Stigma in dementia poses crucial questions for dementia friendly communities

The literature on stigma is comprehensive.

But Kate Swaffer added to it beautifully in the journal ‘Dementia’, with an article today – on open access – entitled “Dementia: Stigma, language and dementia friendly”.

Kate refers to a blogpost by Ken Clasper, a Dementia Friends Champion, which asks, sensibly, what we are trying to achieve with more ‘awareness’.


And if you scroll down to the end of this tour de force on stigma and dementia, you’ll see exactly why Kate is able to opine with such legitimacy and authority.

Kate S

I conceded a long time ago – in March 2014, in fact – on this blog that the policy plank of ‘dementia friendly communities’ is an incredibly complex one.

The discussion of stigma seems to be one of perpetuity. We’ve seen numerous attempts at it, including the original work of Goffman (1963) on stigma and ‘spoiled identity’.

It’s been re-incarnated as a Royal College of Psychiatrists campaign on stigma.

This morning there was another bite of the cherry.

The report, New perspectives and approaches to understanding dementia and stigma, published by the think tank International Longevity Centre UK (ILC-UK) is produced by the MRC, Alzheimer’s Research UK, and Alzheimer’s Society; it was also supported by Pfizer.

I’ve thought how I could possibly respond to Kate. And I can’t, as Kate is in every sense of the word an ‘expert’.

But it did get me thinking.

It got me thinking of the happy times I had with Chris and Jayne last week at the Alzheimer Europe conference in the city of my birth in Glasgow.

‘There’s more to the person than the diagnosis” is one of the key five messages of ‘Dementia Friends’, an initiative from the Alzheimer’s Society predominantly (and Public Health England). This is mirrored in a tweet by Chris from this morning.


Chris is also a “Dementia Friends Champion“, and lives well with dementia.

Last week, I attended a brilliant all-day workshop chaired by Karishma Chandaria, Dementia Friendly Communities manager for the Alzheimer’s Society. The progress which has been made on this policy plank is substantial, and I am certain that the next Government will wish to support this policy initiative in the English for 2015-20.


It is stated clearly in Simon Stevens’ “Five Year Plan” for NHS England.

5 year plan

It is a core thread of the Prime Minister’s Dementia Challenge.

And the ‘coalition of the good’ has seen the dementia friendly communities policy plank develop drawing on work from ‘Innovations in dementia’ and the Joseph Rowntree Foundation.

And to give the Alzheimer’s Society credit, where it is certainly due, there has been launched an open consultation for a British Code of Practice (currently ongoing), to which anybody can contribute.

But this code of practice does, again, have the potential to be very divisive. It might be painful to make dementia friendly communities, such as the large one in Torbay, ‘fit into this box’.

Torbay in many ways is a beacon of innovation for integration between NHS and care. There is genuine “community bind”, with citizens, shopkeepers, transport, police, for example, contributing.

The article on the BBC website about Norman McNamara (January 2012) predates the Prime Minister’s Dementia Challenge, (which started in March 2012.)

Any top down way of making bottom-up social groups ‘conform’ will be hugely problematic in the implementation of this approach to dementia-friendly communities, potentially.

The methodology of dementia friendly communities has to be truly inclusive: it is all or nothing.

I agree with Kate, and like her I wish to avoid protracted circular definitions of ‘stigma’. For me, I recognise stigma when you see it, like how the Supreme Court of the US recognises erotica and pornography as per Jacobellis v Ohio [1964].

It is possibly easier to define stigma by its sequelae, such as avoiding wishing to talk about dementia in polite conversation, or not wishing to see your GP about possible symptoms of a dementia in its early stages, or not wanting to socialise with people with dementia who happen to be in your family.

We know these are real phenomena, as demonstrated, for example, by the loneliness of many people on receiving a diagnosis of possible dementia.

And we know stigma can harbour deep-seated irrational prejudice, like the incorrect notion that dementia is somehow contagious like a ‘superbug’.

Stigma can be exhibited in pretty nasty ways in language: such as “snap out of it” or “victim”.

My discussion of whether people living with dementia are ‘sufferers’  tends to go round and round in circles with people who disagree with me.

Suffice to say, I agree it is possible for a person living with dementia, such as a person who has received a diagnosis of Lewy body dementia and who has to put up with terrible “night terrors” and exhaustion the following day.

I think if you live independently, but with full insight into your symptoms, it can be exasperating. I have never been in that position though, and it would be invidious of me to second-guess.

