I am going to give four free public lectures on dementia in Holborn, London

It is with great pleasure that I can announce that Prof Carl Lygo and Prof Peter Crisp have given me permission to host four free public lectures on dementia at the BPP Law School, London.

Lecture Theatre Law School 
Wed  June 10th   6 pm – 7 pm : session #l1
Thu July 23rd  6 pm – 7 pm  : session #l2
Thu Aug 20th  6 pm – 7 pm : session #l13
Thu Sep 17th  6 pm – 7 pm : session #l14

I am indebted to Joerg Plechinger who kindly took this picture of me giving a talk at the recent Alzheimer’s Disease International conference in Perth, Western Australia; the conference took as its theme, “Cure, care and lived experience”. 11148818_10206396604176960_7020433520352739075_o

 

Dementia is important.

 

“Dementia” constitutes a large number of conditions. Most people mean dementia to mean an abnormal process affecting the brain, which leads the brain to becoming smaller, affecting any of the brain’s functions, say from planning and working memory to complex visual perception. There are 1000 billion billion nerve cells in the human brain, by and large linked to one another in some direct or indirect way, and that’s why fathoming out dementia, and the effect it has on persons, communities and societies, difficult. Despite decades of trying, and numerous failed attempts, there is currently no cure for the progressive dementias, and resources are allocated in the most part to offering drugs which do not slow down the progression of disease, but have a limited time window in efficacy on symptoms if at all. A much better approach, and this is generally cost effective for us as a society, as well as being a morally valid option, is to encourage and implement a culture of living better with dementia, to benefit people living with dementia and their ‘substantial others’ as other people have called them.   I  myself have written two very influential books on quality of life in dementia, read by a very wide range of people including those who’ve received a diagnosis of a dementia themselves, caregivers, professionals (including doctors, nurses and allied health professionals), and commissioners. The books are: “Living Well with Dementia: The Importance of the Person and the Environment for Wellbeing” (published in February 2014 by Radcliffe Health) and “Living Better with Dementia: Good Practice and Innovation for the Future” (due to be published in July 2015, by JKP Books). Prof John Hodges, one of the world’s most leading authorities on the semantic variant spectrum dementia conditions, described my book at the time thus in his Foreword:

“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.”

This is an important arm of policy, with a huge plurality of evidence, behind the veneer of cheap sloganeering by some others. books

 

BPP Law School is a United Kingdom-based provider of professional and academic legal education and is one of the largest in the country (approximately one third of all entrants to the English legal profession are educated by BPP Law School). I will be hosting these four lectures in the BPP Law School, Holborn. This school is where many students are pursuing the ‘Legal Practice Course’, the bridge between the academic world and professional life in a solicitors law firm, and the ‘Bar Professional Training Course’, the course designed to ensure that students intending to become barristers acquire the skills, knowledge of procedure and evidence, attitudes and competence to prepare them, in particular, for the more specialised training in the twelve months of pupillage. The law school is actually a stone’s throw away from the Royal Courts of Justice, one of the largest and most outstanding buildings in the Strand where you can see the country’s leading lawyers including Silks in action. Tickets for my events will be allocated on a first come first served basis through EventBrite, and will be advertised on Twitter (@legalaware and @dementia_vision). The topics of the lectures are as follows.

Wed June 10th   6 pm – 7 pm : session #l1
Dementia: where are we know? From “friendly communities” to “inclusive communities”.
Thu July 23rd  6 pm – 7 pm  : session #l2
 What’s best for ‘choice’ in dementia services? Budgets or rights?
Thu Aug 20th  6 pm – 7 pm : session #l13
 Dementia: why integrated, joined up, services matter.
Thu Sep 17th  6 pm – 7 pm : session #l14
 Cure, care and research in dementia: do we need to fall out about this?
They will be given in the ethos of the Royal Institution Christmas Lectures, in other words in an easily accessible style, meant for members of the public who are generally well informed about current affairs, willing to learn in an open minded way, but who have no prior knowledge of the dementias.

I also intend, following a smart idea by Prof Carl Lygo, to record podcasts to boost outreach on a number of diverse topics in dementia; this might include, for example, important topics such as culture diversity, case finding and screening, Big Data and pharma, and so on.

Why we need a renovated dementia strategy for England

Leaders establish the vision for the future and set the strategy for getting there.

John P. Kotter

I believe two critical errors were made in the leadership of the current English dementia strategy from the current Government.

