If we’re ‘curing’ Alzheimer’s disease, can we ‘solve’ delayed discharges too?


The famous ‘Two cultures’ speech was delivered in 1959 at the Senatre House in Cambridge by CP Snow, controversially on the growing schism (growing since the Industrial Revolution, at least) between the arts and sciences.

Coincidentally, 37 years later, I did finals in the same location in neuroscience for my Bachelor of Arts degree, with a mind to do a PhD in young onset dementia at Cambridge (which I then did).

I was really struck by the “two cultures” yesterday. In an ideal world, we shouldn’t have to fight about it – but as some will tell you on one particular political side, money does not grow on trees, but curiously there always seems to be enough money for certain types of research.

I found the Horizon programme on a cure for dementia good in as far as it went. It wasn’t really on a cure for dementia, but mainly an advert for some grant programmes in biomedical research in Alzheimer’s disease.

Nick Fox, now a Professor at Queen Square and Director of the Dementia Research Centre there, but who was getting towards the end of his protracted time as Specialist Registrar to Prof Martin Rossor when I was a junior there, explained how voxel based morphometry (specialised brain scanning) could be used to confirm a case of posterior cortical atrophy, previously undiagnosed.

The pitch though was entirely to miss the point. It would have been much more helpful to know what the precise rehabilitative offering for the patient with posterior cortical atrophy was – the patient himself described his own vision as “a jumble” in his own words.

There was hurried talk of tau markers in the cerebrospinal fluid. But a lumbar puncture is an invasive procedure. And a cure which could stop the building up of toxic tau would have been useful to discuss, but Fox totally skirted around what the benefit of his hard won diagnosis was.

If you take the view that the precise name of the dementia is relevant, but the dementia is merely a pathological description of a buildup of tau in the brain somewhere, that helps you with your sledgehammer approach of taking an anti-tau drug forward. Then it means Fox should have entered into some sort of debate as to whether we are all ‘tauopathies’ now, ranging from Alzheimer’s disease, to frontotemporal dementia or posterior cortical atrophy.

Does this make the underlying genetic basis irrelevant? I think somewhat the arguments that posterior cortical atrophy is a variant of Alzheimer’s disease have always been rather anaemic, without reference to why there is such selective neuronal degeneration in the visual parts of the brain, and without reference to the underlying commonalities in genetics basis.

But the problem for Fox with his ‘dementia can be spotted now a decade before symptoms approach’ is the lack of answer to what proportion of people with slightly aberrant brain scans or markers, at what time, would be taken forward for a possible therapeutic treatment.

We saw elsewhere a different person, made patient, through apolipoprotein genotyping, who had become quite distressed about the lack of genetic counselling.

The actual situation for Fox is that there are hundreds or thousands of neurologists or general medics who do not even know what the clinical presentation of posterior cortical atrophy is, so it is no wonder that such patients both here and abroad get taken round the houses, invariably through an ophthalmologist or eye clinic, over years, prior to a diagnosis.

The programme was predictably full of ‘sufferers’ and ‘devastating’, shock doctrine stuff, rather than ANY acknowledgement of any people with dementia leading fulfilling lives. I don’t have any ideological problem with people crying on TV as it represents an authentic emotion.

The narrative however was fraudulently set up as an epidemic of dementia – despite the fact it is now widely conceded that the prevalence of dementia is falling – and here’s the sunny uplands of cure to solve everything. It was good to see cognitive neurorehabilitation get a mention though, even though it was essentially bordering on window dressing.

Quality of care research would be desirable too, as well as good quality of life research.

This was yesterday’s headline in the Times.


The problem was made more graphic with genuinely horrific stories from the Health Ombudsman’s report on poor quality of elderly hospital care, focusing on delayed discharges. But the data hailed from 2014/5, that’s a good two or three years after the Prime Minister’s Dementia Challenge, one year prior to the Prime Minister claiming he wanted the UK to be ‘the best country to have dementia in by 2020′ in a completely deluded manner, with social care funding on its knees.

The social model of disability correctly admonishes calling all people with dementia as ‘sufferers’ or ‘victims’, but rather holds them to be active participants in citizenship with fundamental human rights, such as a right to dignity. And yet another costly report has shown what we knew already – of people languishing stuck in hospital, who cannot be discharged. We knew all this prior to the last general election too. People have sadly suffered at the hands of the NHS and social care due to mismanagement.

Don’t get me wrong. Biomedical research is important. I followed the tweets from the British Geriatrics Society conference, and one of the tweets involved somebody with dementia who had entered into a coma due to a drug prescribed for delirium. This example shows why it does matter to diagnose some types of dementia (diffuse Lewy Body disease), and the need for clinicians to recognise delirium superimposed on dementia.

A cure for dementia before the onset of symptoms would be remarkable, especially for some rarer young people who face a near-certain likelihood of developing one of the strongly inherited dementias.

But we DO need to face facts, Dementia Awareness Week or otherwise, surely? If we’re ‘curing’ dementia really by focusing on a handful of manageable subtypes such as familial Alzheimer’s disease only, can we ‘solve’ inequitable delayed discharges too for an increasing number facing Jeremy Hunt’s NHS?



It’s the diagnosis and research stupid, but don’t forget about care


Anyone linked to the UK government would prefer you not to talk about the crisis in social care. This gets in the way of shimmering spin about current dementia press releases.

But we know that the patient experience of people with dementia and carers is often destroyed by delayed discharges. If your train is late, it’s inappropriate for you to be labelled ‘a platform blocker’. This government, like the previous one, is failing to get on top of this problem.