I think if you are close to someone in the latter stages of dementia, you can suffer.

But I’ve written about this all, indeed on this blog, before here.

The only thing that is new is Peanuts’ cartoon (original citation here).

Peanuts on suffering

In that workshop, I also sat through Joy and Tone Watson’s brilliant “Dementia Friends” session. Joy lives with dementia. And their session was brilliant.

This was the final ‘exhibit’.


I attended a special group session on stigma with Toby Williamson from the Mental Health Foundation during that day. In that session, it was mentioned that ‘rôle models’ of people living well with dementia might help to break down stigma.

Or maybe guidance for the media might help? One cannot help wondering if an article such as in the Daily Mail today might actually put off people from seeking a diagnosis of dementia (completely unintentionally).

But I did bring up something on my mind.

“Stigmata” literally means signs.

But dementia can be, like other disabilities, quite invisible.

Somebody might have insidious change in personality and behaviour, noticed by somebody closest to him or her, with no obvious changes in cognition (nor indeed in investigations).

I showed this in my paper published in Brain in 1999, currently also in the Oxford Textbook of Medicine.

The condition I refer to is in fact one of the more prevalent causes of dementia in the younger age group, called the “behavioural variant of frontotemporal dementia“.

If the signs are ‘visible’, then you are obliged legally to make reasonable adjustments for any disability. In England, this includes dementia under the guidance to the Equality Act (2010).

As Toby Williamson says, if you’re obliged to build a ramp for somebody in a wheelchair for a place of work, there’s an equal obligation to produce adequate signage for people who have navigation problems as a result of a dementia such as dementia of the Alzheimer’s type.

There are reams and reams of evidence on equality and the built environment (for example the Design Council or Commission for Architecture and the Built Environment).

I personally think it’s brilliant you can go into certain shops, and the customer-facing staff will, potentially, be able to recognise if a person does need time and space to pay for items.

This is also been tackled in the Scottish jurisdiction through Alzheimer Scotland.

Also, corporate lawyers should be advising large employers about the scope for unfair dismissal claims by people dismissed as they are about to arrive at a diagnosis of dementia (particularly young onset dementia).

The timeline is roughly this. Somebody has health problems – he or she is invited to leave and given a pay off – these health problems turn out to be a diagnosis of probable dementia – by this time the dismissal is not unfair.

I feel confident the ‘dementia friendly communities’ policy strand in England, and across other jurisdictions, is here to stay. I share, though, Kate’s concerns that about the relative ease with which this policy has lifted off, say, compared to how one might feel about ‘gay friendly communities’ or ‘black friendly communities’. One has to be extremely careful about any policy plank which alerts people to divisions, “them against us”.

This is what I know best as the “don’t think of elephants phenomenon” and then you think of elephants.

This policy, anyway, currently has huge momentum. Marc Wortmann is  currently Executive Director of Alzheimer’s Disease International (ADI), the organisation providing a global voice for dementia and the founder of World Alzheimer’s Month. Wortmann has been instrumental in propelling dementia friendly communities to the foreground of world policy.

But, in firing up ‘dementia friendly communities’ (a term which I think is sub-optimal’), v 2.0, there is plenty of time to get it right.

My research on #G8dementia and on markets for the @AlzheimerEurope conference 2014

I will be presenting two posters on attitudes amongst the general public towards the ‘G8 dementia’ event as it was then.

I was aghast that out of 75 web articles that the phrase “Living well with dementia” wasn’t used once.

There was a huge bias towards the medical model of dementia. Respondents overwhelmingly felt that the major beneficiaries of that event were large charities, politicians and Pharma, and the people who benefited least were the actual persons living with dementia and caregivers.



I am honoured to give one of the oral presentations.

Information asymmetry between insurance provider and person is a big source of problems. I will showing preliminary data that the two phenomena “moral hazard” and “adverse selection” are likely to be demonstrated in attitudes of people who had received  a genetic diagnosis of dementia.

However, I will be raising awareness of the danger of a policy based purely on genetic risk and private insurance; without safeguards against genetic discrimination, such a policy would be likely massively to disadvantage individuals with a higher family-based risk of dementia.

Plate 1

Plate 2

Plate 3 Plate 3

Plate 4


I am hugely grateful to my Twitter followers for taking part in my online surveys.

