Tag Archives: conference

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#ADI2016 The force awakens

I enjoyed the opening ceremony – though some delegates remarked to me how ‘fit’ the dancers were, maybe indicative of long plane flights to get to the conference venue.

Yesterday, I remarked to the CEO of Alzheimer’s Disease International (ADI), Marc Wortman, as Marc was leaving the hotel, that the Alzheimer’s Disease International conference had ‘interesting dynamics’.

What I actually mean is this.

Speakers from Dementia Alliance International were outstanding. I think Prof Peter Mittler’s talk on how people with dementia must demand access to their rights under the UN Convention for People with Disabilities was a game changer for many. For me, it was the best lecture I’ve ever attended in my lifetime.

I mentioned to some separately that for me Prof Peter Mittler was the equivalent of a premiership footballer, in terms of lecturing ability, when many lesser mortals in comparison look in lower divisions.

I reckon I would’ve actually made it to Dennis Frost’s talk on time especially, not wandered through accidentally half-way through by accident, had Dennis not been advertised as ‘A person with dementia’. This billing on the programme was complete nonsense – as ridiculous as having ‘A person without dementia’ to describe the billing of someone like a policy wonk from WHO.

This was a worthy project which caught my eye.

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It was lovely to be recognised by so many at the conference – people whom I had never met before, as well as longstanding close friends of mine. The conference expectedly did have the atmosphere of a family wedding – with people I like and respect there.

I think Jeremy Hughes and George McNamara, senior people at the Alzheimer’s Society, gave excellent presentations. George’s one is particularly relevant to my next book, and contained many many useful avenues for future directions. I think Dementia Friends on principle has good aims, but a real concerted effort must be put now into making meaningful sense of this high cost campaign.

Dementia Alliance International (DAI) is a group essentially run by people with dementia to advocate for people with dementia. But the sheer individual brilliance of the presenters shone through – including Prof Peter Mittler and Prof Mary Radofsky whose contributions were incredibly interesting. There’s no doubt ADI hugely benefited from their presence in the conference, including in the programme list. But I do also feel this is a beginning.

The mood music has changed. DAI has a scarce resource other people want – individual expertise by people with dementia – which many people do not have. It’s clear that the future direction of dementia policy now can be ‘no decision about us without all of us’, and can move from dinosaur lobbying techniques and hospital-dominance to representing the sincere views of people living with dementia.

A day before the first full day, Glenn Rees AM, Chair of ADI, let us know that his Board had approved DAI’s proposal to promote Convention rights, and this would now become their official policy, such that it would be left up to individual national organisations as to how best implement rights-based advocacy. Rights-based approaches, including rights to independent living and right to health, have huge implications for dementia care and support worldwide.

Helga bust a gut to help me with my book signing session.

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Thanks very much to Peter Macfarlane from Wisepress for his help for this. Dale Goldhawk, Vice Chair of ADI, even bought a copy!

I had great feedback from my presentation on the awareness of international human rights. Thanks very much to John O’Keefe for chairing this.

Some photos I took are here.

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I suppose my favourite ‘times’ of conference was when Agnes Houston made a ‘selfie’ photo of herself for the first time.

And also I think Agnes and Nancy McAdam talking about how they felt really included in Scottish dementia research (#whywedoresearch) on a boat on the Danube was much fun too. A sort of “Alas Houston and McAdam” moment.

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Jeremy Hunt MP addresses the Conservative Party conference 2015

Good afternoon.

I’m sorry I’m not the most interesting Jeremy in British politics right now – but I do have the most interesting job, and there is no greater privilege in government than being responsible for our NHS.

To do that I’m supported by a fantastic ministerial team.

So let me start by thanking Alistair Burt for his avuncular kindness, Ben Gummer for his youthful energy, Jane Ellison for her good-natured calmness, George Freeman for his great passion, and David Prior for his worldly wisdom – what a team and I am lucky to have them.

My day as Health Secretary usually starts the same way.

When I arrive in the office there’s a pink folder waiting for me on my desk.

It contains a letter from a member of the public about something that’s gone wrong in the NHS.

Of course these letters are not typical of much brilliant care that happens every day in our hospitals and surgeries.

But I know that if I ignore the things that go wrong, others will too.