If you’d believe the grass is greener on the dementia diagnosis front you’d be wrong. People languishing without a formal diagnosis is not right. But if we want high quality prompt diagnoses we should be able to pay for them.

Jeremy Hunt mysteriously views dementia as the ‘jewel in his crown’, but in fact there is a shared ethos between the NHS and English dementia strategy. That is, a stench of the ‘something for nothing’ culture – like paying #juniordoctors to stretch their work to seven days for the same money.

The Dementia Discovery Fund, launched today at the Alzheimer’s Research UK conference in Manchester by Jane Ellison MP, will pay for the development of new drugs for dementia. The announcement is seek to confirm that some of the world’s largest pharmaceutical companies have joined forces to seek new treatments for a group of brain diseases affecting 850,000 people in the UK.

They include Biogen, GlaxoSmithKline, Johnson and Johnson, Lilly, Pfizer and Takeda. The giant firms have signed up with Alzheimer’s Research UK to form a ground-breaking public-private partnership.

This is highly reminiscent of the approach which was taken for the development of drugs for HIV. Some time ago, ater spending a few years laying a foundation to streamline clinical testing and drug development, leaders from the US Food and Drug Administration body (“FDA”) took their Critical Path Initiative (CPI) from concept to implementation.

There remained public concerns about drug safety, dangerous imports, and rising pharmaceutical costs, much like today here in the UK for dementia. But here the UK taxpayer is in effect helping to underwrite drug development costs for these blockbuster revenue companies. Whilst political leaders use the limp mantra ‘you shouldn’t have to choose between cure and care’, in effect the choice has been made. Care is on its knees.

The famous political saying from Carville is of course ‘it’s the economy stupid, but don’t forget about healthcare.’ With the current Government’s growing economy, there is little joy from the people who can deliver potentially high quality professional care – nurses and doctors – who are unanimously demoralised and destroyed by Jeremy Hunt and his colleagues, wherever they may be.

The shambolic state of the English dementia policy could not have been made clearer by the lack of discussion of care pathways and clinical specialist nurses in dementia. What resulted was a underwhelming appalling document known as the ‘Implementation Plan’ for Dementia 2020 from the Department of Health.

The fluffy ‘health MOTs’ for people in their 40s is not evidence based at all. It is the pipedream of a non-clinical policy wonk, wishing to ensnare the ‘worried well’ into the lare of the private insurance industry, as I describe here. Nobody is of course objecting to true professional health promotion, but there are limitations to promoting ‘brain health’ – in the same ways to improve a healthy leg has limitations for you dealing with a dislocated hip or fractured neck of femur.

The relative lack of substantial professional clinical input really shone through in many areas, such as the lack of discussion of co-morbidities. Many of the ideas are gimmicks which have been recycled ad infinitum in various guises. The aim had been to assess ‘the lessons learnt’ from the only ever English dementia strategy, “Living well with dementia”, in 2009, but clearly the Department of Health cannot even been bothered to do that, not wishing perhaps to scrutinise the appalling state of social care or the high number of inappropriate referrals to memory clinic.

Or maybe the Department of Health do not want to discuss why primary care is not well placed to deliver on dementia diagnosis, when that arm of the profession is suffering a recruitment crisis, overwhelmed by bureaucracy and regulation, and is relatively grossly underfunded.

If the rest of English dementia policy were in a fit state, then a Drug Discovery Fund would be something to shout about. But the fact that there were 101 spectacular failures in drug development for dementia between 1998 and 2012 is also a fact.

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).


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.]

The two cultures and the dementia revolution

dark matter


In the Senate House, on 7 May 1959, C.P. Snow gave the seminal Rede lecture at Cambridge entitled “The two cultures and the scientific revolution”. 

One seminal passage goes as follows:

“Literary intellectuals at one pole—at the other scientists, and as the most representative, the physical scientists. Between the two a gulf of mutual incomprehension—sometimes (particularly among the young) hostility and dislike, but most of all lack of understanding. They have a curious distorted image of each other.”

C.P. Snow’s  blistering attack on the arts, promoting the importance of the scientific culture, was in the tradition of a former conflict between the arts and sciences viz Matthew Arnold’s “Culture and Anarchy” (published in 1869, viewable here on Project Gutenberg) and H.E. Huxley (in the Royal Academy of Arts and elsewhere.) Arnold’s position, defending the arts, according to Prof Simon Shaffer, Chair of the history and philosophy of science at the Department of History and Philosophy of Science at Cambridge, is defined as a “defender of human values”.

Even today, if you were to study dementia in finals at Cambridge, you would do it in the Natural Sciences Tripos Part II rather than study literary accounts of dementia (such as John Bayley’s “Iris”) in English Part II.

Late in the 19th century and onwards in England, science had developed prestige, given science improved rights to access resources on the political stage. This indeed was a real cultural change. In Arnold’s world, the laboratory is not a central hub of culture compared to the new dominant scientific movement such as John Tyndall’s “scientific naturalism”.

Triumphantly, it was announced by the world that there would be a cure for dementia or treatment by 2025. I think this is exactly consistent with this ‘scientific technocracy’ of HG Wells’ “samurai” – called “evil” by the brilliant don at Cambridge and scholar of the English essay, FR Leavis. Like Leavis, I believe that this myth that scientific technocracy demeans our overall progress on dementia and understanding the lived experiences.

