‘Living better’ can become a reality for people with dementia if they lead policy

In the penultimate chapter in my book, I provide a reasoned case why people living with dementia should be given a chance to articulate details of ‘policy’.

Virtually all of us who attended the event (“A conversation with Kate and Shibley” described in this previous blogpost of mine on this blog) found the afternoon ‘inspiring’ or the such like. Of course, this can be expected from fifty misguided hyperbolic attendees; but in fairness to us, we all had some sort of knowledge about dementia (in fact six of the delegates definitely could reasonably be called ‘experts’ living with dementia, so are experts in their dementia in their time.)

I brought up the idea that we appear to have a new national policy document every year almost. The wheel keeps on being reinvented. I cited the work of Wendy Hulko (@IncredibleHulko), that the views of people living with dementia had been systematically disenfranchised. I also cited the work of Ruth Bartlett (@RuthLBartlett) to do with reframing the narrative, e.g. away from a person being defined by his or her dementia.

The notion that “nothing can be done” is as untrue now, as it is untrue for the time in the future where we do happen to have stumbled across “cures” for the dementias in a piecemeal fashion in times to come. Here I’m arbitrarily defining a cure as a practical means of reliably stabilising a disease process of a dementia. For example, various psychological therapies have been demonstrated to improve cognitive functioning as well as other factors such as confidence and wellbeing. It’s likely that such psychological reablement and rehabilitation may provide some of resilience-boosting effect through the maintenance of appropriate activity-based neural connections.

The shift towards identifying the precise cognitive ‘make up’ of a person living with dementia allows identification of the precise abilities that a person with dementia at a given time has. This is a more productive use of the ‘follow up’. If in England services were commissioned fulfilling the s.1(1) Care Act (2014), to promote wellbeing, we could re-orient the Titanic that is the deficits-based medical model.

I gave a presentation on citizenship and living better with dementia as part of an event, co-hosted with Kate Swaffer, last Saturday. The slides for this presentation are here.

I am delighted that Chris Roberts accepted my invitation to give a brief speech in support of my book. Chris wrote one of the Forewords to the book (the other two are written by Kate Swaffer [@KateSwaffer] and Beth Britton [@BethyB1886]).

Both Kate and Beth need no introduction for their campaigning about dementia. I strongly commend to you blogs by Kate (here) and Beth (here) which will begin to introduce you to their substantial output.

Somebody in the audience, based on substantial experience of looking after her mum with dementia, warned against the volume of policies and strategies. This is not the first time I’ve heard this criticism, which invariably starts with, “I don’t know the details of these policies, but I do know what happened with mum”. Such feedback really is gold-dust.

That’s because in forming our views about how to progress with dementia care, there’s a feeling that “people don’t do ‘macro'”. In other words, people are more concerned about their living standards or zero hour contracts than they are about the national GDP. A person might be more interested in his or her personal wellbeing as a person living with dementia or carer, than the design of the post-diagnostic support systems (howeverso defined).

Through having completed two books on the subject of wellbeing in dementia, I’ve decided that there is a place for an overview of the general landscape. This is hugely fortified by personal experiences of people living with their dementias. Kate Swaffer is ‘unusual’ in that she can make sense of her living with dementia in the context of a huge and varied personal and professional background.

To work out what might be the lived experience of a Frenchman, you might ask a Parisian for an account (but even then this is a highly personal account for that particular Frenchman in his time and place). Or you can learn about the history, language, culture, infrastructure or geography of France as background, and still entirely miss what is important to that Frenchman. But that is not to say the cultural back story is entirely irrelevant.

But back to my primary point.

I think the way of turning around the iceberg is for people living with dementia leading on policy, not being ‘involved’ or ‘engaged’ with it at a superficial level. I’ve been struck by the remarkable success of Wendy Mitchell (@WendyPMitchell) in promoting research in dementia, amongst many other projects; or Ken Howard (@KenHowardUK) and Dr Jennifer Bute in a alerting people to what it’s like to live with dementia; or Hilary Doxford, as a member of the World Dementia Council, in alerting people to what matters to people living with dementia in global policy. I thank them all for their contributions on Saturday.

One of the many things which were discussed ultimately in how the media cannot be entirely to be blamed for negative perceptions of living with dementia. Part of a solution is for people living with dementia to present positive stories (as indeed Chris Roberts – @mason4233 – provided in a recent Alzheimer’s Society magazine, or Ken Clasper – @Ken_Kencdid too.)

