Jeremy Hughes

The energy of ‘Dementia Friends’ needs to be sustained as we begin to build the future

Shibley Rahman 2 Comments

I had a terrific time between 2 and 5 September 2015 in Ljubljana in Slovenia for the 25th Alzheimer Europe conference: the theme of the conference (“Conference”) was “Putting strategies and research into practice”.

Helga managed to catch me on September 1 to invite me to come as an observer to the AGM. I enjoyed meeting Jens for the first time. This was the first time I’d seen Jean Georges chair a meeting, and there wasn’t a peep of dissent!

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Dementia, fundamentally for me and many others, is not about the European market, but about the European people. And here it’s useful for me to see where our endeavours, nation states of the United Kingdom, fit into the rest of the world (Alzheimer Europe last week and Alzheimer’s Disease International in Australia in April 2014). A pervasive thread in the development of global policy, done more in an incremental than revolutionary way on the whole, has been the ‘featuring’ of people living with dementia and carers. It’s become clear to me that people with dementia and carers have developed autonomy as independent groups on the whole, in that their views cannot necessarily be considered to be the same. The language has shifted subtlety from ‘engagement’ to ‘leadership’.

In talking with many people around the world, it’s abundantly clear that there is no comparison with where we are now compared to a few years ago. This does not mean we still haven’t got a long way to go. An imminent problem in the English policy is the future of social care funding. In the previous few years, there has been a relentless decrease in social care funding, which has not been ringfenced. The health of the National Health Service itself is dependent on the overall wellbeing of the social care system. The policy of dementia friendly communities took us from a very low baseline, that is people with dementia not feeling part of their community.

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The fact that there has been such a huge sign up to ‘dementia friendly communities’ specification programme is a testament to the interest in the notion of dementia friendliness, but, as the Alzheimer’s Society will be the first to admit, this is not meant to be a tick box exercise but the start of a commitment to making a community ‘dementia friendly’. Such communities are meant to promote independent living, not isolation.

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Some of the implementation of this inevitably is treating people with dignity and respect which in themselves are cost neutral, but the onus is on local authorities and employers to meet obligations under the Equality Act (2010) as the Regulations of this Act make clear dementia is a disability. The announcement by Marc Wortmann, the CEO of Alzheimer’s Disease International (ADI), will aim for ADI to be a signatory to the United Nations Convention on Rights of People with Dementia is highly significant, not least because of the clarity of leadership of the ADI in Marc and Glenn Rees, but symptomatic of a healthy relationship between ADI and international bodies such as WHO and the UN. Alzheimer Europe have had a longstanding willingness to sign up to the UN Convention. These developments, whilst gradual, all act together to make equality a reality, giving people with dementia true ’empowerment’ as nation states become accountable for their behaviour.

I am incredibly curious as to what other nation states think of the UK’s ‘Dementia Friends’ programme. ‘Dementia Friends’ is a mechanism, having started off in the UK in England, by which any member of the general public can sign up for a short 45 minute information session containing activities to learn about some basics of dementia. You don’t need to have heard about dementia beforehand. It’s a programme which is run by volunteers who themselves get trained up from the ‘Dementia Friends Champions’ programme. Fundamentally, our international colleagues are very impressed, and some blatantly envious.

But the endpoint, as such, is not whether there are one million or 4 million dementia friends, but it is encouraging that more than one million ‘dementia friends’ exist in the UK. All dementia friends have been encouraged to turn their understanding into a simple pledge, and it doesn’t matter how large or small this pledge might be. It could, say, write to a local newspaper to complain about the language referring to a person living with dementia if deemed derogatory. The Dementia Friends campaign, which was clearly signposted in the 2009 England National Dementia Strategy “Living well with dementia”, has helped to turn around the giant supertanker that is prejudice and discrimination towards dementia.

I hate military analogies, but all this means that the “war against dementia” is over. It is not in fact a “war against dementia”, but a war against poor dementia care standards, or a war against bigoted prejudice against people living with dementia. There is so much that can be done through a national programme, but the fact that there has been one at all, which has run smoothly, is a huge achievement. To take further the military analogy one is reminded of ‘Mission accomplished’. The “Mission accomplished” speech by George Bush from 2003 is extremely well known. It arises from a large barrier shown on the USS Abraham Lincoln aircraft carrier stating ‘Mission accomplished’, at a time when the vast majority of casualties were yet to occur. We don’t have a working definition of ‘post diagnostic care’, but Geoff Huggins at the Conference presented an overview of the various EU workstreams involved.