It is inescapable to conclude that in England that the social care system is currently ‘broken’.

I think it would be wonderful if some resources, in addition to enhancing shareholder dividend for Big Pharma or surpluses for Big Charity, could be diverted into finding breakthroughs in treatments for dementia. But it potentially it is a smoke and mirrors job to promote the ‘cure’ culture without addressing the ‘care’ culture.

And like C.P. Snow, we’re at danger of oversimplifying the dichotomy. Technology and innovation can be viewed as the creative part of science, and might be essential in improving care in dementia; creativity is thus important to both arts and sciences.

Living better with dementia is a vision I fundamentally believe in, for example, and one which transcends both cure and care. I do happen to believe that living better with dementia is possible by innovative ways in which one might live your life with dementia (as brilliantly reported for Dr Jennifer Bute recently.)

C.P. Snow’s lecture at Cambridge in 1959 came at a time when there could have been better representation of the sciences from decision makers in Government, but even then the claim always appeared to be science appeared to be downtrodden. You can hardly claim that science is downtrodden in 2015 with such emphasis on the scientific cure. Ironically, the English government as much now (if not more) is not predominantly composed of science graduates from a diverse range of universities, but from a pool of PPE graduates from the University of Oxford.

C.P. Snow can be legitimately viewed as an “anti-arts” by me, I feel. But I think the promotion of the scientific cure in dementia in 2025 is also, too, a modern alchemy. In the same way, there was magic in the way you could convert one substance to another by varying combinations of earth, wind, fire and air, I think there still remains a hope that by varying combinations of elements in chemical potions there might be an agent from Big Charity and Big Research which could ‘turn the tide against dementia”.

But this is to elevate science to a level of sophistication it may not merit yet. Most of the Universe, predicted with Earth veering towards a “large attractor” full of dark matter in 50-60 billions time, consists apparently of invisible dark matter exerting an influence on the visible universe we can’t understand.

There’s so much we don’t understand in science and specifically the future of the universe. At the time of C.P. Snow, Paul Dirac held the prestigious Lucasian chair of mathematics at Cambridge (a post recently held by Stephen Hawking); his seminal work consolidated the birth of modern cosmology and quantum physics, and indeed attracted the Nobel Prize “for the discovery of new productive forms of atomic theory”.

There is currently no reason to believe that understanding the molecular biology of dementia is at all any different. Whereas billions of neutrinos pass through us everyday, we have no idea what is passing through all those plaques and tangles in Alzheimer’s disease forming some of those 47 million people living with dementia currently.

We do not have sufficient monies for high quality research in care and living better with dementia, including lived experiences, compared to cures for dementia. This is a national and international disgrace. I believe that we are ‘due’ a revolution in dementia, but, unlike C.P. Snow, I don’t think it will be a scientific one.



England’s future strategy for dementia offers hope if articulated and implemented properly

What follows is a massive disservice as I take a policy wonk approach to outing the problems in our current English policy. You would better served in spending your time listening to Andy Tysoe or Tommy Whitelaw, whose efforts on dementia are truly remarkable. It is truly a sad indictment of our society that the impetus behind the G8 dementia and global initiatives in dementia may have been more to do with public-private handouts to boost an ailing industry, rather than a sincere wish to people currently living with dementia to live better. The “Prime Minister’s Challenge on Dementia“, from the Department of Health, Cabinet Office, and the Prime Minister’s Office, was probably more disappointing for what it didn’t say rather than what it did say.

The central issue for many is what the point of diagnosing a dementia is, “if nothing can be done about it“.

This might explain, in part, the policy stance that prevention of dementia, ‘healthy body healthy mind’, is a worthy cause. And indeed the policy initiative from the Blackfriars Consensus is helpful. In terms of opportunities for ‘wealth creation’, it offers opportunity for open innovations, such as ‘wearable technology‘, to come light and to become marketed. The present NHS sometimes appears to be more fixated about how much of its work can be exported abroad to make a profit than the effects of cuts on patient safety. That social care spending is now on its knees, consequent upon it not being ringfenced, is however a threat to patient safety; and the added legal problem with residential homes in private care is that information about staffing can be withheld from freedom of information requests due to being ‘financial sensitive’. Similarly, recent initiatives on whistleblowing, such as the Francis Review, have concentrated on toxic cultures in the NHS rather than residential homes. The NHS and care sectors are still likely to have patient safety problems, given the trend in the size of the NHS litigation budget. There is an argument for zero hour contracts in the care sector offering ‘flexibility’, but such arguments must be proportionate. For many, however, zero hour contracts offer poor job security. Many caregivers are below the national minimum wage. Carers do not have rights under the present NHS constitution. Currently, the system is kept afloat through the valiant work of a huge army of unpaid family caregivers, who often worry themselves about the lack of support they are given in doing their job. There needs to be a much more coherent framework of the regulation of paid carers, many feel, however, for the minority of caregivers who seem inadequately trained in dementia including risk assessment.

As a person living with dementia needs care needs, there is no doubt that the needs of carers need to be given a priority in a new English dementia strategy. Carers clearly do need support, not least because caring is psychologically, emotionally, financially, and physically draining. A person with dementia at some stage will be involved in a decision as to whether to stay at home, or to move into a nursing home or care home, for example. Unmet medical needs such as incontinence, falls or declining mobility often underlie why some people with dementia go into residential care. The reason many feel that post-diagnostic care and support is inadequate is because it is perceived that the organisation of it is haphazard, with stakeholders not communicating with one another. The silos cannot go on, and it’s not on that there seems to be no-one in overall control of dementia policy, or even directly accountable for it. The lack of communication between residential care in the community and acute hospital trusts helps to explain the logjam of some people with dementia experiencing delayed discharges. It is all very well to talk about ‘parity of esteem‘, but such calls sound hollow with slashes in funding in social and mental health care. And health is so much more than health and social care – it’s all to do with how we are able to lead our lives, including education, housing and transport, for example – and that applies to people with dementia and caregivers too.