One mechanism for people living with dementia to participate in membership of national bodies. That’s why I am hoping that some individuals will put themselves forward (e.g. living with dementia or in a carers’ rôle) for the committee revising the NICE CG42 dementia guideline; applications close at 5 pm on 5 August 2015

I hope, if you haven’t already done so, engage with these issues at a personal level in some way. I think it’s an enormous honour and privilege to be allowed a window into people’s lives. Dementia for me is not a medical ‘problem'; it is an opportunity for us to show, socially, solidarity and justice.

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Kate did a separate – (much better in my personal view) – presentation. One slide from it says it all for me.


(“Living better with dementia” by me will be published in the UK on Jult 21st 2015, pre-order link here.)

‘Reasons to be cheerful’ part 4. Prof Sube Banerjee’s inaugural lecture in Brighton on living well with dementia.

For me the talk was like a badly needed holiday. I joked with Kay there, a colleague of Lisa, that it felt like a (happy) wedding reception.

Unknown to me, the title of Prof Banerjee’s talk is an allusion to this famous track from 1979 (when I was five). It’s “Reasons to be cheerful (part 3)” by Ian Drury and the Blockheads.

The Inaugural Lecture – Professor Sube Banerjee (“Professor of Dementia”), ‘Dementia: Reasons to be cheerful’ was held on 26 February, 2014, 6:30 pm – 8:30 pm, at Chowen Lecture Theatre, Brighton and Sussex Medical School, Sussex Campus. BN1 9PX. Details are here on the BSMS website.

I found Prof Banerjee to be a very engaging, ‘natural’ speaker.

I arrived with hours to spare, like how the late Baroness Thatcher was alleged to have done in turning up for funerals.


Brighton are very lucky to have him.

But his lecture was stellar – very humble, yet given with huge gravitas. Banerjee is one of the best lecturers of any academic rank in dementia I have ever seen in person.

Opening slide

Banerjee started off with a suitable ‘icebreaker’ joke – but the audience wasn’t at all nervous, as they all immediately warmed to him very much.


He is ‘quite a catch’. He is able to explain the complicated issues about English dementia policy in a way that is both accurate and engaging. Also, I have every confidence in his ability to attract further research funding for his various teaching and clinical initiatives in dementia for the future.

Most of all, I was particularly pleased as the narrative which he gave of English dementia policy, with regards to wellbeing, was not only accurate, but also achievable yet ambitious.

1979 was of course a big year.

SUBE1 1979

Prof Banerjee felt there were in fact many ‘reasons to be cheerful’, since Ian Drury’s remarkable track of 1979 (above), apparently issued on 20 July of that year.

Banerjee argued that the 1970s which had only given fruit to 209 papers, but things had improved ever since then.

It was the year of course Margaret Thatcher came to power on behalf of the Conservative Party.


In contrast, there have already been thousands of papers in the 2000s so far.

Banerjee also argued that “what we know is more likely to be true” which is possibly also true. However, I immediately reminisced of the famous paper in Science in 1982, “The cholinergic hypothesis of geriatric memory dysfunction”. This paper, many feel, lay the groundwork for the development of cholinesterase inhibitors such as donepezil (“Aricept”, fewer than twenty years later.

It is definitely true that ‘we are better at delineating the different forms of dementia’.

I prefer to talk of the value of people with dementia, but Banerjee presented the usual patter about the economic costs of dementia. Such stats almost invariably make it onto formal grant applications to do with dementia, to set the scene of this particular societal challenge.


I am of course a strong believer in this as my own PhD was in a new way to diagnose the behavioural variant of frontotemporal dementia. In this dementia, affecting mainly people in their 50s at onset, the behavioural and personality change noticed by friends and carers is quite marked. This is in contrast to a relative lack of memory of problems.

Not all dementias present with memory problems, and not all memory problems have a dementia as a root cause. I do happen to believe that this is still a major faultline in English dementia policy, which has repercussions of course for campaigns about ‘dementia awareness’.

A major drive in the national campaigns for England is targeted at destigmating persons with dementia, so that they are not subject to discrimination or prejudice.

The dementia friendship programmes have been particularly successful, and Banerjee correctly explained the global nature of the history of this initiative drive (from its “befriending” routes in Japan). Banerjee also gave an excellent example to do with language of dementia friendship in the elderly, which I had completely missed.

SUBE7 Japan friendships

Raising awareness of memory problems in dementia is though phenomenally important, as Alzheimer’s disease is currently thought to be the most prevalent form of dementia worldwide.