Firstly, a culture reigned of wanting to produce high volume low quality dementia diagnoses at any cost, even incentivised in the official NHS England programmes.

Secondly, wilful blindness was paid to the devastating cuts in social care.

I personally will not forgive the current political leaders in dementia for these two massive cock ups.

In my first book ‘Living well with dementia: the importance of the person and the environment’ and for my second book ‘Living better with dementia: good practice and innovation for the future’, I reviewed the contemporaneous evidence for the policy in England of living better with dementia.

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I am now in the process of organising my thoughts on living well with advanced dementia at home and in residential care settings.

Prof Sube Banerjee, Chair of Dementia at the Brighton and Sussex Medical School, will be writing the main Foreword for this book. Indeed, Sube has just published a paper on the shaping of the memory clinic service which signposts future directions helpfully.

Sube remarks, indeed: “We need applied health research designed to fill these important evidence gaps, resolving uncertainty, and allowing the development and delivery of efficient and effective services and policy to enable people to live well with dementia.”

I could not agree more.

The policy leads in the main charities involved with dementia in all parts of the UK I feel have been excellent.

The intentions of ‘dementia friendly communities’ are good. Indeed, many people living with dementia report a significant change in attitudes. To strengthen this concept further, taking full account of rights based approaches, it might be more accurate to frame the argument as ‘dementia inclusive communities’.

We need to ensure that primary and secondary care between themselves have sufficient resources to diagnose dementia accurately.

A lengthy diagnosis can be in effect a diagnosis denied, but it is worth, for many, waiting a bit extra to make sure the diagnosis is as accurate as it could be. An incorrect diagnosis can do considerable harm, and this is simply unacceptable when ‘substantial others’ (as termed by Wendy Hulko) also live with the diagnosis.

There has to be much better recognition of what social care practitioners offer the service for living better with dementia. The ‘year of care’ model, best articulated for diabetes, takes a strongly medical angle.

We also need to think carefully about whose needs we are truly addressing in the post-diagnostic support and for what purpose. Also, for the dementias which present as speech and language difficulties, we need a SALT service with capacity to manage.

The social care profession has been telling us for ages about the tragic consequences in privatisation of social care, and in deal breaking errors in the implementation of personal budgets. But if a future Government is worth anything it will ignore the mandarins of the Department of Health some of whom seem pretty clueless about these issues and correct the problems before the entire health and care ecosystem suffers.

If the aims of a nursing service are to provide support and coping strategies for caregivers, with a view to avoiding admissions to residential home, often unpaid family caregivers, we should be thinking about the training requirements (?is this a community psychiatric service). If the aims of the service is, rather, proactively to manage clinical medical issues, with a view to avoiding admissions to acute medical services, we should be thinking about alternative training requirements (high level of skill in general medicine).

Lessons can be drawn from Winterbourne in this jurisdiction and other jurisdictions notably America about how care in nursing homes can fail. There is no point promoting choice in nursing homes, if people in the general public feel uncomfortable with complicated metrics such as in infection rates or falls, or people are oblivious to inadequate staffing because of the ‘bottom line’.  At the other end, there is evidence for good practice in residential homes, but most of us believe that the debate has substantially come a long way beyond ‘person centred care’.

There is much to be learnt from different care settings, such as hospitals and the hospice movement, about end of life care. End of life is a specialised discipline, and there is much excellent research in this area currently being conducted. I would like knowledge from this area of medicine to be transferred seemlessly into dementia policy, thus improving research and service provision in the English dementia strategy.

We need to be much tighter on ‘dementia awareness’. We need to move the debate on from pretty graphics and presentation packages to meaningful education from people themselves trained in the workforce, or from people with genuine lived experiences. I feel massively people living with dementia have a critical rôle in designing research and services and this should be a top priority. A ‘badge’ to demonstrate dementia awareness is acceptable, but people saying they’ve had ‘training’ when they patently haven’t isn’t.

And I agree with Sube. There has to be parity of esteem. There has to be equal importance for research into living better with dementia and care, as there is for molecules and potential cures.

After the broo-ha-ha of the current election turmoil is over, I am hoping that some people can come together and help to develop a new English dementia strategy.

Maybe we can have this ready for 2016 to run until 2021?

