dementia policy

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

Shibley Rahman 0 Comments

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.]

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

Shibley Rahman 0 Comments

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.

Living well with corporate capture. What is the future of the Prime Minister’s Dementia Challenge?

Shibley Rahman 0 Comments

“Citizens have become consumers with status proportional to purchasing power, and former public spaces have been enclosed and transformed into private malls for shopping as recreation or “therapy.” Step by step, private companies, dedicated to enriching their owners, take over the core functions of the state. This process, which has profound implications for health policy, is promoted by politicians proclaiming an “ideology” of shrinking the state to the absolute minimum. These politicians envisage replacing almost all public service provision through outsourcing and other forms of privatisation such as “right to provide” management buyouts. This ambition extends far beyond health and social care, reaching even to policing and the armed forces.”

And so write Jennifer Mindell, Lucy Reynolds and Martin McKee recently about ‘corporate capture’ in the British Medical Journal.

Alistair Burns, England’s clinical lead on dementia, recently concluded a presentation on the clinical network for London with the following slide:

Reminyl Speaker Training Showfile

Alistair clearly does not mean ‘Dementia is everyone’s business’ in the “corporate capture” sense. Instead, he is presumably drawing attention to initiatives such as Brighton and Sussex Medical School’s initiative to promote dementia awareness at all levels of an organisation (and society).

 

Microsoft PowerPoint - H1 Dementia Care Event

 

The comparison with diabetes is for me interesting in that I think of living well with diabetes, post diagnosis, as conceptually similar to living well with dementia, in the sense that living well with a long term condition is a way of life. And with good control, it’s possible for some people to avoid hospital, becoming patients, when care in the community would be preferred for a number of clinical reasons. Where I feel the comparison falls flat is that I do not think that it is possible to measure outcomes for living well with dementia easily. Sure, I have writen on metrics used to measure living well with dementia, drawing on the work of Sube Banerjee, Alistair’s predecessor. It might be possible to correlate good control with a blood test value such as the HBA1c, and it steers the reward mechanism of the NHS for rewarding clinicians for failure of management (e.g. laser treatment in the eye, foot amputation, renal dialysis), but the comparison needs some clinical expertise to be pulled off properly. The issue of breaking down ‘barriers’ between primary and secondary care is an urgent issue, and ‘whole person care’ or ‘integrated care’ may or may not help to facilitate that. But a future government must not get too enmeshed in sloganising if it means forgetting basic requirements of foot soldiers on the ground, such as specialist dementia nurses including Dementia UK’s ‘Admiral nurses’.

But the question of who gives the correct diagnosis of dementia, or even verifies it, won’t go away.

Having done Dementia Friends myself, a Public Health England the Alzheimer’s Society joint initiative, I feel the initiative is extremely well executed from an operational level. I think it’s pushing it for a member of the public to think that an old and doddering lady crossing the lady might have dementia and requires help, as medicalising ageing into dementia is a dangerous route to take. The £2.4 million programme is funded by the Social Fund and the Department of Health. Public Health England are planning to undertake an evaluation of the Dementia Friends Campaign launched on 7 May 2014, which will include tracking data and prevention message testing.

There are a number of important clinical points here. There are crucial questions as to whether persons themselves with a possible diagnosis, friends and/or families themselves want a diagnosis of dementia. A diagnosis of dementia in anyone’s book is a life-changing event. The concerns of the medical profession have been effectively rehearsed.  Notwithstanding, the ambition that, by 2015, two thirds of the estimated number of people with dementia should have a diagnosis, with appropriate post diagnostic support has been agreed with NHS England.  To support GPs and other primary care staff, a Dementia Roadmap web-based tool has been commissioned by the Department of Health from the Royal College of General Practitioners. The roadmap has now been officially launched, and will provide a framework that local areas can use to provide local information about dementia from health, social care and the third sector to assist primary care staff to more effectively support patients, families and carers from the time of diagnosis and beyond. Feedback from relevant stakeholders will be most interesting.

