


2. To try to cover the more common themes in various guises of  ‘Dementia Champions’ courses held in England.


I would be extremely grateful for any topics in the list you’d like me to focus on.

The review of my book “Living well with dementia” today in Nursing Times

Thanks very much to the team at @NursingTimes for the first review of my book “Living well with dementia”.

I am hugely honoured.


This review was first posted on the page in the “Book club” series of the magazine.


1 May, 2014

Title: Living Well with Dementia

Author: Shibley Rahman

Publisher: Radcliffe Publishing

Reviewer: Nigel Jopson, home manager, Birdscroft Nursing Home, Ashtead, Surrey

What was it like?

A meaty 300 plus pages book that attempt to cover all aspects of the dementia experience and it succeeds. It looks at the concept of living well what it is, how to measure it and how to develop services and attitudes to incorporate it. The book is up to date and relevant and has excellent sources and references. There are parts that can act as an instruction manual for good practice such as the suggestions about dealing with consent in chapter 11. A definite “cut out and keep” piece. Probably the most useful book I have read this year.

What were the highlights? 

It covers everything you are likely to encounter in an accessible and informative way. It is nice to see some comments on ward design rather than purely care home as is more common.

My favourite part was in the conclusion where the author says “…writing a book on wellbeing in dementia is an impossible task.” I believe that may be the only part where she is wrong as this book is fabulous.

Strengths & weaknesses:

An enormous amount of information presented well and user friendly. I was worried it may have been too academic but it was not. It has good references and I particularly liked the way it attempted to integrate the whole idea and encouraged the use of other sources.

Who should read it?

This book should be essential reading for anybody with any contact with people living with dementia, which realistically I suppose means everybody. It can help towards a better understanding not only of dementia but the ways that peoples’ lives can be improved and enriched with a little effort and knowledge.

Living well with dementia

Through raising awareness of dementia, we must ensure befriending doesn’t become belittling

Dementia Awareness Week 2014 is this year Sun 18th May – Sat 24th May 2014.

Some ‘symbols’, such as the ‘Purple Angels’, clearly offer much reassurance.


I am genuinely interested in what ‘dementia awareness’ is.

Raising awareness can mean different things to different people.

It’s easy for me to overestimate what dementia awareness might be, as I have done my undergraduate finals, my Ph.D and my postdoc in brain conditions, and mainly dementia.

I’ve never seen a Dementia Friends script.

I’m mildly worried about whether the information in this script is accurate, but not any more than any other information from any other awareness publications.

Having worked in two head offices of large medical charities, I am more than aware of the crap that is used for fundraising.

But I do worry in case what you’re promoting is simply a source of income, and dwarfs entirely what the message is.

The message here is raising awareness of all things dementia.

We have to be very careful that befriending initiatives do not inadvertently end up belittling the whole issue of dementia.

I don’t particularly mind if people wish to purchase ‘Friends for Dementia’ air fresheners (spoof).

A1 copy

I don’t particularly mind if people wish to purchase ‘Friends for Dementia’ furry care dice (sic) (spoof), either.

A2 copy

Some thought inevitably has to go into ‘raising awareness of what’?

Chris Roberts, a supporter of the ‘Dementia Friends’ programme, suggested,

To educate people, so they can spot symptoms early, help others in the community and help carers cope better, to show people in early stages are not to be written off, it’s all about education.”

This is of course a laudable aim.

But spotting symptoms of dementia in yourself may not be as easy as spotting a breast lump or a testicular lump (which admittedly can be difficult to spot).

Some people living with dementia are unaware of their symptoms, a phenomenon known to clinicians as ‘anosognosia’.

Raising awareness of the practical difficulties that Admiral Nurses have had in being commissioned?

And the stories keep on coming of potential or actual actioned cuts of dementia services in the real world: such as this one in Devon, and one in Essex.

I asked Kim Pennock, a prominent dementia campaigner in England, whether campaigners for dementia were concerned about cuts in social care.

“- many are now shouting loudly as the cuts are ridiculous and will put vulnerable people at risk”

Meanwhile, the Alzheimer’s Society have introduced a scheme for accreditating ‘dementia friendliness’.