Why it is legal and medical illiteracy to sue your GP over a dementia diagnosis

A recent article in Pulse magazine, entitled “GPs should be sued for ‘late’ dementia diagnoses, says professor”, claimed, “A leading academic has called for patients to sue GPs for failing to diagnose dementia, arguing that ‘the sooner someone sues a GP… the better’. Professor June Andrews, director of the Dementia Services Development Centre at the University of Stirling, made the comments in the Letters section of the London Review of Books, in which she said the ‘sooner someone sues a GP for failure to diagnose as early as possible, the better’.”

The full letter reads as follows:

LETTER STUB

If a doctor behaves in such a way so as to undermine clearly the medical profession, he could be suspended or struck off at worst by the General Medical Council on the grounds of not “working collaboratively with colleagues” under the code of conduct, “Good medical practice” (domain 3).

The particular subsection is rule 35, “You must work collaboratively with colleagues, respecting their skills and contributions.” June Andrews’ suggestion is offensive as it pits people against professionals in primary care, who are doing their best to practise medicine given the resources available to them.

I strongly commend to you the reply by Dr Margaret McCartney. There are about a hundred different types of dementia, not all presenting with memory problems (though Alzheimer’s disease, typified by problems in short-term learning and memory, in the beginning, is the most common type of dementia globally). Therefore, somebody may present with symptoms which are not easily recognised as a dementia. In the younger age group, the behavioural changes in frontotemporal dementia may be misdiagnosed, with no malintent, as depression or anxiety simply.

The issue that McCartney raises is a very important one. And yet it is reported that Andrews has had difficulty in discussing issues with professional colleagues in a sensible manner. Prof Sube Banerjee emphasised in a recent meeting of the King’s Fund, “Leading change in dementia diagnosis and support”, that dementia diagnoses in primary care had to be of correct quality, and professionals in primary care needed support in making these diagnoses. Banerjee further emphasised the considerable damage which might be done in given an incorrect diagnosis of dementia, to someone who did not have dementia. This has always been a risk with incentivising financially making the diagnosis of dementia as others have correctly pointed out, such as Dr Martin Brunet.

It might be that the symptoms do not progress and do not warrant a diagnosis of dementia in severity. The majority of such people with the diagnosis of “minimal cognitive impairment” do not progress to a full blown dementia, and such patients need to be monitored carefully with time.

Recent evidence on this is noteworthy (source above):

“The most compelling papers that concluded most MCI patients will never develop dementia include what are called “meta-analyses”, that is, they combined and reanalyzed the results from a number of different studies that the researchers considered to meet criteria for being well-designed and -executed.

For example, Mitchell and Shiri-Feshki (2009) analyzed 41 high-quality studies, some done on community populations and some in clinical trials.  They concluded that the annual conversion rate from MCI to a dementia is ~5-10%; and that even after 10 years, more than 60% of MCI patients will not progress to Alzheimer’s or any other dementia.  In fact, a substantial percentage actually revert to normal.  Other meta-analyses of long-term (5-10 years) studies reported even lower annual conversion rates, of 3.3 – 4.2%, and cumulative conversion rates of ~31% over 10 years.”

I have previously blogged myself on how the Wilson and Jungner WHO screening criteria may include case-finding, but the National Screening Committee, as McCartney points out, has consistently advised against screening in dementia for a number of years now (and last upheld in January 2015). The actual issues concerning when patients of the NHS decide to seek help over symptoms of dementia are complicated, and have often been investigated methodically. Such issues indicate the national ‘diagnosis gap’ for dementia is not simply due to General Practitioners ‘under-performing’.

All this raises the question of what the legal claim Andrews has in mind. As such, there is no direct contract between patient and doctor in primary care, for which the contractual term is that the doctor must make an accurate diagnosis of dementia immediately; such a claim would therefore be ‘breach of contract’. The claim, in the alternative, could be in the law of tort for breach of duty of care; this is ‘clinical negligence’. Such claims would have to satisfy the “Bolam” and “Bolitho” tests. They mostly would not, one might reasonably anticipate. In an unlikely case that a claim might be upheld, the civil procedure rules for litigation state clearly that the claimant must pursue other dispute resolution means first. This is according to the “pre action protocols” clearly stated under English law.

And how is the patient meant to fund such a claim? It has been widely reported that there has been no legal aid for medical negligence claims since April 2013. This is pursuant to the Government’s legislation the “Legal aid and sentencing and punishment of offenders Act“. In summary, Prof Andrews’ remark is neither held out by the standards of the legal or medical professions, and arguably should not have been made in a position of power.