Many people with dementia, and friends and families, feel that they have maximal involvement with the medical profession at the beginning and end of their experiences with dementia, with the annual check up serving little function other than to repeat investigations to emphasise what a person with dementia cannot do any longer. This is completely wrong, if you wish to reframe the argument from what a ‘dementia patient costs’ to what ‘value a person with dementia brings’. Add on top of this that the National Health Service is fragmented and geared up to be a ‘repair’ service rather than ‘care’ service. Sure, repair is important, but often repair can be avoided altogether if there is better proactive case management.  It is utterly deplorable that, even when the contributions of Marie Curie and Macmillan specialist nurses are undisputed, that there has been scant attention to the clinical outcomes and financial benefits of a national network of clinical nursing specialists (as described recently in the HSJ). The “Admiral Nurses” scheme would have massive benefit if England were to invest appropriately here. I am extremely grateful to campaigners such as Beth Britton for keeping the flame of reasonableness alive.

There is no doubt that the Alzheimer’s Society have assumed a market dominance, and this is of course good for the sustainability of this sector, but they must be able to campaign effectively on shortcomings of government policy, whichever government that is, to act as a good corporate citizen with license to operate and license to lead. Such a dominance in providers is not in the best interest of persons using the NHS, especially if the voluntary sector is to participate in clinical contracts (e.g. cancer care), so a preferred model of care to offer the post-diagnostic support infrastructure for dementia is likely to be alliance contracting as successfully implemented in other jurisdictions (e.g. New Zealand). English health policy is heading towards collaboration rather than competition, so it is important that service provision in dementia also takes the lead; legislation in England needs to give voluntary sector providers some long term security, such that they can develop the capacity to expand to help the NHS form resilient communities. A person-centred approach would mitigate against lack of continuity of care. Persons living well with dementia have a multiplicity needs, requiring the ‘whole person’ approach, not least reflected in numerous comorbidities. Part of the problem we have had in English dementia policy is the overprescription of antipsychotics (see the Banerjee report 2009), but if we invested in a workforce trained in personhood (using techniques such as life story) and addressed problems in communication, particularly in residential care settings, we could mitigate against such a high need need for antipsychotics inappropriately prescribed for alleged agitation and aggression.

I feel it is crucial now we take the NHS on a radical transformation from a patient-oriented service to a person-oriented one.  Broadening the explanatory perspective on illness to include social and psychological factors has expanded the remit of medicine into the realm of ‘healthy’ bodies. Again, this has been particularly evident in general practice. The promotion of wellbeing must surely be seen as integral to that. Wellbeing in general measures ‘individuals’ subjective perceptions that life as a whole is good’, thus there is a strong link to the fulfilment of needs. A biopsychosocial perspective alone is not enough for a full understanding of the patient’s experience of illness, which depends on his or her particular life story; for example rheumatoid arthritis in the fingers might have a more profound effect on a concert pianist than a long jump expert. Even if a person is diagnosed with exactly the same condition or disability as someone else, what that means for those two people can be very different. A care and support plan should truly reflect the full range of individuals’ needs and goals, bringing together the knowledge and expertise of both the professional and the person, and it should give parity of esteem to mental and physical health needs. But the ‘no decision about me’ has tended towards vacuous sloganeering – but it is quite telling that the World Dementia Council were so slow to appoint someone living well with dementia, and even then appointed someone who was not democratically elected. While I think the actual appointee is brilliant, it is hard to see how one voice can ‘represent’ the views of millions of people living with dementia worldwide without proper resource allocation.

Part of the reason that many people in the general public believe that ‘nothing can be done about dementia’ is the relentless framing of dementia in the media as ‘dementia sufferers’ or ‘X has lost his battle against dementia’, and news of the latest game-changing “breakthrough”. The raison d”être of ‘Dementia Friends‘ was to combat stigma and prejudice through educating the general public about give basic facts about the dementias, but there has never been any systematic peer-reviewed publication on these basic campaigning facts were chosen, or how effective the organisers of ‘Dementia Friends’ have been in seeing their pledges materialise ‘turning community to action’. I think it is laudable to reframe the discussion of public services, and I do sympathise with the view of David Willetts in ‘Civic Conservativism’ predating Cameron’s antidote to the Big State as the “Big Society” (see for example his noteworthy Hugo Young lecture). But I do draw short shrift at ‘death by information session’, dressed up haphazardly as “training”, in other words making the State impoverished and malnourished of resources.

Tweet source

Training tweet

In my view the workforce does need to be properly training in dementia from those who have been adequately trained (I admire Andy Tysoe as he is properly trained.) For every pound spent on developing a cure for dementia that’s one pound deprived from frontline care. I am very much enthused about the need for visionary basic research in dementia. I myself made a groundbreaking discovery in the diagnosis of the behavioural frontal variant of frontotemporal dementia, which is currently in the Oxford Textbook of Medicine. But we have an English dementia strategy which has benefited from corporate capture, regulatory capture and Big Charity capture. For every pound spent on the NHS on a medication for dementia which does not slow progression and only has a limited time window for the treatment of symptoms (according to NICE), that’s one pound being deprived for a ‘social prescription‘ which could actually improve the quality of life of someone living with dementia (such as an iPod). Social prescribing offers a prompt means of providing an alternative to medication, which is a way to avoid physical disease and mental illness even.