People with dementia need to be followed up across a period of time for a diagnosis of dementia to be reliably made, and ‘in the right hands’, i.e. of a specialist dementia service. Whilst NHS England are working with those areas with the longest waits, with the aim of ensuring that anyone with suspected dementia will not have an excessive wait for a timely assessment, there has to be monitoring of who does that timely assessment and whether it produces an accurate result. At an extreme example, clinical diagnoses of rarer dementias, particularly younger onset, can only be done effectively by senior physicians with reference to two clinical histories, two clinical examinations, neuroimaging (e.g. CT, MRI, or even fMRI or SPECT), lumbar puncture/cerebrospinal fluid (if not contraindicated), cognitive psychology, EEG, or even – extremely rarely – a brain biopsy. But this would be to propose an Aunt Sally argument – many possible cases of dementia can be tackled by primary care with appropriate testing perhaps in the future, and certainly adequate resources will need to be put into primary care for training of the workforce. Or else, it is literally a ‘something for nothing’ approach.  Some people have ‘mild cognitive impairment’ instead, and will never progress to dementia.There are 149,186 dementia friends currently. This number is rapidly increasing. The goal is one million.Furthermore, there are many people given a diagnosis of dementia while alive who never have it post mortem. And the diagnosis can only be definitively made post mortem. Seth Love’s brilliant research (and he is an ‘Ambassador’ to the Alzheimer’s BRACE charity) is a testament to this. Anyway, NHS England and the Department of Health are working with the Royal College of Psychiatrists to encourage more Memory Services to become accredited.

And when is screening not officially screening? This continues to require definition in England’s policy. The original Wilson and Jungner (1968) principles have appear to have become muffled in translation. The CQUIN has led to over 4,000 referrals a month, but this will only contribute to improving diagnosis rates for dementia if this is not producing a tidal wave of false positives. For quarter 3 2013/14, 83% of admitted patients were initially assessed for potential dementia. Of those assessed and found as potentially having dementia, 89% were further assessed. And of those diagnosed as potentially having dementia, 86% were referred on to specialist services. But we do need the final figure. This policy plank for me will also go back to the issue of whether policy is putting sufficient resources into the diagnostic process and beyond. Stories of people being landed with a diagnosis out of nowhere and given not much further information than an information pack are all too common. A well designed system would have counselling before the diagnosis, during the diagnosis, and after the diagnosis.

Ideally, an appointed advisor would then see to continuity of care, allowing persons with dementia to be able to feel confident about telling their diagnosis to friends and/or family. The advisor would ideally then give impartial advice on social determinants of health, such as housing or education. Policy may be slowly moving in this direction. In April 2014 NHS England published a new Dementia Directed Enhanced Service (DES) for take up by GPs to reward practices for facilitating timely diagnosis and support for people with dementia. Patients who have a diagnosis of dementia will be offered an extended appointment to develop a care plan. The care planning discussion will focus on their physical and mental health and social needs, which will include referral and signposting to local support services. From 10 signatories in March 2012, to date, there are now 173 organisations representing nearly 3,000 care services committed to delivering high quality, personalised care to people with dementia and their carers.

But all this requires money and skill. There is no quick fix.

The areas of action for the Prime Minister’s Dementia Challenge are: dementia friendly communities, health and care and improving research.

In November 2012, The Secretary of State for Health announced a £50 million dementia-friendly environments capital investment fund to support the NHS and social care to create dementia-friendly environments. The term ‘dementia friendly communities’ is intrinsically difficult, for reasons I have previously tried to introduce. A concern must be the ideology behind the introduction of this policy in this jurisdiction. The emphasis has been very much on making businesses ‘business friendly’, which is of a plausible raison d’être in itself.  This, arguably, is reflected in the list of chief stakeholders of the dementia friendly communities champion group.