I am, finally, hugely grateful to the individuals living with dementia and caregivers, as well as other members of the public, who continue to drive the work that I do in dementia.

Please take part in my survey on the G8 Dementia Summit 2013

It’s always struck me that there has never been much feedback about what the general public thought about the G8 dementia summit (“Summit”) held last year.

Information about this one-day conference is given here.

The Summit was being held at Lancaster House in London on 11 December 2013. Delegates include G8 Ministers, researchers, pharmaceutical companies and charities.

The summit aimed to agree what can be done to:

  • stimulate greater investment and innovation in dementia research
  • improve the prevention and treatment of dementia
  • improve quality of life for people with dementia

Even if you saw none of the coverage to do with this meeting, I’d be very grateful if you could complete my brief online survey about the Summit. It takes a few minutes to fill in, and contains only multiple choice questions.

ballot box

I’d be grateful if you wish to do this survey

if you’re an adult without a diagnosis of a dementia USING THIS LINK.


I’d be grateful if you wish to do this survey

if you’re a person with a diagnosis of dementia, with full legal capacity USING THIS LINK.

All responses are completely anonymous.

Tomorrow, hell freezes over as I attend my first conference on dementia since 1999

I have famously said, “All hell will freeze over before I attend a conference in dementia”.

freezing hell

Well, actually, tomorrow is the day that theoretically all hell freezes over.

I will be taking the train in the afternoon to go from London Euston to Glasgow Central.

It is in fact a very highly emotional journey for me. I was born in Glasgow on June 18th 1974. I am very loyal to my Scottish friends, as I have very happy memories of Scottish people. I remember thinking, at the age of five, how relatively unfriendly people in London were, when I moved down South.

I have been meaning up with Dr Peter Gordon for ages for this. Peter’s to be found on  Twitter as @PeterDLROW.  If you’re wondering “why DLROW?”, the answer is simple.

About 20 years ago, I used to administer myself the Folstein Mini Mental State Examination (MMSE) and one of the questions famously is “Spell the word “WORLD” backwards”. The full (abbreviated) MMSE is here.

For a few weeks, I have been meaning to take a break from tradition of usual slagging of conferences of dementia, which I’ve disparagingly called ‘trade fairs’, mainly because I’ve never been invited to them. This came to a head recently when I was fuming that nobody considered me good enough to invite me to #NHS #InvExpo14 (see blogpost here), and I was subjected to a torrent of tweets saying they were having such a nice time there.

My stance of railing against every single exhibition was scuppered when this conference in Glasgow came up. As per usual, nobody bothered telling me they were going. I only found out by complete accident. The organisers have even allowed me to show my book to everyone out of goodwill as they feel the book promotes research into wellbeing in dementia (which it does). I’ll be giving out my survey of #G8dementia to about 130 other academics, which asks searching questions about their perspective of the perception and identity of the #G8dementia conference held last year.

It’s known I have a longstanding interest in dementia. I’ve written a book called ‘Living well with dementia’, which is not easy for me to promote at all. I am simply lucky that I have been blessed by good friends such as @WhoseShoes who’ve been battling for me against all the odds. @WhoseShoes’ incredible biography on the day of launch is here. Indeed, @KateSwaffer and @norrms have been very supportive too, which is why I continue to hold the untenable thought that my book will one day influence policy.

But my friends have been AMAZING. This was @dragonmisery‘s mention of my book  on the influential ‘Dementia Challengers’ website about recommended  books. And @BethyB1886 has been wonderful too – here’s my mention.

In fact, I’ve been working on dementia long before CEOs or directors of research in dementia charities appeared on the scene. I did my Ph.D. in Cambridge, and my Brain paper in Brain is appreciated to be a seminal contribution to the field (and is in the current Oxford Textbook of Medicine).


I think the world of Prof Alistair Burns (the clinical lead for dementia in England). I have given Prof Burns and Prof Sube Banerjee, the previous leader in dementia and an expert in wellbeing, a copy of my book. In fact, I am delighted that Prof Martin Rossor is intending to read my book too. Martin, for anyone of us lucky enough to have across his work, is simply outstanding. I am thrilled he has been appointed by the Chief Medical Officer as NIHR Director for Dementia Research.

I have become very pro-patient, particularly out of my disillusionment with what I perceive to be a failure of the medical model for people with dementia. I think at worst people end up with a label, attend outpatients every few months to get told whether their brain scans or cognitive testing have changed, and the medications have little efficacy for many in treating symptoms or altering progression. It was on seeing how my late father had to cope with excruciating back pain that I had an ‘epiphany moment’ of wishing to write a book which produced a synthesis of the notion of living well with dementia.