Here we do need above high quality research into living well with dementia which offers comparatively, in my view, the best return on investment; see the brilliant research, for example, from the “Dementia” journal.

We do need to “face the facts”, and dishonest politicians should come clean (with or without the assistance of Big Charity with vested interests in promoting neuroscience); see:

“Scientific and financial challenges have meant 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, according to the study.

But please don’t get me wrong! I would be absolutely delighted if the medical profession were able to come up with a safe medication for Alzheimer’s disease which could cross the blood brain barrier (and a comparable treatment for the other 100 or so dementias).

There’s absolutely no doubt in my mind that communities can be “dementia supportive”, a term I prefer possibly to “dementia friendly”. The point here is that communities should be supportive as a matter of legal obligations, i.e. should not be unlawful in not providing reasonable adjustments under the Equality Act (as dementia is a disability), or living in a care home which do not meet basic human rights in dignity. Otherwise, it merely becomes a race to the bottom of shopkeepers wishing to establish their ‘dementia friendly’ credentials to make a fast buck. I am especially attracted to the idea that communities, if supportive of people living with dementia and caregivers, can mitigate against loneliness and isolation which can so easily follow the clinical diagnosis of dementia.

Ardent campaigner, Norman McNamara, living with diffuse lewy Body type dementia, himself warned against thinking ‘job done’ simply with a label, back in 2012:

“It was agreed with the PM (Can’t believe i am writing this) that we WILL NOT just put stickers up all around town/cities  announcing that we are Dementia friendly unless some sort of Dementia Aware training is in place first. Do you remember in the 80s when town called themselves “Nuclear free? AS IF!! It was a fiasco and we don’t want to go down that route!”! So please my friends remember, this is just the beginning , but what a beginning, and please remember this is in memory of all those lost already to this disease and those living with itt now, THE FIGHT GOES ON !!!”

Rights are indeed important in the NHS: it may, in certain circumstances, be more effective to exert ‘choice’ through the NHS Constitution in future for a right over where to die than through a personal budget.

And the actual diagnosis itself merits scrutiny. We should not be in a race to the bottom there, with high volume low quality diagnoses. For every wrong diagnosis, there is a victim of that diagnosis. Clinicians are regulated for this, but Big Charity is not. There has never been any systematic study into the harm done by an incorrect diagnosis, though presumably that would have been addressed in the impact assessment of the QOF ‘incentivising dementia diagnosis’ policy. I think primary care is overstretched, and I have a huge amount of personal admiration for GPs (my late father used to be a GP for about 30 years). But it would be unfair to overload them with making the diagnosis, even though the ‘diagnosis gap’ is well rehearsed elsewhere.

It is truly sad for me, as someone who has given a large part of my life to this, much of it in a voluntary capacity, that visions for dementia in England are more to do with individual egos and commercial aspirations of Big Charity than the actual needs of people living with dementia and caregivers. I do, however, look forward to hearing from people I respect, such as Agnes Houston or Kate Swaffer (who is about to go to Geneva to speak at the WHO/ADI conference on behalf of the Dementia Alliance International).

But otherwise… we really cannot go on like this.

Empowering the person living with dementia personally, with more than the diagnosis

The 2009 English dementia strategy, co-authored by Sube Banerjee, now Professor of dementia at Brighton and Sussex Medical School, and Jenny Owen, then head of social care in Essex, went a long way to providing a road map for a strategy.

This laid down useful foundations, many strands of which were to be embellished tactically under this Government through “The Prime Minister’s Dementia Challenge”. In some ways, its major limitations were unintended consequences not fully known at the time.

The English dementia strategy is intended to last for five years, and, as the 2009-14 ‘five years’ come to an end, now is THE right time to think about what should be in the next one. Irrespective of who comes to deliver this particular one, progress has been made with the current one. I believe that across a number of different strands the focus on policy should delivering care, cure or support, according to what is right for that particular person in his social environment  at that particular time.

The problems facing the English dementia strategy now are annoyingly similar to the ones which Banerjee and Owen faced in 2008. Whilst they do not have ‘political masters as such’, they can be said to have had some political success. But that should never have been the landmarks by which the All Party Parliamentary Committee, chaired by Baroness Sally Greengross, were to ‘judge’ this strategy document.

The national dementia strategy back in 2009 had three perfectly laudable aims.

The first is to change professional and societal views about dementia.

There was a perception that some Doctors would sit on a possible diagnosis for years, before nailing their colours to their diagnostic mast. So this need for professionals to be confident about their diagnosis got misinterpreted by non-clinical managers as certain doctors, particularly in primary care, being obstructive in making a diagnosis.

At the time, it was perceived that there also had to be an overhaul in the way doctors think about the disease – a quarter believe that dementia patients are a drain on resources with little positive outcome, according to a National Audit Office (NAO) in July 2007. But this has only been exacerbated, and some would say worsened, by language which maintains “the costs of dementia” and “burden”, rather than the value which people with dementia can bring to society.