One such work stream, for example, is in residential care.

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I’ve now heard Jeremy Hughes, CEO of the Alzheimer’s Society, speak about Dementia Friends several times now. And, a bit like giving the Dementia Friends sessions myself as a Champion, I always glean a tiny incremental addition every time.

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I recently reviewed diversity in dementia around the world in my thesis ‘Living better with dementia‘, with forewords by Kate Swaffer, Chris Roberts and Beth Britton. It’s quite easy to under-estimate how bad it can be for people with dementia living abroad, but I feel that we can learn from other jurisdictions and their awareness campaigns.

Here was the context in Morocco presented last week – an example of a very successful awareness campaign instead.

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On the other hand, I have reviewed abstracts where there’s been, say, a release of balloons signifying an ‘end to Alzheimer’s’, but one does wonder about the efficacy of such publicity stunts in making a real difference. That difference is whether people with dementia are accepted in society as equals and as valued citizens. I’ve been hugely impressed with developments from the Alzheimer’s Society Ireland, notably their ‘Listen, learn, link ‘ campaign (“#forgetthestigma”).

 

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And the ‘out of the shadows‘ campaigning theme in Ireland has been effective. This reflects the notion of some people living with dementia becoming ‘warehoused’ and given inappropriate antipsychotic medications, for example. At worst, we occasionally hear about physical restraint which clearly implicates human rights. At another level, it’s about people in society simply being able to say ‘I live with dementia’, and not then be the recipient of funny looks, or pity.  Helga Rohra, Chair of the European Working Group of People with Dementia. is another such person who has emphatically come ‘out of the shadows’.

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There has been a shift in tone and content in reporting on dementia in mainstream media too, I feel. The progress has been sluggish perhaps, but it’s evident. I have found myself finding stigmatising language in the headline of a very positive story about dementia many times.

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I have written many times on the potential weaknesses of the term ‘Dementia Friends’ in inadvertently and unintentionally promoting otherness and victimhood, but one can only assume that ‘Dementia Friends’ is consistent with the drive behind building ‘dementia friendly communities’. The narrative of ‘dementia friendly communities’ has definitely evolved further to ‘dementia inclusive communities’ or ‘dementia accessible communities’, but the term ‘dementia inclusives’ would certainly seem odd to many. I have likewise had qualms about ‘#dementiachallengers’, in that it’s unclear to me what the challenge is – although one challenge certainly is the lack of prioritisation of social care funding and training in dementia. Nonetheless, logically, one can only assume #dementiachallengers have a common bond in working on the Prime Minister’s Dementia Challenge.

 

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I have had the hundred or so ‘Dementia Friends’ I have ‘created’ produce very diverse pledges. I have been struck though at the genuineness and sincerity of these pledges though. These have included a salaried GP thinking about how to talk about dementia with patients more effectively, or a nutritionist in training to thinking about how to promote eating well with dementia on a hospital ward.

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I think changing the way people talk is going to take time – and the potential danger is of course preaching to the converted. I think tackling this might involve something as fundamental as making sure responsible reporting of any mental health issues, including dementia, are on journalism courses. Journalists pride themselves inevitably on their high degree of professionalism, so they shouldn’t be coming up with such facile headlines on such a regular basis.

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The Alzheimer’s Society are part of a wider international narrative about the creation of dementia friendly communities. As an aside, there is quite an interesting conversation to be had about whether residential care (including care homes) are part of the ‘community’ – and many strongly believe that they are indeed ‘community hubs’. The danger however for ‘Dementia Friends’ is that becoming a ‘Dementia Friend’ becomes a quick fix for private care providers to say staff are ‘trained’ in dementia. The Alzheimer’s Society are very clear that Dementia Friends is not ‘training’ for such a responsibility or rôle, and to imply that having signed up as a Dementia Friends means that you are of a sufficient standard in dementia to care in a care home is wrong. The current manual given to all Dementia Friends Champions states categorically that the Dementia Friends sessions are not ‘training’. I personally though would like to see the development of accessible training for people in caring roles at home or in residential homes, but the questions remain cost, equity, and quality. Possibly a ‘Dementia Friends Plus’ for professionals interested in an extended period of such service improvement might be part of the solution at least.