It is in fact a very far cry from my original published work on the drug treatments of dementia in prestigious international peer-reviewed journals: methylphenidate (ritalin) published in Nature Neuropsychology, and paroxetine (seroxat) published in Psychopharmacology, for patients with frontal dementia. But I’ve become acutely aware of false claims from Big Pharma about dementia, and the hysterical reporting of dementia by some in the light of  the Prime Minister’s Dementia Challenge. I remember reviewing the failures of these treatments as far back as 1999 for a chapter for a multi-author book edited by Prof John Hodges on early onset dementia. And the promises from Big Pharma and the dementia fundraising charities have not changed one jot.

So, now, I am finally feeling inspired to share some of my academic passion about dementia with others. I have had to conceal this passion for so long, but I think things came to a head when I witnessed people whose backgrounds were not in medicine, nursing or dementia making such a Horlicks in basic facts concerning dementia.

Still I suppose we’re all #inthistogether. But to varying depths.

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?

The real influencers of English dementia policy aside from #G8dementia

top 100

In a rather strange Stakhanovite way, certain health magazines are strangely obsessed with the fetish of the ‘top 100′. I am as such not a great advocate of, “Everybody has won, and all must have prizes.” immortalised by Chapter 3 of Lewis Carroll’s Alice’s Adventures in Wonderland, but as someone who has devoted all of his entire life to dementia academia I do find somewhat curious (to put it politely) the judgments of those outside the dementia field about who are most influential to other people outside the academic dementia field, in their “world of dementia”. However, corporates need ‘symbols’ of their ‘success’ to attract inward attention and investment, so I’ll simply leave them to their own pathetic whims.

The issue of who “influences” a given network is currently of huge interest in modern ‘actor network theory’ (ANT). ANT was first developed at the Centre de Sociologie de l’Innovation of the École nationale supérieure des mines de Paris in the early 1980s by staff and visitors. Network thinking has contributed a number of important insights about social power. Perhaps most importantly, the network approach emphasises that power is inherently relational. An individual does not have power in the abstract, they have power because they can dominate others.

Network analysts often describe the way that an “actor” is embedded in a relational network as imposing constraints on the actor, and offering the actor opportunities. Actors that face fewer constraints, and have more opportunities than others are in “favourable structural positions”. Having a favoured position means that an actor may extract better bargains in exchanges, have greater influence, and that the actor will be a focus for deference and attention from those in less favoured positions. However, a key deference is that the people mentioned below do not consider themselves as requiring deference or attention. Their devotion to the living with the dementias is crystal clear. There can of course be “inhibitors”. We all know who they are: they actively stifle the activities of some members of the community.

There are many laboratories around the world which publish widely in the world on cognitive and behavioural neurology: how people think, and the brain processes involved. Of the off top of my head, I can think of Prof Bruce Miller at the University of California and San Francisco, Prof Martin Rossor at the National Hospital for Neurology and Neurosurgery and University of London (UK), Prof Facundo Manes at Favorolo Hospital, Argentina, Prof David Neary at the University of Manchester (UK), and Prof John Hodges of NeuRA, Australia.

There are of course people in fields to do with living well, for example defining wellbeing, measuring wellbeing, assistive technology, ambient assisted living, design of the home, design of the ward, and design of the built environment. Research in all these areas in English dementia policy is currently extremely important. I would go so far as to say that the people successfully working in, and publishing on, these areas around the world are much more important than the health ministers and corporate representatives who spoke at the ‘G8 dementia’ conference last week.

One person who does deserve a special mention though, even though all must have possibly have prizes, is Beth Britton. Beth’s interview captured attention at last week’s #G8dementia, and rightly so. Beth’s father had vascular dementia for 19 years. It began when Beth was around 12 years old, and would go on to dominate Beth’s life in her teens and twenties. Her father, whom she clearly adores, went for ten years without a diagnosis and he then spent none years in three different care homes. He passed away in April 2012, aged 85.