Associated with this has undoubtedly been the promotion of the message that ‘nothing can be done about dementia’. Indeed, the G8 dementia summit, collectively representing the views of multi-national pharmaceutical companies and their capture within finance, government and research, spoke little of care, and focused on methods such as data sharing across jurisdictions. It’s likely corporate investors will see returns on their investment in personalised medicine and Big Data, but it is essential for the morale of persons with dementia that they are not simply presented as ‘subjects’ in drug trials (and misuse of goodwill in the general public too). Unfortunately, if elements of Pharma overplay their hand, they can ultimately become losers, an issue very well known to them.

High quality research is not simply about excellent research into novel applications of drugs for depression, diabetes or hypertension, or the plethora of molecular tools which have a long history of side effects and lack of selectivity, but should also be about high quality research into living well with dementia. This is going to be all the more essential as the NHS makes a painful transition from a national illness service back to a national health service, where wellbeing as well as prevention of illness and emergency are nobel public health aims.

This summit was presented with an ultimate aim of producing a ‘cure’ for dementia by 2025, or ‘disease modifying therapies’, with no discussion of how ethical it would be – or not be – for the medical profession to put into slow motion a progressive condition; if it happened that the condition were still  inevitable. The overwhelming impression of many is that the summit itself was distinctly underwhelming in what it offered in terms of grassroots help ‘on the gound’.

The G8 dementia summit did nothing to consider the efficacy of innovations for living well with dementia, for example assistive technology, ambient assisted living, design of the home, design of the ward, design of the built environment or dementia friendly communities. It did nonetheless commit to wanting to know about it at some later date.

It did nothing to consider the intricacies of the fundamentals of ‘capacity’ albeit in a cross-jurisdictional way, and how this might impact on advocacy services. All these issues, especially the last one, are essential for improving the quality of life of people currently living with dementia.

A focus on the future, for example genetic analysis informing upon potential lifestyle changes one might have to prevent getting dementia at all, can be dispiriting for those currently living with dementia, who must not be led to feel ignored amongst a sea of savage cuts in social care. The realistic question for the next government, after May 7th 2015, of whatever flavour, is to how to catalyse change towards an integrated or ‘whole person’ ethos; ‘social prescribing‘, for example, might be a way for genuine innovations to improve wellbeing for people with dementia, such as ‘sporting memories‘, to gain necessary traction.

Empowering the person living with dementia with more than the diagnosis is fundamental. It is now appreciated that living well with dementia requires time to take care over appreciating the beliefs, concerns and expectations of the person in relation to his or her own environment. This interplay between personhood and environment for living well with dementia has its firm foundations in the work of the late great Tom Kitwood, and has been assumed by the most unlikely of bedfellows in the form of ‘person centred care’ even by multinationals.

Rather late in the day, and this seemed to be a mutual collusion between corporate-acting charities and the media, as well as Pharma, was a volte face on misleading communications about the efficacy of medications used to treat dementia. NICE, although potentially themselves a target of ‘regulatory capture’, were unequivocal about their conclusions; that a class of drugs used to treat ideally early attentional and mnemonic problems in early dementia of the Alzheimer type, had a short-lived effect on symptoms. of a matter of a few months, and did nothing to slow progression of disease. Policy is obligated though to accommodate that army of people who have noticed substantial symptomatic benefits for that short period of time with such medications such as aricept (one of the medications known as cholinesterase inhibitors)? Notwithstanding that, I dare say a medication ‘to stop dementia in its tracks’, as has been achieved for some cancers and HIV/AIDS, would be ‘motivating’, though I think the parallels medically between the dementias, HIV/AIDS and cancer have been overegged by non-clinicians.

And this was after spending many years researching these medications. The opportunity cost of the NHS pursuing the medical model is not inconsiderable if one is indeed wishing to ‘count the cost’ of dementia, compared to what could have been achieved through simple promotion of living well methods.

Large charities across a number of jurisdictions have clearly been culprits, and are likely to be hoisted by their ptard, as organisations as the Dementia Alliance International, a group of leading people living with dementia, successfully reset  the agenda in favour of their interests at the Puerto Rico Alzheimer’s Disease International Conference this year.

The second problem that still needs addressing is diagnosing the conditions which commonly come under “the dementia umbrella”.

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[Source: here]

And clearly, the millions spent on Dementia Friends, a Department of Health initiative delivered by the Alzheimer’s Society, provides a basic core of information about dementia. It has a target of one million ‘dementia friends’, which looks unachievable by 2015 now. This figure was based on Japan, where the social care set-up is indeed much more impressive anyway, and which has a much lager population.


The messages of this campaign are pretty rudimentary, one quite ambiguous. The campaign suffers from training up potentially a lot of people with exactly the same information, delivered by people with no academic or practitioner qualifications in dementia necessarily. This means that such ‘dementia friend champions’ are not best placed to discuss at all the difference between the various medical presentations of dementia in real life, nor any of the possible management steps. Egon Ronay it is not, it is the Big Mac of dementia for the masses. But some would say it is better than nothing.

But has training up so many dementia friends actually done a jot about making the general public into activists for dementia, like being a bit more patient with someone with dementia in a supermarket queue? Dementia Friends clearly cannot address how a member of the general public might ‘recognise’ a person with dementia in the community, let alone be friendly to them, just by mere superficial observation of their behaviour. It is actually impossible to do so – laying to the bed the completely misleading notion that schoolchildren have been able to recognise the hallmarks of dementia in their elders, which have been missed by their local GPs.

