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English dementia policy may be weighted too much towards prevention, diagnosis and future cure

cake slice

In the words of Ian Dury and the Blockheads, there are indeed “reasons to be cheerful” about the English dementia strategy. We need a strategy, but we need to think about the imperative for “the cure” while appearing to neglect finer details of care. Furthermore, the actual quality, as well as quantity, of diagnosis merits scrutiny.

The need for a strategy

Our English dementia strategy has some key prongs from the clinical perspective – prevention, diagnosis, care, support, palliative care/end of life approaches and cure. How these components are balanced has practical implications for funding and resource allocation. Underpinning this is the need for high quality research, in both cure and care, qualitative and quantitative, non-molecular and molecular, and so on.

England currently does not have an up-to-date dementia strategy. The last ‘five year plan’ expired in 2014, and was supposed to be renewed. Baroness Sally Greengross, the previous chair of the All Party Parliamentary Group on dementia, made clear many times that the intention would be to recapitulate what had worked (or not) in the document from 2009 before progressing. This work, if indeed done, has never been published to the best of my constructive knowledge.

There are regional differences in national strategies, although the benefits of national plans have been described at great length elsewhere (an initiative spearheaded by the charity Alzheimer’s Disease International). Many feel that the first and only English strategy to be published by the Department of Health so far, entitled “Living well with dementia”, is very heavily weighted towards diagnosis and combating stigma through initiatives such as ‘dementia friendly communities’. This is in comparison, say, with the Australian jurisdiction which emphasises, it is said, primary care.

Karen Dening last year mentioned in the Dementia Congress in Telford that cooking dementia policy was ‘like cooking a cake’. Karen who is Director of Admiral Nursing for the leading charity Dementia UK, explained that making a cake required an understanding of the fine balance of ingredients. Too much of one ingredient (or too little) could, in theory, “spoil the cake”.

The importance of the cure but at what cost?

Indeed, the meme “care for today, cure for tomorrow” does merit scrutiny. Take ‘the cure bit’ for a start. In the same way that medicine might provide a cure for a type of cancer, such as an aggressive haematological condition, it might provide a cure for a type of dementia. In other words, in reality, the ultimate “cure for dementia” is likely to arrive in an incremental, piecemeal, gradual fashion for different types of dementia. And the unexpected might happen – for example, immunomodulators might find a ‘new market’ disruptively in the “fight against dementia”.

As such, you don’t ‘cure a headache’ with radical neurosurgery consequent upon sophisticated neuroimaging. You are likely to treat the symptom with a paracetamol. And the same logic goes for asthma and bronchodilators.

In the history of drug development for dementia, the debris of “repeated and costly failures” is a formidable one. But then again it is argued that no omelette was ever made without cracking eggs. It is said, for example, that between 1998 and 2012, there were 101 unsuccessful attempts to develop drugs for Alzheimer’s disease, with only three drugs gaining approval for treating symptoms of the disease.

In the phase before the theoretical obliteration of dementia in some future year, it is likely that care will also be required for tomorrow as well. This is because in someone who is being tried on an orphan drug for dementia a management strategy is likely to include also cognitive techniques, such as cognitive stimulation therapy, currently being examined for the NICE guidance on dementia to be published soon.

Nonetheless, any cures for dementia are to be welcomed not least because they offer hope. The worry, of course, is that there is a “zero sum gain”, in that if people are reaching for their pockets to fund research charities they are less inclined to fund social care for people living with dementia for today.

We have to talk about care

Even with talk of “precepts” from the Budget of last year, social care, not having been ringfenced since 2010, is still on its knees. Public health, which is supposed to deliver the risk mitigation strategy, for dementia has also been an unwise cost saving.

Social care is not essentially about bailing out the NHS in its ‘funding deficit’. It is as a profession concerned about enabling and protecting its client group. I feel few areas are as important as dementia for this.