All political ideologies, ranging from Edmund Burke or E.P. Thompson, do not condone abuse of power. Burke famously said, “The greater the power, the more dangerous the abuse.” It would thus be helpful if Andrews could withdraw her offensive remark, assuming the LRB have printed her letter correctly.

Our #ADI2015 was a triumph of hope in place of fear

The mood music is changing.

We’ve had circular discussions on ‘suffering’ before, to the point we probably agree to disagree, but have learnt to respect other people’s well meant perspectives. But I think it’s fair to say that the happiness and camaraderie which accompanied #ADI2015 is a very real one. I took this photo at a chocolate factory in Adelaide Hills. Nutrition and dementia, as it happens, was a key satellite theme of the #ADI2015.

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Here’s a film by Arc Seven Communications of Beth Britton explaining the need to consider what people with dementia can do.

Living well with dementia from Arc Seven on Vimeo.

As it happened precisely on the day of our return, as I was travelling from Kuala Lumpur to Amsterdam, Australia aired a brilliant programme ‘Insight’ on living with dementia.

It had been a huge pleasure to have returned from spending time with Kate Swaffer, Peter Watt and Colin McDonnell who all featured in this remarkable programme. In place of fear, I felt a substantial integrity was provided by having so many delegates living with dementia attend this year’s Alzheimer’s Disease International (ADI, @AlzDisInt) conference. We met up in Perth, Western Australia, in the middle of April, for three wonderful days.

My talk was on whether dementia care would easily lend itself to private markets. I received a lot of useful feedback from delegates. I basically pointed out the problems of trying to put dementia care under the philosophy of insurance contracts because of the potential asymmetry in information between insurer and person/patient. This information asymmetry, I argued, could come from, say, a complete genetic screen, if NHS England get their way in moving towards personalised medicine/Big Pharma. The problems arise if someone with a high genetic risk for dementia seeks insurance knowing he or she is at high or low risk; or whether a person obtains an insurance policy and then behaves in a high risk behaviour. I argued that it was likely that there would need to be legislation in the English jurisdiction to protect against genetic discrimination, as in the United States.

However, I think I had most fun in the ‘poster session’, for me on Friday afternoon. I had the unexpected pleasure of chatting with Karen Harrison Dening at my session, over the need for a network of national clinical nursing specialists. As it happens, Karen has just published a brilliant book on culture and dementia, which I strongly recommend.

Poster to print for Australia.ppt

Thanks hugely to Chris and Colin McDonnell (@ColinMcDonnell) in helping me enormously during the poster session, which I do find stressful every time (particularly when you have curled up posters so vehemently they have no chance of sticking onto the board!)

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This was for me the most interesting poster of the whole conference – on challenging behaviours, by Kate.

This blogpost explains its rationale in part. Even putting aside the general consensus that the dementias are under diagnosed in many jurisdictions, there’s a feeling that the recent scrutiny in dementia policy has overall helped.

I was particularly impressed by the research presented by Prof Martin Prince on behalf of his group at King’s College London. I think Prof Prince has a clear understanding of the critical assumptions of his work, as you would expect him to have. I had a long chat with him after his lecture. He struck me as a very sincere, thoughtful man, who was open to wider repercussions of his work. In particular, we shared a common interest in seeking accurate estimates for the global prevalence of younger onset dementia.

The beginning of the conference (@ADIConference), I felt, was very surreal but pretty magical. I don’t particularly like the word ‘indigineous’ as I feel Aborigines as it can further division and divide, and I feel that Aborigines have experienced a very bad deal culturally from others exerting racial and cultural imperialism.

Here, I feel some of us must show some solidarity.

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I personally bought a didgeridoo which I gifted to my mother on return (although I am mindful of the physiological limitations of the use of didgeridoo as a musical instrument by females). I was surprised to hear that didgeridoos (sic) are not permitted in hand luggage, however.

The conference itself was incredibly well organised. You can still access the book of abstracts for the conference here and wider information about the programme. I helped to review abstracts for the conference; I was indeed on the international advisory board for the conference, so reviewed abstracts for dementia friendly communities and younger onset dementia.

I am at the end of policy involved with living better with dementia, which includes advocacy across jurisdictions. I found an intense sense of hope and confidence from the conference, as opposed to the shock doctrine of Pharma which can be striking elsewhere in global policy on dementia.

The “vanguards” of dementia advocacy, globally, one may argue, are Kate Swaffer from Australia and Helga Rohra from Germany.