This first issue about shifting attitudes in perception and identity of dementia is very much linked to the issue of diagnostic rates. A public accounts committee report in January 2008 had revealed that two-thirds of people with dementia never receive a specialist diagnosis. Only 31% of GPs surveyed by the NAO agreed that they had received sufficient training to help them diagnose and manage dementia, and doctors have less confidence about diagnosing the disease in 2007 than they had in 2004.

Have things fundamentally changed in this time? One suspects fundamentally not, as there has always been a reluctance to do anything more than a broad brush public health approach to the issue of diagnosis.

Goodhart’s law is named after the banker who originated it, Charles Goodhart. Its most popular formulation is: “When a measure becomes a target, it ceases to be a good measure.” The original formulation by Goodhart, a former advisor to the Bank of England and Emeritus Professor at the London School of Economics, is this: “As soon as the government attempts to regulate any particular set of financial assets, these become unreliable as indicators of economic trends.”

And now it turns out that recoding strategies are being developed in primary care so as possibly to inflate the diagnostic rates artifactually. But while the situation arises that people in the general public may delay seeing their GP, and thereafter by mutual agreement the GP and NHS patient decide not to go on further ‘tests’, primary care can quite easily sit on many people receiving a diagnosis. The evidence base for mechanisms such as ‘the dementia prevalence calculator’ has been embarrassingly thin.

For example, Gill Phillips gives a fairly typical description of someone ‘worried well’ over functional problems at a petrol pump very recently, but the acid test for English policy is whether a person such as Phillips would feel inclined at all to see a Doctor over her ‘complaints’? The danger with equating memory problems with dementia, for example, means that normal ageing, while associated with dementia, can all too easily become medicalised.

And while there are possibly substantial disadvantages in receiving a diagnosis, both personally (e.g. with friends), professionally (e.g. employment), or both (e.g. driving licence), one should consider the limitations of national policy in turning around deep-seated prejudice, stigma and discrimination. And the solution to loneliness, undoubtedly a profound problem, is not necessarily becoming a ‘Dementia Friend’ if this means in reality getting the badge but never befriending a person with dementia? A ‘point of action’ like donating to a large corporate charity may be low hanging fruit for members of the public and large charities, but I feel English policy should be ambitious enough to consider shifting deep-rooted problems.

Such problems would undoubtedly be mitigated against if  any Government simply came clean about what has been the increase in resource allocation, if any, for specialist diagnostic and post-diagnostic support services following this drive for improved dementia diagnosis rates. Lack of counselling around the period of diagnosis, with some people being reported as just being recipients of an ‘information pack’, is clearly not on, as a diagnosis of dementia, especially (some would say) if incorrect, is a ‘life changing event’.

Too often people with dementia, and close friends or family, describe only coming into contact with medical and care services at the beginning and end of their experience of a dementia timeline. Different symptoms, and different medications to avoid, are to be expected depending on which of the hundred causes of dementia a person has; for example Terry Pratchett and Norman McNamara have two very different types of dementia, posterior cortical atrophy and diffuse Lewy Body disease respectively. There is going to be no ‘quick fix’ for the lack of specialist support, though there is undoubtedly a rôle for ‘drop in‘ centres to provide a non-threatening environment for the discussion of dementia, encouraging community networks.

Ultimately, the diagnosis of dementia should be right for the person, at the correct time for him or her. This is the philosophy behind ‘timely’ rather than ‘early’ diagnosis, a battle which certain policy-makers appear to have won at last. Empowering the person living with dementia with that diagnosis can only be done on that personal level, with proper time and patience; ensuring sustainable dignity and respect for that person with a possible life-changing diagnosis of dementia.

The third priority of the strategy inevitably will be to improve the quality of care and support for people once they have been diagnosed.

At one end, it would be enormously helpful if the clinical regulators could hone on their minimum standard of care and those people responsible for care, including management. This is likely to be done in a number of ways, for example through wilful neglect, or the proposed anticipated proposals from the English Law Commission on the regulation of healthcare professionals anticipated to be implemented – if at all – in the next Government.

At the other end, there has been a powerful realisation that the entire system would collapse if you simply factored out the millions of unpaid family caregivers. They often, despite working extremely hard, report being nervous about whether their care is as good as it should be, and often do not consider themselves ‘carers’ at all.

There have clearly been issues which have been kicked into the long grass, such as tentative plans for a National Care Service while such vigorous energy was put into the Prime Minister’s Dementia Challenge. “Dementia friendly communities”, while an effective marketing mantra, clearly needs considerably more clarification in detail by policy makers, or else it is at real danger of being tokenistic patronisingly further stereotypes. Nobody for example would dare to suggest a policy framework called “Black friendly communities”. Whilst there are thousands of specialist Macmillan nurses for cancer, there’s about a hundred specialist Admiral nurses for dementia.

We clearly need more specialist nurses, even there is some sort of debate lurking as to whether Admiral nurses are ‘the best business model’. However, the naysayers need to tackle head on how very many people, such as those attending the Alzheimer’s Show this weekend in Olympia, describe a system ‘on its knees’, with no real proper coordination or guidance for people with dementia, their closest friends and families, to navigate around the maze of the housing, education, financial/benefits, legal, NHS and social care systems.

A rôle for ‘care coordinators‘ – sometime soon – will have to be revisited one suspects. But it is clearly impossible to have this debate without a commitment from government to put resources into a adequate and safe care, but while concerns about ‘efficiency savings’ and staffing exist, as well as existing employment practices such as zero-hour contracts and paid carers being paid below the minimum wage, how society values carers will continue to be an issue.