I’ll never forget one letter.

A lady wrote to me about her brother who worked as a call centre manager.

He went to hospital for an operation because his back was in agony from a pinched nerve.

Things didn’t go well, including a feeding tube inserted incorrectly, a catheter left blocked for 2 days and cries for help left unanswered in what ended up being a horrible last two weeks of his life.

As Health Secretary you have a very simple choice.

Do you ignore these problems and try to sweep them under the carpet or do we confront them head on and sort them out?

It’s a political choice, too.

Because it’s never comfortable for any government to admit when things go wrong.

But if you care for something – as David Cameron always has for our NHS – you want it to be the best.

I’ll tell you someone else who wanted it to be the best. Nye Bevan, the Labour Welsh firebrand who set up the NHS in 1948 – four years after a Conservative Health Minister suggested it.

Now Bevan would probably turn in his grave if he knew he was being quoted at a Conservative Conference.

But he used a good phrase to explain what he was trying to do.

He said he wanted to ‘universalise the best.’

If the NHS is about equity, it has to be about excellence.

If someone wealthy lives near a hospital with problems, they have alternatives.

But everyone else depends on that hospital.

And if we don’t do everything in our power to improve the quality of that hospital we betray them – and we betray the founding vision of the NHS which says that however fraught your life, however frail your voice our society has not forgotten you because we have an NHS.

The vision of Nye Bevan before.

The vision of a one-nation Conservative Party today.

But a vision that, in office, the modern Labour party forgot.

Their pride in having set up the NHS blinded them to the dangers of ignoring poor care.

Targets mattered more than people.

Good news mattered more than good care.

So when we faced up to the problems of Mid Staffs – which happened on Labour’s watch – they said we were ‘running down the NHS.’

They even tried to vote down the law that set up an independent Chief Inspector of Hospitals.

The true party of the NHS insists on high standards for patients in every corner of the NHS, however tough and challenging that might be.

And although there is much still to do, the results so far speak for themselves.

24 major hospitals have been put into special measures in the two years since the Francis Report into Mid Staffs.

People said no one would want to work at those hospitals.

That they would sink in a spiral of decline. That things would go from bad to worse.

Instead those Trusts changed their boards, recruited hundreds of doctors and nurses, and transformed the care they give. 9 have already come out of special measures and according to one study up to 450 lives are being saved every year as a result.

So let’s recognise the brilliant work of the doctors and nurses  at Basildon, Tameside, King’s Lynn, East Lancashire, George Eliott, Bucks, Goole, Lincoln and Heatherwood and Wexham Park who have worked so hard to turn their Trusts round.

Across the NHS the effort to learn those lessons and improve care has never been higher. And I want to pay tribute to some of the achievements in the last 5 years.

Record numbers of doctors and nurses.

MRSA and CDiff rates halved.

Mixed sex wards eliminated.

Cancer survival rates at a record high.

Maximum waiting times introduced for mental health.

A million more operations every year.

And public satisfaction going up, now at near record levels.

Last year the independent Commonwealth Fund said that under the Coalition our NHS had become the best healthcare system in the world – better than France, better than Germany, better than the US – and here’s something for rugby fans – better than Australia! – so let’s hear it for all 1.3 million NHS staff working so hard in such challenging circumstances – the nurses, cooks, surgeons, cleaners, clinicians, physiotherapists, mental health professionals, porters and volunteers.

We are proud of every single one of you.

And not just the NHS – let’s recognise those working for local authorities to support our vital social care sector and public health programmes.

As you struggle with the pressures of a rapidly ageing population, you too have had many successes.

Integrated care finally becoming a reality thanks to the Better Care Fund.

Smoking rates at an all-time low.

Teenage drinking down and drug use halved in decade.

Teenage pregnancies at a 40 year low.

Yes the gaps between richer and poorer areas are still too high but we are making progress – and Conservative governments and Conservative Councils will never allow young people to have their future taken away by accidents of birth, or debt, or dependency, or addictions which destroy their dreams and take years off their lives.

I have a simple plan.

I want our party, the Conservative Party, to be the party of the NHS.

Some people listen to our opponents and think differently.

So we have to prove it.

And we are.