So it came to pass that we were all hugely proud when Kate Swaffer, Co-Chair of the Dementia Alliance International, a group consisting of people living with dementia, came to give her plenary.

I understand that videos of talks given by members of the Dementia Alliance International will be uploaded onto their website in due course.

Here’s for example Helga Rohra, Chair of the European Persons with Dementia, giving her plenary. I was deeply honoured to be name-checked in her talk. Helga is a friend, and someone whom I deeply respect.

(video from the DAI You Tube channel)

One of the plenary speakers was Al Power (@alpower12), Allen Power. Basically, I thought Al is terrific. I have now read his book “Dementia beyond disease”, which I feel is a groundbreaking reframing of the narrative towards treating people living with dementia as individuals with dignity, and how they should not be the target of pejorative language or assault through inappropriate medication.

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I have known of Mick Carmody for ages. Mick has been instrumental in ‘rallying the troops’. I anticipate that his enthusiasm and focus will lead to greater things in global advocacy.

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But I fell in love with Mick and his wife Sue from the moment I met them. They’d come from Brisbane, Queensland, and were hugely thrilled about participating in an international conference on dementia. Mick lives with dementia in Australia, and, it’s fair to say, had not been given sufficient or appropriate encouragement, pursuant to diagnosis. What changed the game for him was finding the Dementia Alliance International.

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I am a card carrying member of the club that individuals who’ve been given a diagnosis of dementia are all unique individuals with a huge amount of experiences, and it’s not what people cannot do, as with us all, but what people can do. Here are Helga Rohra and Chris Roberts, powerful Dementia Friends Champion ambassador for the United Kingdom, as described here in the popular Alzheimer’s Society magazine “Living with dementia”. DSC00226

Helga is simply larger than life, and I found many things Helga shared with me profoundly interesting.  Society has come a long way, but there’s still a long way to go. Helga, I suspect, speaks up for a vast army of people who’ve been given a diagnosis as part of a large social movement, expecting dignity, acknowledgement of human rights, expecting improved employment relations post diagnosis, and calling for holistic care.

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The #ADI2015 was simply triumphant for the Dementia Alliance International. I think part of this confidence has come from the new strategic alliance with the Alzheimer’s Disease International organisation, which has supported DAI, but gone to great lengths to preserve the autonomy of DAI. This brand new arrangement is described in a recent ADI “Global perspective” newsletter. Credit must be given to Kate Swaffer (@KateSwaffer) and Marc Wortmann (@marcwort), CEO of ADI, who, I feel, have been instrumental in making this vaguely possible. Thanks especially to Marc Wortmann for his kind remark about my (minimal) contribution to the #ADI2015.

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It’s dangerous to underestimate how Kate Swaffer has totally altered the terrain of attitudes towards dementia, in a positive way. Kate was diagnosed with the temporal variant of frontotemporal dementia, and the personal story is well described elsewhere.

I travelled around Australia after the conference too with Chris, and I hugely enjoyed meeting John Sandblom (@jball49), Treasurer of DAI. We all basically agree John is a top bloke! DSC00235

Here’s a picture of Chris Roberts, Mick Carmody and Sue Carmody having a look at the posters presenting the latest research into the dementias at #ADI2015. That #ADI2015 was successful in disseminating research to people living with dementia, comprising 10% of the delegates of the conference, I feel is a huge achievement. DSC_0089

I found Daniella Greenwood entirely focused on what the needs of the people with dementia in the care sector are. In the Australian jurisdiction, persons are called “consumers”. Parking this difference in terminology, the plenary given by Daniella emphasised the critical importance of relationships, and I feel this is to be broadly welcomed, in her analysis of ‘consumer directed care‘. DSC00210

Chris was often to be seen manning the DAI stall in between satellites and plenaries at the Conference. But the atmosphere there was “buzzing”. DSC00241

We did enjoy each other’s company. I’ve known @TruthfulKindnes (@truthfulkindnes) for ages, living with a constellation of dementia symptomatology in the United States.

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One of Tru’s list of achievements has been acting like a conduit for the creative expression of many people living with dementia. She specifically mentioned, for example, the experience of visual hallucinations. Visual hallucinations can be a predominant feature, for example, of the diffuse lewy Body type of dementia, an important cause of younger onset dementia, typically with a fluctuating way of symptoms appearing. DSC_0134

Having witnessed Tru’s desire to promote the work of people living with dementia, and her wish to use her gift in public speaking to inspire people, I know how important it was for Tru to make it from California to Australia to promote the experience of people living with dementia.