Norman McNamara from Devon was diagnosed with dementia a few years ago when he was just 50. After his diagnosis, Norman, from Torquay, began blogging online about his experiences and during a phone call with a friend he had the idea of organising the first Dementia Awareness Day on 17 September 2011. Norman particularly is really helpful in offering insights about what it’s like to ‘live with dementia’. In his recent blogpost, for example, he talks about how he doesn’t wish to be seen as being on some ‘journey’. He talks poignantly about how he is ‘living with’ dementia, not ‘dying from’ dementia, stating correctly that we are all in fact dying if one took this approach.

Kim Pennock, from Thornton-le-Dale, gave up her part-time job at Beck Isle Museum to help care for her mother who has the dementia of the Alzheimer type. Kim has become one of only 50 worldwide ambassadors for a pioneering new project to make communities safer for people with dementia. When her mother was first diagnosed, Kim said the family found it almost impossible to find the information and help they needed. Conversely, Lee set up the incredible ‘Dementia Challengers’ website to help people with dementia and the carers the right info they need to help them to live well.

In Australia, Kate Swaffer is committed to meaningful dialogue with a wide range of stakeholders about the critical issues impacting a person living with a diagnosis of dementia and their loved ones. When a person with dementia ‘comes out’ about their diagnosis, and openly admits they are living with the symptoms of, and diagnosis of dementia, there are a number of reactions and responses. Kate is one of the world’s most powerful advocates for dementia and the elderly, living well with a diagnosis of dementia; and she describes herself on Twitter (@KateSwaffer) as an “author, poet, blogger, and always trying to be a nice person”.

Back in the UK, Fiona Phillips speaks directly from her first hand experience as her mother had Alzheimer’s until her death in May 2006 and her father, who was diagnosed with the disease shortly afterwards, died in February 2012. In January 2009, Fiona presented Mum, Dad, Alzheimer’s and Me, an incredibly moving “Dispatches” documentary on Channel 4, featuring Fiona talking candidly about her struggles caring for both her parents during their respective illnesses and investigating the difficulties faced by people with the dementia of the Alzheimer type, and their families to get adequate care and support. Fiona has written a book “Before I Forget”, about her relationship with her parents and their dementia.

There are certain people who do understand particular areas of dementia policy and education. Lucy Jane Marsters is one such example, being a specialist nurse. Gill Phillips has also been pivotal in raising awarneness, generally, of the significant to personal-centred approaches in questioning quite deeply entrenched assumptions. There are also some brilliant people in innovations, such as Mike Clark, Prof Andrew Sixsmith and Prof Roger Orpwood in telemedicine and telehealth. Activities and healthy living communities are also extremely important; despite challenges in funding, like many in the dementia world, Simona Florio has been utterly resolute in supporting members of the excellent Healthy Living Club in Stockwell.

For years, magnificent Scot Tommy Whitelaw travelled the world running global merchandising operations for the Spice Girls, Kylie and U2. However, over the past few years he had become a fulltime carer my late mum, Joan, who had vascular dementia. His motivation as a carer came from the love he had for his own mum, and his experience has shown me just how tough it is to live with dementia and how many struggles it can bring. For the last year, he has been collecting carer’s life stories to raise awareness. Tommy is now working on The Dementia Carers Voices project with the Health and Social Care Alliance which will build on my ‘Tommy on Tour’ campaign by engaging with carers, collecting their life stories and raise awareness amongst health and social care professionals on both dementia and caring.

Caring for someone with dementia clearly infuses some with an incredible passion for the subject which you simply is hard to match. Sally Marciano has talked openly about supporting her mum supporting her father who later died of a dementia. She has talked openly about how the system didn’t work properly, but is very constructive about raising awareness and educational skills in the healthcare sector.

In March 2013, filmmakers and scientists come together at an event to increase the public understanding of dementia. A series of short films about dementia was presented by James Murray-White, will precede a discussion with researchers from the University of Bristol and other institutions supported by “Alzheimers BRACE”, a local charity that funds research into Alzheimer’s disease and other forms of dementia. James’ activities include being a freelance writer, journalist, reviewer, and filmmaker. James was in fact featured in last week’s #G8dementia media coverage.

Sarah Reed’s mother had Alzheimer’s disease for ten years. As a result of this, she became passionate about the quality of life of older people, especially those with dementia.

 She left a design career to found “Many Happy Returns” in order to innovate, research and develop evidence-based products to connect young and old, especially those with dementia, more meaningfully. Her goal has to change the experience of dementia for those who have it for the better, by persuading care organisations and carers everywhere that good care counts for nothing without good communication – and then helping them to deliver it.