For two elections in a row, David Cameron and George Osborne promised more money for the NHS than any other party.

The extra £10 billion we have committed to the NHS this parliament is a massive commitment in the face of the worst deficit in our peacetime history.

But what Conservatives know is that a strong NHS needs a strong economy.

We also know high quality public services are not just about what taxpayers put in – they are about what the public gets out.

That whether it’s schools, or police, or hospitals the truly progressive party is the one that fights for higher standards and tackles problems head on.

Like the issue of people who die when they shouldn’t because they are admitted to hospital over a weekend.

When we said in our manifesto, we were committed to 7 day services, it wasn’t just about the convenience of evening and weekend GP appointments, important though that is.

It was to end the scandal of 11,000 excess deaths each year because of what is known as the ‘weekend effect’ in hospitals.

We are not asking junior doctors to work longer hours – that wouldn’t be safe.

Nor is it our intention to cut doctors’ pay – and it is utterly irresponsible to try and scare people into believing we are.

But we do want to support the many doctors who do work weekends with properly staffed shifts, safe working hours and 7 day diagnostic services so that patients are not put at risk.

So I say to those people working very hard right now on the frontline, stand beside us as we address this.

What’s good for patients is good for doctors, so be our partners in building the safest, highest quality healthcare system in the world.

Now safe care is not just about weekend services.

How many of you know that there are around 200 deaths in our hospitals that could have been avoided every week?

We’re no better or worse than other countries – but that’s like a plane crash a week because of mistakes we shouldn’t be making.

Part of the reason is that across the world, often the culture in hospitals is wrong.

Put simply we make it too difficult for doctors and nurses to speak out about poor care.

Too many worry that if they own up to making a mistake or blow the whistle on poor care they will be fired – as they sometimes are.

As a result not only do we cause patients and families untold anguish as they search for the truth, we lose the chance to learn from those mistakes.

In our hospitals we need an honesty culture not a blame culture – which is why I asked Sir Robert Francis to do the first ever independent review into whistleblowing.

Some people say we don’t have enough money in the NHS to deliver the high standards of care we all want.

But it isn’t a choice between standards or money.

If someone catches MRSA in hospital, they stay in hospital for longer costing the NHS more money.

Safer care costs less, not more.

So let’s eliminate the waste from unsafe care and like the rest of the public sector make efficiencies and raise standards at the same time.

Our best hospitals like the Salford Royal down the road, Frimley in Surrey and Northumbria show us it can be done, so let’s learn from them and never waver in our commitment to high quality care in every corner of the NHS.

Now I want to talk about GPs.

Let me tell you about a wonderful GP in Essex.

Every week he asks his practice nurses to write the names of any patients they are worried about on post-it notes.

He then personally calls them to check up how they are.

We have many GPs like him.

But many more who want to be like him, but find they simply can’t deliver that kind of personal care because of targets and tick-boxes and rising appointment lists.

That kind of personal, proactive care should not be a relic of a bygone age.

It’s how we’ll make the NHS sustainable by keeping people healthy and happy at home without needing expensive hospital treatment.

So on Sunday we set out plans for a new contract that will support GPs to deliver evening and weekend care by working with other local surgeries and clinical staff.

We also announced a £750m scheme to improve primary care premises and technology to allow surgeries to expand and modernise their services.

And it’s why we are backing the NHS England Five Year Forward View which will connect the services offered by GPs, local hospitals and social care system to offer integrated care closer to home.

Right for GPs, right for the NHS and the social care system – and most importantly right for the patients.

Let me finish with a point about the culture in the NHS, perhaps the most important point of all.

If we’re going to change the culture to make it more focused on patients, governments too are going to have to change the way they run it.

The NHS is the fifth largest organisation in the world – only beaten in size by McDonalds (now you weren’t expecting the Health Secretary to mention McDonalds were you?), and also Walmart, the Red Army and the US Department of Defense.

Faced with such a large bureaucracy, health secretaries of all parties – quite understandably – have tried to make changes by introducing targets.

Individually those targets have worked – bringing down waiting times, speeding up A & Es, improving cancer care and so on – but collectively they have undermined the professionalism and sense of vocation that should be at the heart of medicine.

Now I’m not going to scrap every target because patients should never have to wait too long for treatment.

