Tag Archives: Health

The breaking point of dementia care. Time for fewer bandwagons and more real action.

How many times do we all need to say that the NHS and social care are at ‘breaking point’?

The King’s Fund confirmed today the broad sentiment of this year’s Care Quality Commission State of Care (CQC) report. There have been a few more social media bandwagons compared to last year, with a few more social movements aka marketing audiences. But the fundamentals are essentially unchanged, as we knew they would be.

Nigel Farage is not the only one with a ‘breaking point’. As it happens, his breaking point, now turned into Brexit, not only has an effect on the availability of Marmite, Surf and Ben and Jerry’s online from Tesco, but also has a bearing on whether the number of available workers in social care will implode on itself.

The sobering part of this morning’s CQC report was that all of this was going wrong ahead of the Brexit decision. There was nothing to stop years or decades of relative underinvestment in the NHS and social care apart from politics. The reason the NHS is suddenly ‘underfunded, underdoctored and overstretched‘ is not due to decades of Asian immigrant staff helping to prop up the system.

Prof Sube Banerjee makes a striking observation about what we might expect in the near future from certain innovations in dementia in his foreword to my book ‘Enhancing health and care in dementia: a person-centred integrated care approach’.

“In the provision of services for people with dementia we are at the stage of ‘a hundred flowers’ blooming with as many models of care as there are Clinical Commissioning Groups. While some of the flowers may be wonderful, some are likely to be frankly poisonous and we do not know which is which at the moment.”

It is comforting to put your faith in the future of dementia care from mythical figures on the side of a bus, or the myriad of hashtags on Twitter, but, unless Chris Hopson’s fundamental concern is addressed, we cannot move much further forward.

Chris Hopson is the fairly bubbly CEO of @NHSProviders who is not afraid to speak his mind politely.

Hopson was this week appearing in front of the Health Select Committee, sat to the right of the Rt Hon Stephen Dorrell MP one of the most accomplished and experienced Health Secretaries.

This is what Ed Miliband MP used to warn about as ‘overpromising and underdelivering’. Hopson mooted whether some of the sustainability and transformation plans would live up to quality expectations given their financial projections.

And Hopson mooted exactly what many of us feel.

At worst, there is a strange form of intense denial at the top echelons of Government. However, some decision will have to be taken at the time of the Autumn Statement by the current Chancellor of the Exchequer.

Sir David Nicholson famously remarked that making long term plans for the NHS tended to be scuppered by short-termism, echoed by Hopson more graphically earlier this week.

I don’t need to rehearse the ways in which the NHS and social care outcomes are consistently breached by pressure points in the NHS, including delayed transfers of care, crisis in mental health provision, funding inadequacy, A&E delays, and so on. These are well known.

But while the intense denial continues, this means a lack of adequate funding grand plans for an integrated care pathway for people with dementia and carers. Every where you look, despite some excellent care, there are massive problems, like the inequity in provision of adequate health services in care home, delays in organising care packages for older patients in hospital, chaotic care planning, inadequate sharing of health and care records.

The point is – these are not new problems. We don’t need to spend a year producing more infograms and hashtags, and more campaigns and more conferences, for the same ‘in crowd’ to do nothing about the burning problems.

For all the talk of collective or distributed leadership, and there is a lot of it, it is clear leadership is not up to scratch either in the NHS or social care. Paul Burstow MP famously likens social care to ‘Baywatch’, where a lot more effort could be put into teaching people how to swim, rather than having a coastguard hub with an unsafe number and mix of lifeguards.

For the care of dementia, there could be, for example, some financial assistance in allowing people to live at home with the correct assistive technology support, or even robots or pets, or even ‘hospital at home’. But because the system is so fracked we’re not anywhere near that level of debate.

It’s the repeated failure stupid.

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Enhancing health and wellbeing in dementia: care homes and care at home

telehealth

I am very honoured that the main foreword will be by Prof Sube Banerjee, Chair of Dementia at Brighton and Sussex Medical School.

Sube is very influential in English dementia policy. His contributions have been outstanding. Indeed, he co-authored the original English dementia strategy ‘Living well with dementia’ in 2009 on behalf of the Department of Health.

I am very honoured that the other two forewords are to be by Lisa Rodrigues and Lucy Frost, who have substantial interest and knowledge in dementia.

The book will be a timely look at the evidence, with many of the topics being rehearsed elsewhere in policy, such as the NHS Five Year Forward View, or the NICE guidance on dementia (currently in development).