Dementia, unlike cancer, has no specified “care pathways”. There are more than a hundred causes of dementia, depending on how you count them, and indeed every person with dementia is a unique individual. Integrated person-centred care pathways, and advance care planning especially in light of substantial comorbidities (involving of course carers), would do much to mitigate against the confusion and uncertainty which often accompanies the subsequent trek of a person with dementia through the maze of services.

The minimisation of the rôle of clinical specialist nurses, unlike cancer, is a deeply embarrassing one. The repercussions on the weaknesses in pursuant policy, including continuity of care in different care settings and delivery of palliative and end-of-life approaches, are glaringly obvious to clinicians currently working in dementia care today.

Prevention and seeking the diagnosis

The ‘healthy body, healthy mind’ campaign makes sense in a view that the prevalence of dementia in England  has been said to be falling. There are of course exceptions to every rule. We are all aware of people who’ve completed a healthy treadmill stress test for angina, without problem, only to fall dead in the car park.  Being educated, described as reducing your risk of dementia, did not stop Dame Iris Murdoch or Baroness Margaret Thatcher developing dementia. But progression also means preventing dementia progressing at a fast rate – in the future, maybe wearables and other technology might help in real time.

How a person or their closest ones seek a medical diagnosis for dementia was not straightforward, even before NHS England introduced its disastrous, and ultimately temporary, initiative to provide financial incentive for the diagnosis of dementia. A lot depends on the coping strategies of the people seeking diagnosis, as well as whether the benefit of a diagnosis is more beneficial than any ensuing stigma.

Many people report being “terrified” of then going to memory clinic, and a long wait is akin to ‘justice delayed is justice denied’. But an accurate diagnosis of dementia is important ultimately. General practitioners, already facing a bureaucratic and demand tsunami, may not have adequate resources or training necessarily to feel comfortable, although there is no reason why general practitioners cannot be also the ‘specialists’ making the diagnosis.

But likewise, people with unexplained symptoms, languishing without a diagnosis, is not on. People do deserve to know what medical diagnoses might apply to them. Physicians and other professionals would prefer people living with dementia not to be propelled into a crisis or move to residential setting involuntarily.

Furthermore, there is a school of thought that a correct diagnosis of dementia sums up the notion ‘knowledge is power’. Armed with the information, you can make reasonable adjustments just as for any physical disability, for example memory or visual aids, better signage around your accommodation. It gives you better bargaining power as an upholder of disability rights, as well as gives you specific opportunity to plan for the future, for example power of attorney or will, (on legal loss of capacity or ultimately death.)

Whilst there is a huge emphasis on diagnosis in current English dementia policy, there is consensus that the quality of how the actual diagnosis is closed could be improved in very many cases even now (see an excellent review here).

Conclusion

With so many vested interests involved, the cooking of this particular cake is bound to be complicated. But hopefully with time issues will become much clearer. This is ultimately for the benefit of persons with dementia and their closest ones.

[The author, Dr Shibley Rahman, of this blogpost (@dr_shibley) is an academic physician specialising in dementia. BBC Radio 4 will air a programme in the ‘File on 4′ series entitled “Has a drive to increase the diagnosis and find a cure been effective?’ at 20.00 on 23rd February 2016, presented by Deb Cohen (producer, Paul Grant). Details of this episode of File on 4 are on the BBC website here.]

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Trivialising dementia – too much inappropriate rocking of the boat?

When I wrote my highly successful book, “Living well with dementia”, using the phrase deliberately from the 2009 English dementia strategy document for England, I never knew the phrase was being bastardised so much for often very trivial initiatives in dementia.

On the other hand, I had huge delight in seeing its immediate relevance to a carers’ support group I went to last week.

I feel deeply hurt that the serious issues in my book, such as advocacy for mental capacity, the presentation of the cognitive neurology of the dementias, or the use of ambient-assisted technology have not been widely discussed amongst the wider community.

In that, I feel the book has failed.

I welcome proposals for the next Government to maximise money into actual service, and to re-establish health funding in line with other comparator countries.

Commissioning in dementia is now not based on what is best for the person for the person with dementia, but what is best for your Twitter commissioner friends.