The prevalence of dementia may even have been falling in England in the last few decades to the success prevention of cardiovascular disease in primary care.

The interesting epidemiological question is whether this should have happened anyway. Anyway, it is certainly good news for the vascular dementias potentially.

That dementia is more than simply a global public health matter is self-evident.

I’m extremely happy Banerjee made reference to a document WHO/Alzheimers Disease International have given me permission to quote in my own book.


Banerjee presented a slide on the phenomenally successful public awareness campaign about memory.

SUBE12 Alz Soc campaign

Nonetheless, Banerjee did speak later passionately about the development of the Croydon memory services model for improving quality of life for persons with mild to moderate dementia.

In developing his narrative about ‘living well with dementia’, Banerjee acknowledged at the outset that the person is what matters at dementia. He specifically said it’s about what a person can do rather than what he cannot do, which is in keeping to my entire philosophy about living well with dementia.

And how do we know if what we’re doing is of any help? Banerjee has been instrumental in producing, with his research teams, acceptable and validated methods for measuring quality of life in dementia.

The DEMQOL work has been extremely helpful here, and I’m happy Banerjee made a point of signposting this interesting area of ongoing practice-oriented research work.

Banerjee of course did refer to “the usual suspects” – i.e. things you would have expected him to have spoken about, such as the National Dementia Strategy (2009) which he was instrumental in designing at the time: this strategy was called “Living well with dementia”.

SUBE4 National dementia strategy

“I’m showing you this slide BECAUSE I want YOU to realise it IS complicated”, mused Banerjee at the objectives of the current English dementia policy.

SUBE8 Dementia national strategy objectives

I asked Banerjee what he felt the appropriate ‘ingredients’ of the new strategy for dementia might be – how he would reconcile the balance between ‘cure’ and ‘care’ – “and of course, the answer is both”, he said to me wryly.

Banerjee acknowledged, which I was massively pleased about, the current ‘barriers to care’ in this jurisdiction (including the known issues about the “timely diagnosis of dementia”.

Clearly the provision at the acute end of dementia care is going to have to come under greater scrutiny.

SUBE11 Barriers to care

I increasingly have felt distinctly underwhelmed by the “medical model”, and in particular the repercussions of this medicalisation of dementia as to how grassroots supporters attempt to raise monies for dementia.

That certain antidepressants can have a lack of effect in dementia – Banerjee’s work – worries me.

That antipsychotics can have a dangerous and destructive effect for persons with dementia – also Banerjee’s work – also clearly worries me.

I am of course very proud that Prof Alistair Burns is currently reading my book focused on the interaction between the person and the environment in dementia.

Alistair Burns Shibley Rahman email

And of course I’m ecstatic that Lisa Rodrigues and Prof Sube Banerjee signed my book : a real honour for me.

book photo

I signed Lisa’s book which was most likely not as exciting for her! X

There was a great atmosphere afterwards: the little chocolate brownies were outstanding!

Being an antisocial bastard, I didn’t mingle.


BUT I had a brilliant chat with Lucy Jane Marsters (@lucyjmarsters) who gave me a little bag of ‘Dementia is my business’ badges, very thoughtfully.

SUBE 13 Badges

We both spoke about Charmaine Hardy. Charmaine was missed (and was at home, devoted to G.)

I’ve always felt that Charmaine is a top member of our community.

This apparently is a ‘Delphinium’.


A reason not to be cheerful was leaving Brighton, for many personal reasons for me.

Upset to be leaving

Not even the Shard was a ‘reason to be cheerful’, particularly.

The Shard

But when I came back, I found out that ‘Living well with dementia’ is to be a core part of the new English dementia policy.

I have, of course, just published a whole book about it.

The photograph of the poppy was of course taken by Charmaine Hardy: I have such great feedback on that one poppy in particular!

Book cover

And what does the future hold?

Over to Prof Banerjee…

My book launch of “Living well with dementia” – special guest messages from Peter, Kate and Norman

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.

Book cover

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.

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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.

Kate Swaffer (@KateSwaffer)

Norman McNamara (@norrms)

Dr Peter Gordon (@peterDLROW)

Living Well with Dementia from omphalos on Vimeo


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

Sample chapter

“What is living well?” 

The slides of the presentations


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.

‘Living well with dementia’ – the launch of Dr Shibley Rahman’s ground-breaking book

In the shoes of … | Dr Shibley Rahman. An intriguing and unique academic