And of course there are some brilliant influencers in the world of medicine who don’t simply regurgitate the copy fed to them. Dr Peter Gordon has produced a number of original films and articles about the ethics of the diagnosis, particularly the need for a ‘timely’ rather ‘early’ diagnosis, and potential conflicts of interest between the medical profession and the pharmaceutical industry. Dr Martin Brunet has likewise become massively influential in articulating the debate, especially, from the medical profession’s perspective of a policy ‘target’ to increase diagnosis rates. While Martin’s work is not easy, his perspective and substantial experience as a GP is invaluable, particularly in redressing other people’s motives which can too easily be too motivated by surplus and profit.

And, of course, a top influencer, even though ‘all shall have prizes’, is Prof Alistair Burns. Alistair is the clinical lead for dementia in England, and has a highly influential position in NHS England. Alistair clearly has a number of different stakeholders with which he needs to have a fair legitimate discussion about English policy. He has nonetheless steered the policy through rather turbulent times. As a senior academic and person within higher education, and someone who clearly has a very ‘human perspective’ too, his contribution to English dementia policy has been much valued and much appreciated.

Actually, I’m being totally ingenious. Most of us are actually one big happy family in the network I’m in. We have our disagreements, but we value each other. We don’t inhibit one another (which is what can go wrong with networks). For a list of #dementiachallengers, please go to the list in the top right corner of this blog. You’ll see for example Charmaine Hardy, who cares for, and adores, her husband who has a very rare form of dementia called primary progressive aphasia. Though having a well deserved break for once in Norway, for once, you can catch her on Twitter!

The #G8Dementia Summit – a curious lack of a person-centred approach in the research strategy

Trade fair for blog

David Cameron should be given credit for making ‘dementia’ the topic for discussion of the G8 on 11th December 2013. But the event runs the risk of being a trade fair for the pharmaceutical industry, becoming increasingly desperate to prove their worth in dementia and society.

However, it is widely acknowledged that cholinesterase inhibitors, drugs that boost levels of acetylcholine in the brain to improve attention and memory, have a modest effect if that in the majority of patients with early dementia of the Alzheimer type (‘dementia of the Alzheimer type’). There is no robust evidence that they slow down disease progression in humans from human studies of patients.

Many senior academic experts feel conversely that there has been insufficient attention put into interventions that actually do help people to live well with DAT. Such interventions include improving the design of the home, design of the built environment (including signage and pavements), non-statutory advocacy, dementia-friendly communities, assistive technology and ambient living innovations.

On Wednesday 4th December 2013, a ‘research summit’ was held for the press for “research into dementia”. The main focus of this research summit was how can one best predict who will get dementia or when, do we even know what causes dementia yet, what “cures” are there in the pipeline, what can be done to prevent dementia, what obstacles are pharmacological researchers facing, does Pharma have sufficient resources, and what needs to be done to make the Dementia Summit a success.

The focus of this ‘summit’ into ‘research into dementia’ was not living well with dementia, which is a gobsmacking tragedy for all those involved in promoting living well with dementia.

What is overwhelmingly absent is a ‘person centred approach’ which has been a major force for good in contemporary dementia care in England.

The panel members, according to the brief, were: Dr Doug Brown, Director of Research and Development, Alzheimer’s Society; Prof Nick Fox, Professor of Neurology, MRC Senior Clinical Fellow, Institute of Neurology, University College London; Prof Simon Lovestone, Professor of Old Age Psychiatry, Director of NIHR Biomedical Research Centre for Mental Health at the South London and Maudsley NHS Trust and Institute of Psychiatry, King’s College London and Lead for the Translational Research Collaboration in Dementia (a network of 6 centres established by the NIHR); Prof Peter Passmore, Professor of Old Age Psychiatry, Queen’s College Belfast and Lead for Dementia for The British Geriatrics Society; and Dr Eric Karran, Director of Research, Alzheimer’s Research UK.

To show how little there was on wellbeing, and discussing innovative ways to allow people to live well with dementia, here’s the official write up from the BMJ this week:

“Nick Fox, professor of neurology and a Medical Research Council senior clinical fellow at the Institute of Neurology at University College London, said, “We should be asking the G8 collectively to double the research spending on dementia within five years.

“And I think there is a lovely equitable way of looking at this. We ask the G8 countries to commit 1% of their dementia costs to add another doubling of research spending within 10 years.”