The process is designed to enable communities to be publicly recognised for working towards becoming dementia-friendly and to show that they are following common criteria that are based on “what we know is important to people affected by dementia and will truly change their experience.”

It would be odd if the Alzheimer’s Society would be the sole arbiter of dementia friendliness.

I find this particularly perplexing as the Joseph Rowntree Foundation have done wonderful work on dementia friendly cities such as York.

Also I really cannot praise enough the work by ‘Innovations in dementia‘.

Innovations in Dementia has in the past been working through the Ageing Well programme with two areas, Hampshire and Sheffield, to support their work to create dementia friendly communities.

As part of the work in Hampshire, they have produced a dementia friendly communities toolkit, which was designed to support work at a local level.

The tools have even been used by the Alzheimer’s Society locally.

But the Alzheimer’s Society has a massive business advantage nationally.

Its ‘Dementia Friends’ programme has massive funding.

The Alzheimer’s Society also has capable resources for its marketing.

The Alzheimer’s Society has just appointed Lida to creating a series of campaigns that aim to increase the acquisition of new supporters and grow its mass participation events.

But accreditation can be good for ‘competitive advantage’.

The UK division of Hilton Worldwide has become the first hotel company to be awarded the Carbon Trust Standard after measuring and reducing its carbon footprint.

The award requires organisations to measure, manage and reduce their carbon footprint and make reductions vear-on-year.

Hilton believes the accreditation will give it a competitive advantage over rivals when the government’s Carbon Reduction Commitment league table begins next year.

There’s no doubt in my mind that dementia ‘friendliness’, however delivered, is a wonderful societal aim.

But it should not be a cover for cuts in social care or in the NHS.

And also it’s widely established that ‘Dementia Friends’ cannot be used in place of training for those who need more than basics.

I, too, will be doing my bit too though for raising awareness too.

I’ll be doing a ‘Meet the author’ slot at the London Alzheimer’s Show.

Please follow the Show on Twitter (@AlzheimersShow).

I think also it’ll be possible to see my book, a book which is very ‘un-medical’ in its approach. It’s all about celebrating the individuality of a person, what he or she can do, and how the environment is so important for quality of life.

It’s a different way of doing things.

But that’s also raising awareness.

Why does Jeremy Hughes appear to have done a ‘volte face’ over anti-dementia drugs?

I have previously discussed the Alzheimer’s Society Drug Discovery Programme video here.

About 13-14 seconds in, Fiona Phillips – who is actually an outstanding campaigner for dementia causes – says clearly, “Current treatments only help with symptoms for a short while.”

About 15-16 seconds in, Fiona Phillips says, “They don’t stop dementia from progressing“.

The current CEO of the Alzheimer’s Society is Mr Jeremy Hughes.

In the July-August edition of Journal of Dementia Care, volume 12, number 4, page 12, for 2013, Hughes states the following in response to an article by Dr Martin Brunet in the same journal.


And this has been clearly at odds with the NICE guidance.

Here is for example what the judicial review on these guidelines had demonstrated.

NICE June 2010

I must admit that this is only going from bad to worse.

Today, in the BMJ, Dr Peter Gordon wrote as follows in an article entitled, “No evidence exists that “anti dementia” drugs modify disease or improve outcome” (BMJ 2014;348:g2607):


“More than three months have passed since the G8 dementia summit was held in London, allowing time for critical thinking over its most laudable aim to “create disease modifying treatment to try to stop, slow, or reverse the condition.”1 This was less than a year after I gave an interactive talk based on one question: “What do we mean by Alzheimer’s disease?”2

In my talk I presented what evidence told us about currently available “anti-dementia” drugs, that, as yet, there is no conclusive evidence that they modify disease or improve outcome.3

In sharing this evidence with my audience of health professionals, many seemed to exhibit furrowed brows and looked at me as if I were an “outlier.” During and after my talk the evidence I presented was challenged by several of those who attended. These drugs, they confirmed, in their understanding, did modify outcome and that is what they told patients. It was further explained to me, after my presentation, that this was the “prevailing” understanding.