I look forward to the Health and Wellbeing Boards playing a pivotal rôle in establishing some sort of normality for what commissioning in living well with dementia might be as a value-based outcome.

The strangehold of “shiny”, “off the shelf” “innovative packages”, in the drive for the current Government to ‘liberalise’ the financial market in dementia has acted for a cover for disturbing, unacceptable cuts in dementia service provision in the last few years.

I remember ‘boat rocking’ the first time around from the elegant work of Prof Debra Meyerson.

I do not wish to promote frontline professionals, many of whom have spent seven years at least at medical school or in their nursing training, to become lambs to the slaughter in the modern NHS and social care.

Keeping it real, we know that real frontline professionals in medicine and social care, even if they are not in a downright toxic environment requiring whistleblowing, can find it dangerous being risk appetitive.

Indeed, being risk appetitive, while great for innovation and leadership, can literally be deadly for patient safety.

The next Government has enough on its hands with enforcing care home standards and sanctioning for offences against the national minimum wage for paid carers as it is.

We have to think for a second for the vast army of paid workers in the NHS, as well as the rather well paid people who like their shiny new boxes, I feel.

The schism between the social media and what is happening at service level I think is most alarming, and perhaps symptomatic about how the health and social care services have begun to work in reality.

All too often, I am having first hand experience of busy frontline nurses being dragged in front of entrepreneurs in their local dementia economy to hear shills beginning, “I don’t have first hand experience of caring in dementia, but…”, before the hard sell.

This is tragically being reflected on the world stage too, though I do anticipate that the G7 legacy event from Japan which is looking carefully at their experience with care and support post diagnosis, next year, will be brilliant.

It is important for leaders in dementia to have authenticity.

I have severe doubts and misgivings about what gives the World Dementia Envoy the appropriate background and training in dementia for him to be in this important post.

It is all too easy for ‘thought leaders’ in corporate-like medical charities to have no formal qualifications or training in medicine, nursing, or social care, and opine nonetheless about weighty issues to do with policy.

I am concerned that the global ‘dementia friendly communities’ policy plank appears to have been straightjacketed through one charity in England, when it is patently obvious that various other charities such as the Joseph Rowntree Foundation have made a powerful contribution.

The media have largely not engaged in a discussion about living well with dementia, but engaged simply with Dementia Friends or a story arising out of that.

I am alarmed about the lack of plurality in the dementia research sector.

I think the All Party Parliamentary Group (“APPG”) for dementia have done some valuable work, but their lack of momentum on specialist nurses including Admiral nurses, spearheaded by the charity Dementia UK, seriously offends me.

I am sick of how the notion of ‘involvement’ of people with dementia has been abused in service provision mostly, although I am encouraged very much by initiatives such as from DEEP and Innovations in Dementia.

I think there have been genuine improvements in engaging people with dementia in research, through a body of work faithfully peer-reviewed in the Dementia Journal looking at heavy issues such as the meaning of real consent.

I am now going to draw the line of tokenistic involvement of people with dementia to front projects without any meaningful inclusion.

And in fairness, this tokenistic involvement is, I am aware, happening in various jurisdictions, not just England.

All too often, “co-production” has become code for ‘exploitation’ rather than ‘active partnership’.

The prevalence of dementia is actually falling in England, it is now thought.

The ‘dementia challenge’ was our challenge to making sure that we adequately safeguarded against people rent seeking from dementia since 2012.

In that, I think we have spectacularly failed.

I am overall very encouraged, however, with the success of the huge amount of work which has been done, including from the highly influential Alzheimer’s Society, and from the communitarian activism of “The Purple Angels”.

All this ‘radicalism’ has taken on a rather ugly, conformist twang.

radicalism

Now is though time to ‘take stock’, as Baroness Sally Greengross, the current chair of the APPG on dementia, herself advised, as the new England dementia strategy is being drafted ahead of the completion of the current one in March 2015.

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The real influencers of English dementia policy aside from #G8dementia

top 100

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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