But we do believe peer-review, transparency and openness about performance is a better way to drive up standards than endless new targets.

So last year I launched a new website, MyNHS, where we publish more information about NHS performance than any other healthcare system in the world.

You can see how safe your local hospital is;

how good the food is;

how good your local GP surgery or care home is;

the mortality rate for your surgeon

and over 693,000 other pieces of data.

From next May we will go further with assessments on MyNHS about the overall quality of mental health and cancer care, area by area,

and because we still have too many avoidable deaths we’ll also publish avoidable death rates hospital by hospital.

Some people have criticised this as ‘naming and shaming’ – but there are no sanctions or punishments for those with low scores, just the opportunity to improve.

Transparency for patients, not targets for politicians.

A new culture where patients always come first.

Conference, our healthcare system has always faced challenges.

And our strongest weapon in the face of those challenges has always been our willingness to innovate.

We discovered penicillin, we pioneered anaesthetics, we made the first hip replacements possible and we unravelled DNA.

We gave Britain the NHS – and the world its first universal healthcare system.

And we’re not stopping.

We will soon be a world leader in curing rare diseases with our genomics programme;

a world leader in using transparency to drive up clinical standards;

a world leader in improving hospital safety.

All backed with the resources of a strong economy only a Conservative government can deliver.

Some say with pressures mounting and money so tight, we need to rein back our ambitions.

But I say the only way to meet the challenges we face is to raise our ambitions, face the storms and draw strength from the wonderful commitment of NHS staff and the British people who stand foursquare behind them.

Because with a one nation Conservative government, for our NHS the best is yet to come.

Thank you.

 

And here was the reaction of Richard Humphries, Director at the King’s Fund:

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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.

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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.)

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The 24th Annual Conference for Alzheimer Europe put people with dementia in the driving seat. Deservedly so.

The biggest dementia conference to be taken place in Scotland (“Conference”, attended by 800 professionals, people with dementia and carers) was held in Glasgow last week (20-23 October 2014).

The focus of the conference was Dignity and autonomy in Dementia and the four day event explored in quite some detail how recognising the human rights of people with dementia, their carers, partners and families is key to ensuring dignity and respect, as well as overcoming stigma.

It was the 24th Annual Conference of Alzheimer Europe (@AlzheimerEurope, an umbrella organisation of 36 Alzheimer associations from 31 countries across Europe), supported this year by Alzheimer Scotland, .

The timetable was exacting.

The people there were very special; for example Tommy Whitelaw (@TommyNTour) mentioned in Alex Neil MSP’s speech at the conference. Tommy and Irene Oldfather (@IreneOldfather) happened to be passing through during one of my poster sessions.

2 Tommy N Tour

And Beth Britton (@BethyB1886).

Beth-AlzEurope

Well done to the conference organisers for putting it together, especially Gladwys Guillory.

timetable

The main conference hall of the venue, the Crowne Plaza in Glasgow, the Argyll Suite, was majestic.

I particularly liked the ‘live Twitter feed’ at the front of the hall, where curiously Kate Swaffer (@KateSwaffer) appeared many times all the way from Australia. Here I am appearing with my ‘selfie’, with somebody well known in the foreground of the photograph.

Selfie

The relative failure of the medical model in addressing the needs of people with dementia and caregivers was a pervasive theme throughout the whole conference.

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I had a nice chat with Marc Wortmann (@marcwort) over one of the lunches. Marc is in charge of all aspects of ADI’s work (ADI = Alzheimer Disease (and associated conditions) International; @AlzDisInt). Collaborating with the Board, Marc implements finance and campaign strategies.

Marc represents ADI at international conferences and in the NCD Alliance and takes part in WHO and UN meetings. I was also able to bump into Jean Georges (@JeanGeorgesAE), the Executive Director of Alzheimer Europe.

Marc Wortmann

Cabinet Secretary for Health, Alex Neil, delivered a clear keynote speech to the conference at the Tuesday morning plenary session, in which he paid tribute to the immense contribution of Tommy Whitelaw.

Key to the event was the signing of the Glasgow Declaration: a commitment to promoting the rights, dignity and autonomy of people living with dementia across Europe, as guaranteed in the European Convention of Human Rights and the Universal Declaration of Human Rights.