Leading world experts established at the G8 dementia summit that there was no evidence that existing drugs modified disease, and the World Health Organization director-general Margaret Chan summarised this for G8 in the following way, “in terms of a cure, or even a treatment that can modify the disease, we are empty-handed.”4

This story seems to show that my profession was perhaps not following evidence but, rather, wishful thinking and, indeed, mythology. I am left wondering why this happened and why such evidence was not properly shared with patients. It also occurs to me that industry, politicians, and national leads seem to have made little effort to challenge this “prevailing understanding,” at least until the “anti-dementia” drugs had largely come off patent.5 Our patients deserve better. They deserve truth. We all need to do better with that cherished and high ideal of informed consent.”


There is clearly something going wrong with the quality of debate about dementia from clinicians and non-clinicians.

I remember having immense difficulties with this issue in the final chapter (18) of my book ‘Living well with dementia’, as per the following extract:


It would be helpful to know if Mr Hughes has changed his mind between then and now, with the #G8dementia having intervened; of course it is possible that the Drug Discovery programme video is genuinely at odds with the views of Hughes. It is noteworthy that Pharma themselves are sending out different mood music concerning the efficacy of their “anti-dementia drugs” which I mention here in my G8 dementia summit survey blogpost.


All of this really does matter if we as academics with some knowledge about this area are to conduct the correct discussion about dementia on behalf of persons with dementia and carers including unpaid caregivers.



Copies of “Living well with dementia” are doing more cameos than Hitch

English film director Alfred Hitchcock (“Hitch”) made cameo appearances in 39 of his 52 surviving major films.

For the films in which he appeared, he would be seen for a brief moment boarding a bus, crossing in front of a building, standing in an apartment across the courtyard, or even appearing in a newspaper photograph.

This playful gesture became one of Hitchcock’s signatures; and fans would make sport of trying to spot his cameos.

As a recurring theme, he would carry a musical instrument — especially memorable was the double bass case that he wrestles onto the train at the beginning of “Strangers on a Train”.

In “The Birds”, as Melanie Daniels (Tippi Hedren) enters the pet shop, Hitch is leaving with two white Sealyham terriers.

This is a film of every single ‘Hitchcock cameo’.

Here are some recent cameos.

yet more copies


very nice photo Living wildGill

Full details about my book are on the Radcliffe website here.

Here are further ‘tweets of support’.

And above all…


Thanks to Gill (@whoseshoes) for capturing the happiness of friends at my book launch for ‘Living well with dementia’

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:


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

And the last word is left to #KoalaHugs:

My name is Shibley, and I’m addicted to buying my own book ‘Living well with dementia’

I’ve sat in more recovery sessions than you’ve had hot dinners….

.. possibly.

So I get a surge of dopamine whenever I receive yet more copies of my book from Amazon.

Worth every penny.


I am Shibley. and I’m addicted to buying my own book.

in a circle

But I also have a weird habit of getting people I know to sign my copy of my book.

I get withdrawal symptoms from not having enough copies.

I also get tolerance – I need to have an increasing number of copies to get the same “kick” from my book.

Thanks enormously to the following ‘well wishers’, though, who have signed my book.

A huge thanks to Gill  (@WhoseShoes) for her unflappable support of me and my book.

Here’s Gill’s blogpost.

And here we are!


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’?

Other ‘signatories’ include:


Richard Humphries


I’ve known Lisa for yonks on Twitter. Lisa is one of the few people who’ve supported me through the bad times too.








But now you can ‘Look Inside’ to get a flavour of my book – as there is now a Kindle edition (thanks to Alice in my book publishers @RadcliffeHealth)

Here it is on Amazon.

Look inside

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!

Book launch

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…

Royal Free

And THIS is the famous poppy.

This picture was taken by Twitter pal, @charbhardy, first amongst equals in the #dementiachallengers.

the famous poppy

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?

Living well with dementia – lessons for ‘whole person care’

There were of course huge structural problems in the much heralded Oldham report on whole person care was published this week.

It’s officially called ‘One Person, One Team, One System‘.

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’.

Decision making flowchart

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.

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