Vlog on @KateSwaffer’s “What the hell happened to my brain?” (pub Jan 21, 2016)

I received this morning my copy of “What the hell happened to my brain?” written by leading international advocate in dementia, Kate Swaffer. This book is due to be released by Jessica Kingsley Publishers on January 21st 2016. I received an advance copy as I wrote one of the Forewords. The other Forewords have been written by Dr Richard Taylor Ph.D. and Glenn Rees AM Chair of Alzheimer’s Disease International.

Kate is Chair of Dementia Alliance International, the international stakeholder group run by people living with dementia. I feel this book will be incredibly useful for a diverse audience, including doctors – especially those completing specialist training in medicine (general medicine, neurology, psychiatry, surgery especially) – as well as members of the public newly diagnosed with dementia.

I know Kate Swaffer held Dr Richard Taylor Ph.D. in very high esteem. I found the chapter dedicated to him, and his Foreword, very moving.

This book is all about living ‘beyond a diagnosis of dementia” – Kate’s phraseology TM. Kate was the first to articulate and explain the phenomenon of ‘prescribed disengagement’ how people at the point of diagnosis are often put into a process of managed decline when they could be given opportunities for an enriched life. This of course goes together with essential practical help, such as things you can do such as driving. It also explodes myths out of the water – and ignites a provocative debate on the ‘big money’ in dementia, disability discrimination, an urgent need to rework the medical label of ‘challenging behaviours’, early vs late diagnosis, stigma, loneliness, inclusion, and guilt.

It’s not hyperbolic, nor puffery, to claim that you won’t be able to put this book down. It’s an outstanding book, and I strongly commend it to you.

 

Dr Shibley Rahman  London : 15 January 2016

 

 

Book review: “People with dementia speak out” by Lucy Whitman

Published by Jessica Kingsley publishers, 2015.

ISBN-10: 1849052700
ISBN-13: 978-1849052702

 

It’s a necessity of civilised citizenship that voices are listened to. A particular issue with the narrative on dementia is that it has sometimes been unclear whose story we are listening to. It’s easy to ignore some stories if they don’t fit a big picture. It’s particularly easy to ignore those stories if you don’t actively seek them out.

Somewhat paradoxically I am also reading Koch on consciousness. This thesis is somewhat a reaction against the simply reductionist approach. It is inevitable that, in seeking out disease modifying drugs for dementia or possibly cures, the approach is somewhat blunt – but who’s to say it will not be effective?

I had to read Lucy Whitman’s book several times to understand it properly. Like a psychological thriller, somewhat, most of the power in the message is left entirely up to the reader to work out for himself. It’s a relic of Tom Kitwood’s work that no two people with dementia are the same – and this is abundantly clear from reading the diverse accounts of people living with dementia in this book. And yet important themes emerge – about how the diagnosis is unnecessarily bungled, often, by the medical profession, and how individuals come to terms with the diagnosis.

What is also revealing is the extent to which people have friends and family to rely on at this demanding time. But what is especially exciting, often, is that how people beyond the diagnosis of dementia (to use Kate Swaffer’s phrase) find a meaning in their lives. If you believe it’s not how you fall, it’s how you get up, it’s particularly educational to see how people have got on with their lives in the face of relatively little in an offering from the medical profession.

The book is very effective. The accounts sound authentic, and in no way homogenised by Whitman. The accounts are diverse, candid and sobering. It is a very well written book, which is a pleasure to read. I think the windows on various people’s lives would be wonderful background reading too for any professional in training.

No one account of dementia is any more relevant than the other, but this is not to say that all should have prizes. Every single person in this book has faced unique challenges and concerns. Lucy Whitman herself in the introduction confronts whether how representative the ‘sample’ is. Quite correctly, no one person is particularly representative, but I think it would be completely unfair, say, to say that there is no account from a particular diversity perspective.

But is this book entirely self-selecting? My issue with this criticism is that everything can be viewed through the self-selecting prism. What is it that makes someone write a book in the first place? Producing this book must have been a real ‘labour of love’ for Lucy Whitman, and her passion and enthusiasm seep through every pore of this book. One may in passing wonder the people with dementia are on the young side, some perhaps ‘professional activists’. But this would be entirely to miss the point – for example, as said before, is a vicar a ‘religious activist’ or an author ‘a literary activist’? One can certainly not ‘blame’ a person with dementia having a clear articulation of where he or she stands with the diagnosis. Whilst a person is not defined by any disease, its significance for the person, friends and family can never be underestimated.

There is currently no book like this. I suspect it will be incredibly hard to match it – and I feel somewhat this book taking the lived experience seriously is desperately needed given the relative abundance of books looking at dementia through other prisms, including strongly theoretical approaches, or books which are only accessible to a neuroscientific audience. Living realistically, and in a content way, with dementia is the big issue. What is particularly useful from this book is an overview of the sorts of services which are in existence following diagnosis (and which aren’t). I think this book fills that void after diagnosis where people often don’t know to whom to turn with the new news.

But the book, whilst fascinating and optimistic, also does depict a realistic view of the dire way in which ‘post diagnostic’ life is all too often organised from care and support services. But from this commissioners and other professionals can think constructively about what we’re missing, contemplate how we wouldn’t necessarily wish to start from here, and feel more than a morsel of regret about not looking towards people living with dementia in the first place.

So many congratulations to Lucy Whitman. This is a seminal and unique contribution, which deserves wide praise. It must be widely read, and I am certain it will be.

 

‘Dementia friendly’ checkouts: more than a fad?

Tesco and Asda are two of the stores which have introduced ‘dementia friendly checkouts’ in supermarkets according to two reports.