Dementia friendly communities board

It happens to fit very nicely with the Big Society and the ‘Nudge’ narrative of the current government. But it sits uneasy with the idea that it is in fact a manifestation of a small state which bears little responsibility apart from overseeing at an arm’s length a free market. The critical test is whether this policy plank might have improved NHS care. 42 NHS and 74 Social Care National pilot schemes were approved in June 2013 as national pilots. Most of the projects have now been completed, and they will be evaluated by a team of researchers at Loughborough University over the coming months. The evaluation will provide knowledge and evidence about those aspects of the physical care environment which can be used to provide improved care provision for people with dementia, their families and carers. But the policy has had some very exciting successes: for example the ‘Sporting Memories Network’, an approach based on the neural re-activation of sporting autobiographical memories, recently scooped top prize for national initiative in the Alzheimer’s Society Dementia Friendly Communities Awards 2014.

And meanwhile, the care system in England is on its knees. Stories of drastic underfunding of the care system are extremely common now. An army of millions of unpaid family carers are left propping up a system which barely works. There appears to be little interest in guiding these people, with psychological, financial and/or legal burdens of their own, to reassure them that all their hard work is delivering an extraordinary level of person-centred care.

But this for me was an inevitable consequence of ‘corporate capture’. The G8 World Dementia Council does not have any representatives of people with dementia or carers.

That is why ‘Living well with dementia’ is an important research strand, and hopefully one which Prof Martin Rossor and colleagues  at NIHR for dementia research will give due attention to in due course. But all too readily research into innovations, ambient assisted living, design of the ward, dementia friendly communities, assistive technology, and advocacy play second fiddle to the endless song of Big Pharma, touting how a ‘cure’ for dementia is just around the corner. Yet again.

So what’s the solution?

The answer lies, I feel, in particularly what happens in the next year and beyond.

The Prime Minister’s challenge on dementia was developed as a successor to the National Dementia Strategy, with the challenge of delivering major improvements in dementia care, support and research. It runs until March 2015. Preparatory work to produce a successor to the Challenge from the Department of Health (of England) is now underway in order that all the stakeholders can fully understand progress so far and identify those areas where more needs to be done. The Department of Health have therefore commissioned an independent assessment of progress on dementia since 2009.

There are a number of other important pieces of work that are underway, which will provide information and evidence about progress and gaps. For example, according to the Department of Health, the All Party Parliamentary Group on Dementia chaired by The Baroness Sally Greengross OBE are producing a report focused on the National Dementia Strategy, and the Alzheimer’s Society has commissioned Deloitte to assess progress and in the autumn will be publishing new prevalence data. Indeed the corporate entity known as Deloitte Access Australia (a different set of management consultants in the private sector) produced in September 2011 a report on prevalence of dementia estimates in Australia. Deloitte themselves have an impressive, varied output regarding dementia. But of course they are not interested in dementia solely. “Deloitte” is the brand under which tens of thousands of dedicated professionals in independent firms throughout the world collaborate to provide audit, consulting, financial advisory, risk management, tax, and related services to select clients.

But also it appears that the Alzheimer’s Society, working with NHS England, has commissioned the London School of Economics to undertake a review into the accuracy of dementia prevalence data. The updated data is expected to be published in Autumn 2014. Apparently, once all this work has been concluded a decision will be made on the focus and aims of the successor to the PM’s challenge.

The current Coalition government has been much criticised in parts of the non-mainstream media for the representation of corporate private interests in the Health and Social Care Act (2012).

I believe people who are interested in dementia, including persons with dementia, caseworkers and academics, should make their opinions known to the APPG in a structured articulate way in time. I think not much will be achieved through the pages of the medical newspapers. And only time will tell whether the new dementia strategy will emerge in time before the next general election in England, to be held on May 7th 2015. However, even the most ardent critics will ultimately. The present Government should be congratulated for having made such a massive effort in educating the country about dementia, which is a necessary first step towards overcoming stigma and discrimination. The Alzheimer’s Society has impressively delivered its part of it, it appears, but future policy will benefit from much more ‘aggressive inclusion’ of other larger stakeholders (e.g. the Joseph Rowntree Foundation, Dementia UK) and smaller stakeholders.

And special thanks to Alistair Burns, England’s clinical lead for dementia, a Chair at Manchester, and much more.

It could be a case of: all change please. But a huge amount has been done.