Glasgow Declaration

Here’s a great slide of ‘s “PANEL” (pic taken by ).

PANEL

The satellite symposium sessions were well put together, and attracted substantial audiences.

There was an amazing moment when Agnes Houston (@Agnes_Houston), Chair Scottish Dementia Working Group, said to Helga Rohra (@ContactHelga), the Chair of the satellite session and Chair of European Persons With Dementia, “All we people with dementia need is a bit of help — AND A BIT OF TIME!

A quotation from Agnes – from a previous conference – says it all for me.

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Agnes and Helga

The audience burst out laughing.

The reason for this is that Agnes had been originally timetabled to have more time for her slot, apparently.

As the conference was themed around the law, including human rights, invariably discrimination against people with dementia came up in various forms.

human rights

I asked about the topic several times.

One talk of the entire programme which I thought was truly outstanding was PL1.3. Gráinne McGettrick (Alzheimer’s Society of Ireland): The UN Disability Convention as an instrument for people with dementia and their carers.

2 Grainne

In the English jurisdiction, dementia can count as a disability; therefore there are statutory requirements for ensuring dementia-friendly communities from employers. Also, unfair dismissal of a person on account of being newly diagnosed with dementia will clearly be unlawful.

A member of the audience politely pointed out to me afterwards that a person normally gets sacked first, and then gets his or her diagnosis of dementia confirmed much later, so at the point of dismissal the dismissal does not obviously appear unfair legally.

I found this observation incredibly insightful, as there have been thus far no ‘test cases’ of unfair dismissal on grounds of a diagnosis of dementia in the English jurisdiction.

disabilities

I had brought along my book ‘Living well with dementia’, but I rarely got a chance to read (or refer) to it during the course of the whole week!

Living well with dementia

I asked several times why there is no representative of persons living with dementia or caregivers on the World Dementia Council (@WorldDementia). The background to this fiasco is explained here.

I had designed that I would be staying in the same competitively-priced hôtel as Jayne Goodrick (@JayneGoodrick) and Chris Roberts in Glasgow for the 24th Alzheimer Europe conference held in Glasgow, the city where I was born.

It was by chance we gave a lift to Dr Ruth Bartlett (@RuthLBartlett) to the conference venue. Ruth was staying, as it turns out, in the same competitively-priced hôtel.

Ruth is of course well known for her well respected contributions about the citizenship of of people living with dementia, and how this has influenced the ‘involvement’ of people with dementia in policy.

This was us just before the opening ceremony – when we were full of energy.

I really enjoyed speaking with Geoff Huggins (@GeoffHuggins), who gave an excellent speech in the opening ceremony.

Geoff Huggins

I presented my talk on how dementia healthcare would not be best served by a private insurance system, because of the potential problems of ‘moral hazard’ and genetic discrimination.

This talk was, overall, well received.

1 Shibley and talk

I was particularly pleased with the wide-ranging, excellent discussion we had after my talk. Thanks especially to Amy Dalyrymple (@Amy_Dalyrymple), Head of Policy for Alzheimer Scotland, whose contributions in all areas of policy were particularly interesting. The work currently being implemented in Scotland represents a culmination of very high quality inclusive work through a number of different stakeholders.

I was also honoured to present two further research posters, which I had co-authored on the perception and identity of the G8 conference.

1 Shibley and poster

 

Chris Roberts (@mason4233) helped me with the poster session. It was in fact Chris who identified that the phrase “living well with dementia” was not used even once in the top 75 web articles on #G8dementia on Google, in about 44000 words odd.

1 Chris and poster

All around the conference were people whose work is directly relevant to my book: for example Silke Kammer – on the arts and music – and Emma Killick (@RealEmmaKillick) who at the excellent MacIntyre leads on children and adults with learning disabilities and/or autism, but is clearly passionate about people with learning disabilities who later have further unaddressed needs on receiving a diagnosis of dementia.

It was terrific to bump into followers everywhere I went. It was great to meet Julie Christie (@juliechristie1) for the first time, whose work on resilience I am much interested in. It was also lovely to see Anna Tatton (@annatatton1) doing so well.