Tru has a true gift for speaking, with perfectly modulated speech and content.

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Finding this hope to encourage others is deeply meaningful. Here, for example, is Simone Willig’s film (@SWHerborn) of Helga speaking about music therapy.

This year there were some truly outstanding satellite symposia. One that springs to my mind was the one on employment and dementia. I contributed there on the need for a greater understanding of disability law by employers in terms of unfair dismissal and discrimination, consistent with Kate Swaffer’s talk there, and I urged the need for cognitive diversity in the approach from employers, resources permitting.

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Research was a key pervasive theme of the #ADI2015, which took as its title, ‘Cure, care and the lived experience’. There was a keen sense of learning from each other, across jurisdictions. Again, I thank Marc Wortmann for his lead in the workshop I attended where Chris Roberts gave a powerful overview of the lived experience.

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Canada, I felt, offered an useful steer in this workshop on research.

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It is a remarkable testament to the solidarity amongst people living with dementia and people close to them that there’s a huge interest in dementia research; but this is, as many us feel, not just about testing new drugs like guinea pigs but a genuine interest in research in care and living well with dementia. Otherwise, in policy terms, I feel that living better with dementia becomes the ‘squeezed middle’ between prevention and the optimistic search for the cure by 2025. CD7imBGUIAAKAV5

I was struck too by the inclusion of social media in this narrative. DSC_0109

When a diagnosis of dementia is disclosed to someone, quite sadly often in a substandard manner by professionals, there is a clear impact on friends and family. I found the contributions from Jayne Goodrick (@JayneGoodrick) and Kate Roberts, Chris’ daughter, sensational, in telling delegates actually what is happening in real life.

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Tru devoted a substantial part of her talk in outlining the importance of the DAI, as well as her “swiss cheese” model of dementia.

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Completely by accident, I happened to bump into Glenn Rees (@Glenn_Rees), now Chair of the ADI. Everyone who has been following world policy in dementia is aware of Glenn’s remarkable steer of Alzheimer’s Australia, where he has been instrumental in promoting consumer views; and this has had a profound impact internationally on a number of arms of policy, such as campaigning against physical restraint, and campaigning against the inappropriate use of antipsychotic medication.

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Chris, I felt, was a true gentleman, and very engaging as a person. I loved travelling with him in Australia, and with Jayne and Kate. Many happy emotions are brought up in thinking of what we got up to; including Chris’ use of the phrase, “That’s the kind of guy I am!

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And it was incredible to meet for the first time ‘imaginary friends’, quite safe really, such as Jac (@JacintaLynch), here in Adelaide sitting with Chris.

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I don’t drink alcohol. The reasons for this are well rehearsed.

But this did not stop me in any way loving the landscape of the environs of Adelaide Hills. Australia is of course well known for famous brand names in wine, and the Barossa Valley. It, ironically, took me a journey all the way to Australia to appreciate ‘black pudding’.

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The proof of the pudding was indeed in the eating.

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I learnt to trust the restaurant judgments of Kate Swaffer, a pretty mean chef herself (here’s her culinary blog).

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I don’t think Kate has the time to write a cookbook on top of her massive list of other commitments – but.. her work can be felt in remote areas too.

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And – seriously – I have never eaten such a perfect Thai curry ever (the lower dish): cooked by Kate.

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On a completely different matter, I learnt very many things in Australia; not least that kangaroos have big scrotums (sic).

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And that Chris can stand very close to emus, looking as if he’s in fact eyeing them up for dinner. One thing I certainly am thankful to Mick for is explaining how emus are bloody stupid creatures.

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I didn’t know what to expect from Sydney after the conference. But it turned out to be amazing – I spent time with “guess who” (Kate) and new found close friends Lynda Henderson (@yodsupporter) and Veda Meneghetti (@Veda_Meneghetti).

I have many happy memories of my time in Sydney – here are Veda (left) and Lynda (right).

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Veda is fast becoming a leading global ambassador for one of the lesser known of the temporal variants of frontotemporal dementia, the logopenic variant of progressive primary aphasia. She lives with it, and retains remarkable abilities from her life as a professional musician (aside: hence explaining the need for ‘life story’).

It’s yet again a case of what people can do.

Look at this – there’s no way I can sequence rhythms as well as this.