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The Alzheimer’s Society of course do not work in isolation. The voluntary sector as a whole is vital in ensuring support for people with dementia and carers, but should not be expected to be doing so in the context of relatively underfunded services.

It’s hard to ‘measure’ the ‘success’ of Dementia Friends, and indeed I have brought up the issues of relying on the ‘numbers game’ in proving an initiative’s worth.

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We do live in times where everything does have to be costed carefully. I think we do need to be thinking about having the system properly resourced at all levels, including acute hospitals, primary care, hospices, dementia advisors, dementia support workers and clinical nursing specialists, but all interventions have to be financially do-able as well as promoting health outcomes. I even said so in my own talk in Ljubljana (and thanks very much if you managed to make it there!)

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Why does Jeremy Hughes appear to have done a ‘volte face’ over anti-dementia drugs?

Shibley Rahman 4 Comments

I have previously discussed the Alzheimer’s Society Drug Discovery Programme video here.

About 13-14 seconds in, Fiona Phillips – who is actually an outstanding campaigner for dementia causes – says clearly, “Current treatments only help with symptoms for a short while.”

About 15-16 seconds in, Fiona Phillips says, “They don’t stop dementia from progressing“.

The current CEO of the Alzheimer’s Society is Mr Jeremy Hughes.

In the July-August edition of Journal of Dementia Care, volume 12, number 4, page 12, for 2013, Hughes states the following in response to an article by Dr Martin Brunet in the same journal.

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And this has been clearly at odds with the NICE guidance.

Here is for example what the judicial review on these guidelines had demonstrated.

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I must admit that this is only going from bad to worse.

Today, in the BMJ, Dr Peter Gordon wrote as follows in an article entitled, “No evidence exists that “anti dementia” drugs modify disease or improve outcome” (BMJ 2014;348:g2607):

 

“More than three months have passed since the G8 dementia summit was held in London, allowing time for critical thinking over its most laudable aim to “create disease modifying treatment to try to stop, slow, or reverse the condition.”1 This was less than a year after I gave an interactive talk based on one question: “What do we mean by Alzheimer’s disease?”2

In my talk I presented what evidence told us about currently available “anti-dementia” drugs, that, as yet, there is no conclusive evidence that they modify disease or improve outcome.3

In sharing this evidence with my audience of health professionals, many seemed to exhibit furrowed brows and looked at me as if I were an “outlier.” During and after my talk the evidence I presented was challenged by several of those who attended. These drugs, they confirmed, in their understanding, did modify outcome and that is what they told patients. It was further explained to me, after my presentation, that this was the “prevailing” understanding.

Leading world experts established at the G8 dementia summit that there was no evidence that existing drugs modified disease, and the World Health Organization director-general Margaret Chan summarised this for G8 in the following way, “in terms of a cure, or even a treatment that can modify the disease, we are empty-handed.”4

This story seems to show that my profession was perhaps not following evidence but, rather, wishful thinking and, indeed, mythology. I am left wondering why this happened and why such evidence was not properly shared with patients. It also occurs to me that industry, politicians, and national leads seem to have made little effort to challenge this “prevailing understanding,” at least until the “anti-dementia” drugs had largely come off patent.5 Our patients deserve better. They deserve truth. We all need to do better with that cherished and high ideal of informed consent.”

 

There is clearly something going wrong with the quality of debate about dementia from clinicians and non-clinicians.

I remember having immense difficulties with this issue in the final chapter (18) of my book ‘Living well with dementia’, as per the following extract:

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It would be helpful to know if Mr Hughes has changed his mind between then and now, with the #G8dementia having intervened; of course it is possible that the Drug Discovery programme video is genuinely at odds with the views of Hughes. It is noteworthy that Pharma themselves are sending out different mood music concerning the efficacy of their “anti-dementia drugs” which I mention here in my G8 dementia summit survey blogpost.

 

All of this really does matter if we as academics with some knowledge about this area are to conduct the correct discussion about dementia on behalf of persons with dementia and carers including unpaid caregivers.

 

Thanks...

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

Shibley Rahman 3 Comments

Trade fair for blog

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So why such a focus on pharmacology?

Why so little on ‘person centred care’?

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

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

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

Anna remarked recently,

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

Anna Hepburn continued,

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

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

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

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

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

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

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

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

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

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

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

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

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