At the end of the day, care is profoundly personal, and repeatedly good care is reported by people who have witnessed continuity of care (away from the philosophy of the delivery of care in 15-minute “bite size chunks”). Unfortunately, the narrative in the NHS latterly has become one of business continuity, rather than clinical professional continuity, but this should ideally be factored into the new renewed strategy as well. I feel that this renewed strategy will have to accommodate actual findings from the literature taken as a whole, which is progressing at a formidable rate.

In a paper from February 2014, the authors review the the safety of  the use of antipsychotics in elderly patients affected with dementia, restricting their analysis mainly to the last ten years. They concluded, “Use of antipsychotics in dementia needs a careful case-by-case assessment, together with the possible drug-drug, drug-disease, and drug-food interactions.” But interestingly they also say, “Treatment of behavioral disorders in dementia should initially consider no pharmacological means. Should this (sic) kind of approach be unsuccessful, medical doctors have to start drug treatment. Notwithstanding controversial data, antipsychotics are probably the best option for short-term treatment (6-12 weeks) of severe, persistent, and resistant aggression.” There are very clearly regulatory concerns of the safety of some antipsychotics, and yet the consensus appears to be they – whilst carrying substantial risk in some of very severe adverse effects – may also be of some benefit in some. It will be essential for the new National Dementia Strategy keeps up the only rapidly changing literature in this area, as do the clinical regulators.



Finally, in summary, I believe that there is enormous potential for England, and its workforce, to lead the way in dementia, in a way of interest to the rest of the world. I do think it needs to take account of the successes and problems with the five year strategy just coming to an end, with a three-pronged attack particularly on perception and identity, diagnosis and care. But, unsurprisingly, I believe that there are still a few gear-changes to be made culturally in the NHS, however it becomes delivered in the near future. There needs to be a clear idea of the needs of all stakeholders, of which the needs of persons with dementia, and those closest to them, must come top. There needs to be clear mechanisms for disseminating good practice, and leading on evidence-based developments in dementia wherever they come from in the world. And dementia policy should not be  divorced from substantial developments from other areas of NHS England’s strategic mission: particularly in long-term conditions, and end-of-life care. This, again, would be the NHS delivering the right level of help for all those touched by dementia, from the point of diagnosis and well beyond.

Despite the sheer enormity of the task, I am actually quietly confident.



The ‘cure vs care’ debate: “Priorities for the future”, a conclusion by Prof Peter Whitehouse

Review: “The end of Alzheimer’s disease—From biochemical pharmacology to ecopsychosociology: A personal perspective.” in the journal “Biochemical pharmacology” to be published 2014.

His biography is as follows:

Prof. Peter J. Whitehouse, MD, PhD is Professor of Neurology as well as current or former Professor of Cognitive Science, Psychiatry, Neuroscience, Psychology, Nursing, Organizational Behavior, Bioethics and History. His is also a member of the faculty of the Fowler Center for Sustainable Value at the Weatherhead School of Management. He received his undergraduate degree from Brown University and MD-PhD (Psychology) from The Johns Hopkins University (with field work at Harvard and Boston Universities, followed by a Fellowship in Neuroscience and Psychiatry and a faculty appointment at Hopkins.

In 1986 he moved to Case Western Reserve University to develop the University Alzheimer Center, now a part of the University Neurological Institute at University Hospitals Case Medical Center. This center became one of the ten best funded in the world. He continued his own life-long learning with a Masters Degree in Bioethics and Fellowship in Organizational Behavior at Case

He is clinically active at University Hospitals of Cleveland in the Joseph Foley Elder Health Center caring for individuals with concerns about their cognitive abilities as they age. He is working to develop an integrative health practice focused on the healing power of storytelling. He envisioned and cofounded the Greenwall Foundation supported StoryBank, a regional resource for transdisciplinary analysis and utilization of narratives of illness and health that foster community well-being.

He is the author (with Danny George) of a provocative book entitled The Myth of Alzheimer’s: what you aren’t being told about today’s most dreaded diagnosis.

This is the conclusion entitled, “Priorities for the future”:

We must essentially reverse priorities for the treatment of AD. Care must be viewed as more important than cure rather than the current message from the Alzheimer’s Association and others that cure (ending ” Alzheimer’s”) is the answer. Even if effective drugs are developed, they might improve mortality (i.e. by keeping people out of nursing homes longer) and hence might not in the long term diminish the number of older people with cognitive impairment. If such drugs prolong life, they might actually increase health care costs and might even cause individuals to live longer with dementia rather than the hoped for goal of improving cognition but not affecting the age at which people die. Current drugs do not, and potential future drugs might not, improve quality of life. Evidence suggests psychosocial interventions, like educational and arts programs, do in fact have such a benefit [4,12]. Supportive and enriching information technology [8] may be more important than biotechnology. Providing home-like community based programs should be more of a priority. In fact in the future society should work to improve the quality of eldercare communities in general. A dementia-friendly community is likely to be more comfortable for elders in general, children and in fact all the residents. AD is a cultural lever for social change that is actually more important than even the enormous personal and social challenges age-related cognitive impairments themselves pose. Within the seeds of reconsidering the concept of AD lies the potential for deep reflection about the role of the brain in our lives, the processes of aging, the importance of science and also understanding its limitations, and the very nature of our individual human lives in community. Rethinking and revaluing so called AD can lead to social and economic benefits far beyond this unfortunate clinical label. Therein lies true hope in my view.