Both reports refer to ‘training’ even though the Alzheimer’s Society state clearly ‘Dementia Friends’ is about information sessions, not training Both reports refer to the ‘Dementia Friends’ programme and the Alzheimer’s Society. I myself am a ‘Dementia Friends Champion’, and indeed I am due to give an information session at BPP Law School next thursday (details here).

Dementia Awareness Week was about sharing wider knowledge about dementia, rather than promoting the Alzheimer’s Society solely though the Alzheimer’s Society should be congratulated for giving the week momentum; and the the success of this, arguably, is reflected in the diversity and quality of tweets using the hashtag.

Alzheimer’s Research UK came up with an intriguing idea – the auction of hats to raise money for research into dementias. I myself know recipients of these grants, and the work invariably is outstanding. We must be keen to promote research into care as well as cure, however, and this needs the correct political lead.

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Of course, by doing ‘Dementia Friends’ you’re not supposed to be “locked in” to working only as a volunteer for the Alzheimer’s Society. There is no such exclusivity requirement. And there’s no better time than now to campaign for dementia, such as the petition here against Hull Clinical Commissioning Group in their short-sighted decision not to commission Admiral nurses (a type of clinical nurse specialist for dementia).

The ‘dementia friendly communities’ policy tranche is indeed global, and spearheaded by a number of protagonists, including Innovations in dementia and the Joseph Rowntree Foundation. At a time when there is still much stigma and prejudice against dementia in society, the aim was to provide an environment which was conducive for people living with dementia, friends or families to lead fuller lives. This is, of course, a very laudable policy aim, and involves not just the health and care systems, but the wider ‘social determinants of health’ such as retail and banking, housing and transport.

It is worth at this point considering the irony of the approach of ‘dementia friendly checkouts’ in the context of the ‘Dementia Friends’ programme. One of the five key messages of this information session programme is that ‘There is more to the person than the dementia’. This was explained to me last year in Glasgow by Joy Watson as “putting the ME in deMEntia”.

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The issue is that in person-centred approaches in dementia post-diagnostic care and support people aren’t defined by a label. For example, you should be very careful about the use of the word ‘elderly’. There are some NHS Trusts that define ‘elderly’ for the purposes of their acute medical take as patients above the age of 65; others above 85. And, as Chris Roberts said to me once, the differences between people aged 55 and 65, 65 and 75, 75 and 85, can be big or small. We all know 68 year olds who appear quite ‘frail’ but 85 year olds who appear quite ‘spritely’. But the issue is that, as far as commissioning is concerned in the NHS and the voluntary sector, things tend to get defined by their labels, such as new ‘million pound frailty units’. I’ve seen it before – that policy based on fashion or trends invariably ends in tears.

I think if you chat with people what they think about supermarket checkouts you will get a proportion of people who report that they’re chaotic stressful places. Many people without dementia dislike them. I in fact dislike them, not living with dementia; which is why I buy my shopping online. I also don’t know many people who meticulously count their coins in paying for their weekly shopping, so huge banners with coins may not help.

People living with dementia often describe members of the public raising the volume of their voice at them as if they’re ‘stupid’. It could be that you have problems in recognising the shapes of coins. This is called a ‘visual agnosia’. I know the late Sir Terry Pratchett described not being able to recognise a 50p coin from its shape, which is a touch form of the same cognitive condition, called ‘tactile agnosia’, which can signpost a diagnosis of ‘posterior cortical atrophy’ type of dementia.

As Pratchett was reported to have said,

“For some, they might struggle in a supermarket with finding the right change. That nagging voice in their head willing them to understand the difference between a 5p piece and £1 and yet their brain refusing to help them. Or they might lose patience with friends or family, struggling to follow conversations.”

Again a big banner won’t help. And for people with classical Alzheimer’s disease their long term memories will be very good as opposed to their short term memories.

A more appropriate term for examples such as the ‘dementia friendly checkouts’ might be ‘dementia inclusive communities’ – and this is indeed keeping with rights-based advocacy, where stakeholders uphold their equality (and for the time being human rights) rights under the law. But there maintains for me, and many others, this stubborn strand in policy in whether it is in fact creating inclusivity or ‘otherness’ for “people with dementia”?

“People with dementia” is a homogenous term which is not only an injustice to the hundred or so different types of dementia but also an injustice to the 47 or so million people living with dementia all with different abilities in cognition. ‘People with dementia’ are most likely to have cognitive disabilities more than ‘people with bowel cancer’, but one must be mindful of the fact one would think twice about having a special shopping aisle for people with operated bowel cancer (for people with colostomy bags).

Of course, the argument is at risk of getting utterly ridiculous. But this issue became very vibrant indeed as one of the producers of the film “Still Alice” asked the people living with dementia in a crowded lecture theatre in Perth, Western Australia, to stand up to identify themselves. The general ‘feedback’ is that this stunt was generally felt to be rather humiliating, and Kate Swaffer, Co-Chair of the Dementia Alliance International (DAI), received a number of complaints about it. The DAI is the leading international group consisting only of people living with dementia.

We are in a different place with stigma and dementia to where we were with physical disability, possibly. I am physically disabled, so I feel “within my rights” to discuss this. Many people find the word ‘disabled’ and being in a wheelchair “empowering” – many disempowering. You can take your pick as to whether people with dementia want to be identified in a separate shopping aisle in a public supermarket. But this criticism is not one which I have intended to level at proponents of ‘dementia friendly supermarkets’ – it’s simply a wider policy observation as to whether, yet again, the policy promotes inclusivity or otherness. There will be people who believe that ‘all publicity is good publicity’, but you can unfortunately have the wrong type of publicity (like the wrong type of snow).

And all this does matter if we are to bridge the lived experience of all people who’ve received a diagnosis of a dementia and what the crude policy levers are trying to achieve. I do, however, wish to thank the people behind ‘dementia friendly checkouts’ for their excellent work.

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.)