In fact, my supervisor from Cambridge, Prof John Hodges, who also shares a professorial position with Neuroscience Australia (@NeuraAustralia) happens to be one of the leading neurological authorities on this important condition.

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I was really impressed with my visit to see Prof Olivier Piguet, a mutual friend and colleagues of colleagues of mine, Prof John Hodges and Prof Facundo Manes. NeuRA, an innovative research hub in Australia, is something truly advancing the frontiers of cognitive neurology.

Whilst I did not have time to go to the Sydney Opera House (I think Kate has seen the iconic ‘Carmen’ there).. IMG_0316

I did have a very long chat with Prof Olivier Piguet. Olivier and I have the same strong interests in social cognition, the somatic marker hypothesis and the functions of the ventromedial prefrontal cortex, anticipation of future events, episodic memory and eating behaviours; the common link being the behavioural variant of frontotemporal dementia. This is of course what I specialised in for my PhD at Cambridge.

It is nice to be involved with promoting research in dementia, if only at a global level and not in this jurisdiction (England).

I am not, however, convinced that a US baseball cap is the best way to do this for me?

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I also discovered Olivier is much taller (and wittier!) than me! IMG_0342

Places like NeuRA do inspire me. They should inspire the rest of the global research community in cognitive neurology too. IMG_0360

And Veda, it turns out, was buzzing about the work of NeuRA. IMG_0366

Chris, it turned out, was amazing at throwing a spear as in Aboriginal culture. He did far better than the other visitors at Uluru, but of course it wasn’t a competition. When I delicately asked Chris how he came to be so proficient at throwing spears, he explained that he used to enjoy throwing javelin in school sports. So again it’s about what you can do – and I can’t throw a spear with my chronic double vision!

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Chris, a leading advocate for living with mixed vascular and Alzheimer’s disease, was pretty good at boomerangs too.

The landscape around Yulara Drive (and Uluru) was simply gorgeous. This per se of course is nothing to do with #ADI2015, but conveyed the flavour of hope and happiness that was present at #ADI2015.

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Chris, Jayne, Kate and I watched Ayers Rock change colour. Jayne in fact recorded a remarkable time lapse video of this. IMG_0420

Chris taught me how to take photos of people; consisting of 2 eyes and 1 ear. IMG_0427

Ayers Rock gave us plenty of time to think about the beauty of Australia. IMG_0447

But we had to ease our way back to the real world in a thud, albeit via a 4.5* hotel in Sydney near the international airport. IMG_0465

Currently, there is quite a lot of convergence in mutual research interests. Here for example is output from Alzheimer’s Australia taking as a spotlight prevention and social determinants of health (discussed in my new book).

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This was my old book ‘Living well with dementia‘ (from 2014), which I didn’t “flog” at #ADI2015 (though many were well aware of it, which humbled me.) The large poppy on the front is courtesy of, and photographed by, Charmaine Hardy (@charbhardy).

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I got Kate, Helga and Al to sign a copy of my book published last year – in a completely narcissistic way (I do apologise.)

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I myself met ‘virtual friends’, such as @JoanneAgnelli whose work on language and dementia is widely respected.

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My new book (“Living better with dementia”) is significantly more discursive than the last one, and should be published around 21 July 2015. Thanks very much to Jessica Kingsley for publishing it. It contains a chapter on whole person (integrated) care, which is due to reach a prominence, hopefully, after the UK’s general election on May 7th 2015.

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The ‘stub’ will give you a flavour of the topics I will cover.

“What do national dementia strategies, constantly evolving policy and ongoing funding difficulties mean for people living well with dementia? Adopting a broad and inclusive approach, Shibley Rahman presents a thorough critical analysis of existing dementia policy, and tackles head-on current and controversial topics at the forefront of public and political debate, such as diagnosis in primary care, access to services for marginalised groups, stigma and discrimination, integrated care, personal health budgets, personalised medicine and the use of GPS tracking. Drawing on a wealth of diverse research, and including voices from all reaches of the globe, he identifies current policy challenges for living well with dementia, and highlights pockets of innovation and good practice to inform practical solutions for living better with dementia in the future. A unique and cohesive account of where dementia care practice and policy needs to head, and why, and how this can be achieved, this is crucial reading for dementia care professionals, service commissioners, public health officials and policy makers, as well as academics and students in these fields”

And I think #ADI2015 has paved the way for this book (and my final one which will be on living at home and residential care settings in more progressed living with dementias.)