Brown said the aims of the research were to enable more accurate and timely diagnosis of dementia; to create disease modifying treatment to try to stop, slow, or reverse the condition; and to find drugs to treat the symptoms. Most importantly, he said, researchers needed to understand how dementia developed to enable the risk to be reduced and onset of dementia to be prevented or at the very least delayed. “If we could delay the onset by five years we could probably cut the numbers of [people with] dementia in half,” he said.

Fox said that past trials of treatments had concentrated on people with symptoms of the disease, which was “like trialling chemotherapy when people are already in a hospice.” Now, he said, treatments were beginning to be tested in people who were at higher risk of dementia because they had a family history or other genetic risk factors or because scans had shown early features of the disease.

Scans and other techniques could then be used to track the effects of treatment before symptoms appeared. “Only if we can identify people where we can see whether our therapies are having an effect will we ever make progress,” Fox said.

Peter Passmore, professor of old age psychiatry at Queen’s College Belfast and the British Geriatrics Society’s lead on dementia, said that as more was known about the mechanism of dementia, researchers were looking at drugs licensed for other conditions that might impinge on those mechanisms. “That’s cheaper drug development: those drugs are off patent,” he said.”

Many thanks to @sam4wong for sharing this with us on Twitter this morning.

Sadly, this representation of research for #G8dementia has taken on more of an appearance of a corporate international trade fair, which is a crying shame. This is, ironically, in the week that the World Trade Organization has apparently agreed its first-ever global deal aimed at boosting commerce.

A trade fair (trade show, trade exhibition or expo) is an exhibition organised so that companies in a specific industry can showcase and demonstrate their latest products, service, study activities of rivals and examine recent market trends and opportunities. In contrast to consumer fairs, only some trade fairs are open to the public, while others can only be attended by company representatives (members of the trade, e.g. professionals) and members of the press, therefore trade shows are classified as either “Public” or “Trade Only”. However, the G8 next week would be at considerable risk of being hijacked by market forces, if it were not for the valiant efforts of the Department of Health and people who have devoted their lives to raising dementia awareness too. Trade fairs are helpful for marketing of products to a wider audience.

James Murray-White (@sky_larking) is a film-maker, and campaigns perennially for raising dementia awareness. James announced yesterday that he was proud to be part of a central network of dementia ‘activists’ on Twitter, but had just reported on the same media network that he had recently been refused ‘press accreditation’ for #G8dementia.

Earlier this year, filmmakers and scientists came together at this event to increase the public understanding of dementia. This event comprised series of short films about dementia, curated by Murray-White, will precede a discussion with researchers from the University of Bristol and other institutions supported by @AlzheimersBRACE, a local charity that funds research into Alzheimer’s disease and other forms of dementia. Panel speakers included: Professor Seth Love (Professor of Neuropathology); Laura Palmer (South West Dementia Brain Bank Manager); James Murray-White (filmmaker).

However, all is not lost, by any means.  Beth Britton (@BethyB1886) will be participating in a short film for #G8dementia. Prof Alistair Burns (@ABurns1907), the Clinical Lead for Dementia in England, has written of Britton:

“Beth Britton has been a breath of fresh air in the discussions and debates around dementia. She brings a clarity of thought and originality of ideas which I have always found very refreshing and helpful when considerations and discussions of the importance of people with dementia and their carers are concerned. She has a unique writing style and a gifted ability to convey ideas and experiences”

Beth is one of the U.K.’s leading campaigners on dementia. Her experience of supporting her father, who was living with dementia, and her professional background, give her unparalleled insight into effective ways of campaigning for change, it is widely felt.

There are people who are simply interested in individuals with people  – the person not the drug. For example, Lucy Jane Masters (@lucyjmasters) is a dementia nurse specialist, advocating for change, an educator, and primarily passionate about that person with dementia and those who care for him or her.

Alistair has for long time emphasised the importance of “a timely diagnosis”, rather than an “early diagnosis”. This is very much in keeping with the notion that the potential diagnosis should be offered at a time personally appropriate to any particular individual. Alistair also believes, in his rôle as part of NHS England, that there should be a reasonable level of “post-diagnosis support”. Academics generally agree that the tenure of Alistair as the National Lead for Dementia in England has been a very successful experience for all involved.

There are few people as inspirational too as Norman McNamara, who has campaigned tirelessly to dissolve the stigma which can surround dementia. He can be very easily found on Twitter for example (@NormanMcNamara). McNamara has written poignantly about his own personal experiences of ‘living with dementia’.