I am well aware of why the Scottish dementia nursing strategy, some say, has become the ‘envy of the world’. It was a huge privilege to meet in person Janice McAlister (@JaniceMcAlister), who was BJN Nurse of the Year Elderly Care 2013. In addition, I found the presentation by Hugh Masters (@HughCMasters), Associate Chief Nursing Officer for the Scottish Government, interesting for insights as to how England might improve its service too.

HM

I happened to meet in the foyer of the Crowne Plaza on Monday night Ann Pascoe, @A_Carers_Voice, somebody who I have not only liked a lot on Twitter, but whose work on rural ‘dementia-friendly communities’ I have massively respected for some time.

Ann Pascoe

Likewise, it was really nice to catch up with Caroline Bartle (@3SpiritUKNZ), who very kindly once did an infographic of my book ‘Living well with dementia’.

infogram

I met in the poster session Prof Mary Marshall to whom the Stirling School in design in dementia owes a huge amount. I owe a huge amount to Prof Marshall too, as the Notting Hill masterclass which I once attended got me first interested in this subject a few years ago (I had a long chat with Prof Marshall there.)

1 Mary Marshall

There were not idle tokenistic sops to people living with dementia, and their closest ones, in the whole conference. They were at all times integral to the fabric of the conference.

For example, the seating arrangements in the main Argyll conference suite reflected the special respect given to people with dementia and those closest to them.

opening ceremony

The substance of the conference for the most part was of an exceptionally high standard in policy; there was next to no shilling of commercial projects.

The work from Alzheimer Scotland (@alzscot), including, predictably, the work focused on autonomy and dignity, and human rights, was showcased in an impressive way. Their work hangs together as a coherent, forceful narrative of meaningful significance for the Scottish jurisdiction.

It also has clear implications for how England conducts itself south of the border, notably, for example, in a right to timely diagnosis, and a right to timely care and support (including proper coordination of care and support).

care practitioner

In common with Scotland, England is trying to tackle hard the inappropriate use of antipsychotics. Dr Karim Saad (@KarimS3D) gave an excellent talk on this subject, drawing on recent findings from the ALCOVE2 study.

Karim

Scotland, in fairness, seems to be having less trouble with its policy than England is.

eruption

There was a very good sprinkling of cutting-edge research relevant to all practitioners in the field.

caregiver burden

For me, the conference had the feeling of a happy wedding without any of the arguments.

Here are Agnes and Donna.

Donna and Agnes

Whilst originally ‘unkeen’, I ended up having a wonderful time at the “Gala Dinner”. The entertainment – traditional Scottish music and dance – was amazing.

gala dinneragnesgdGala dinner 2

I was able to chat with Agnes and Nancy for some time. What a joy.

Elaine Hunter (@ElaineAHPmh) gave an excellent presentation on the transformative changes which had happened around the workforce in Scotland, including leadership from allied health professionals.

Elaine Hunter

Without doubt, a skilled workforce for the provision of dementia services is essential, not gimmicks.

1 Skilled workforce

I consider Helga to be a true friend too. Meeting Helga was akin to being wowed by Lady Gaga.

Helga and Shibley

I had last felt like this when I met Norman McNamara (@norrms) at the Queen Elizabeth II centre in London, Westminster.

I learnt a lot from the all-day workshop on building dementia friendly communities.

Over lunchtime, Joy Watson gave a brilliant ‘Dementia Friends’ (@DementiaFriends) session. I, in fact, was total awe as I am also a ‘Dementia Friends Champion’, and discovered many tips how to run my sessions in future!

1 DF Watson

This is a brilliant film exhibiting the passion which Joy puts into her Dementia Friends sessions.

Karishma Chandaria (@Karishma1000) chaired this exceptional day’s workshop, called a ‘masterclass’ on dementia friendly communities, which indeed mentioned the code of best practice for dementia friendly communities currently under consultation.

1 Karishma and best practice

Chris Roberts made time to hand out flyers for membership of the ‘Dementia Alliance International‘, an unique campaigning group run wholly by people living with dementia.

Chris DAI

This Conference mapped topics clearly onto people living with dementia and caregivers, for which the organisers of this event must be heavily congratulated.

Next year’s Conference will be in Slovenia. I’ll be there! Bring it on!

Slovenia

 

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