Sally (@nursemaiden) was a senior nurse, but likewise now promotes heavily wellbeing in dementia, with her father with dementia of the Alzheimer type having passed away on 1st September 2012.

And it truly is an international ‘effort': Kate Swaffer (@KateSwaffer) in Australia – who has just met up with Gill Phillips who advocates ‘paths to personalisation’, has written brilliantly about her experiences of the dementia diagnosis.

Indeed, it would not be hyperbolic to say that many people have given up much free time into the world of the dementias, as a vocation. Lee (@dragonmisery) has produced an incredible information provision website for carers of people with dementia, and this has advanced the policy plank promoting choice and control in wellbeing.

Twitter has been particularly successful at giving people a voice at last. Charmaine Hardy (@charbhardy) is one of the most prominent members of this very close community. Her profile reveals that her husband, whom she adores, has a rare dementia known as primary progressive aphasia. Anyone following Charmaine knows exactly the emotional intensity of someone caring for somebody with dementia.

Likewise, Thomas Whitelaw (@TommyNTour) has literally been ‘on tour’ talking with amazing authentic emotion, affectionately, about his mother, Joan Whitelaw, who had been living with dementia.

So why such a focus on pharmacology?

Why so little on ‘person centred care’?

This glaring omission of person centred care in #G8 dementia apart from representations below is utterly embarrassing and humilating for the thousands of researchers and practitioners who work in this area. @MrDarrenGormley‘s award-winning blog is a most useful introduction to this area.

And, although deeply enmeshed in the English health policy which has sometimes been far from controversy, the efforts of the Department of Health itself have been most impressive.

Anna Hepburn (@AnnaHepburnDH) is Digital Communications Manager for Social Care at the Department of Health. Anna is well known to be genuinely interested in the views of people living with dementia, and those closest to them.

Anna remarked recently,

“When people with dementia and their partners were invited to the Department of Health recently, there was one simple statement that stuck in my mind: “We are still people”. It came as a bit of a shock coming from one of the articulate and funny people gathered round the table. But it says it all about the misconceptions and stigma surrounding dementia.”

Anna Hepburn continued,

“On 18 November, I had the privilege of meeting more people with dementia, as well as current and former carers of people with dementia, who came to London to make short films to show at the G8 dementia summit. This is so we can bring their voices – and the reality of dementia – into the room on 11 December.”

But as a result of the research summit and other efforts from the media and select researchers, the headlines have been rather sensational and sadly all too predictable, viz:

Unprecedented breakthrough in the hunt for a dementia drug within ‘five years'” (Independent)

“G8 ministers warned to prepare for global dementia ‘time bomb’” (Times)

Monthly injection to prevent Alzheimer’s in five years” (Telegraph)

Jab to slow Alzheimer’s ‘is just five years away': Monthly treatment could be given a decade before symptoms” (Daily Mail)

Dementia cases ‘set to treble worldwide’ by 2050” (BBC)

The last one has been the most difficult for real experts  in the research community with real knowledge of the problems facing international research.

On the other hand, Mr Jeremy Hughes, chief executive of the UK’s Alzheimer’s Society, according to that final BBC report cited above, said: “Dementia is fast becoming the biggest health and social care challenge of this generation.”

“We must tackle dementia now, for those currently living with the condition across the world and for those millions who will develop dementia in the future.”

There has been much media interest in improving diagnosis rates in England, driven more by the dementia charities than public health physicians or GPs.  Whilst undoubtedly a ‘cure’ for dementia would be wonderful, it is rarely reported that dementia rates are in fact considered to be dropping.  Medical doctors such as Dr Peter Gordon (@PeterDLROW; a NHS Consultant Psychiatrist) and Dr Martin Brunet (@DocMartin68; a NHS General Practitioner) have been invaluable as “thought leaders” in forging ahead with an evidence-based approach to this complex issue, cutting through the media garb and spin (and promotional copy).

Very recently in the prestigious New England Journal of Medicine, it was reported that, “Although demographics will drive an increase in the number of dementia cases, recent reports — generally based on population-based community studies or survey data — point to declining age-specific prevalence or incidence rates among people born later in the first half of the 20th century”

You can follow live digital coverage of the G8 dementia summit on the Dementia Challenge site on 11 December 2013. Well done to all those involved, particularly the grassroots campaigners, Anna Hepburn, and the Department of Health!