This book is likely to be published by Jessica Kingsley Publishers in the end part of 2016.

 

Chapter 1 : Overview

I will draw on the existent literature to consider what has emerged about a consensus about ‘care pathways’ for dementia, in particular the events which can lead up to “crises” or transfer to a residential settings. There has not been an adequate look at the work up in primary care for dementia, and I will consider how domestic policy might be harmonised with international guidance. In the presence of an evidence base for dementia advisors and dementia support workers, I will consider the potential of signposting to services. I will re-visit the evidence base for prevention of dementia, and the current evidence base for the use of cholinesterase inhibitors and other drugs, but will concern myself with the impact of human rights, disability and sustainable communities in current thinking. The largest part of this chapter will be considering quality of care, and novel approaches such as integrated personal commissioning and the personal medical care home. Throughout the book, there will be a detailed discussion of the need to promote the health and wellbeing of carers, both paid and unpaid, and to consider coping strategies which might help through clinical specialist nurses and social care practitioners, and other colleagues.

Chapter 2 – The caring environment and culture

This chapter will explore evidence for the components of the built environment and sensory stimulation and enhancing person and relationship centred care which enhance health and wellbeing across care settings. The main emphasis will be on considering what change might be needed, and under what leadership from all stakeholders, to ‘improve’ services, howeverso defined, and the rôles that risk and innovation might play in the future. If there are truly ‘no more throwaway people’, this chapter will also include how the social capital from people with dementia and carers might be consolidated to build more resilient communities co-designing research and services.

Chapter 3 : Physical health and aspects of pharmacy

Enhancing physical health is essential across all different care settings. This chapter will review the current evidence for management of falls, frailty, pressure sores, urinary tract infections, and hip fractures, as well as aspects of nutrition and metabolic medicine, from a multidisciplinary perspective, emphasising the role for allied health professionals. Aspects of prescribing will also be considered, including overuse, underuse and inappropriate use of medications, and what evidence base has thus far built up in the area of ‘therapeutic lying’ and its ethical implications.

Chapter 4 : Wellbeing and mental health

This chapter will consider aspects of mental wellbeing, including self and identity, and awareness and insight. Its will also consider various other issues to do with mental health, including agitation, apathy, depression, and sleep.

Chapter 5 : Cognitive stimulation and life story

A substantial evidence base has built up concerning non-pharmacological approaches to dementia. This chapter will consider diverse approaches including cognitive stimulation, reminiscence work and cognitive neurorehabilitation. This chapter will also consider the evidence base for ‘life story’ and how it has been approached across various care settings.

Chapter 6 : Oral health and swallowing difficulties

This chapter will consider a much neglected area of health and wellbeing, relevant to holistic health and wellbeing, that of oral health and disease. Current important issues in this field will be considered, including dysphagia and mastication, as well as possible areas of interest for the future.

Chapter 7 : Activities

This chapter will evaluate critically what exactly is meant by the term ‘meaningful activity’, and consider whether reframing of the narrative, such as promoting creativity’ might be more helpful. The chapter will discuss the importance of communication across this area, but consider specifically the arts, drama and theatre, dancing, gardening and outdoor spaces, humour, and music.

Chapter 8 : Spirituality and sexuality

Identity and relationships have emerged as key themes across various conceptualisations of personhood, including of course Tom Kitwood’s. This backdrop will be presented at first, before considering key issues in sexuality, spirituality and religiosity, not only in life after a diagnosis, but also for enhancing health and wellbeing across all health and care settings.

Chapter 9 : Research, regulation and staff

Research and regulation are examples of ‘work in progress’. This chapter will consider the key directions of research in the dementias, both qualitative and quantitative, across various care settings. This chapter will also consider specific areas of interest, including barriers to drug development including regulation. The overall area of regulation will be considered in terms of proportionality, and celebrate areas of good practice. The chapter will also consider areas which also are of utmost importance such as abuse and neglect, and adult safeguarding in general. The chapter will also include a discussion of how the health and wellbeing of staff might be promoted better to meet the needs of people with dementia and carers.

Chapter 10 : Care homes in integrated care

There have been various fashions and fads in thinking about ‘integrated care’, and part of the problem has been the plethora of different perspectives and models. This chapter will adopt a practical perspective of people living with dementia and carers having their health and wellbeing attended to in the right place, right way and the right time, and consider various aspects concerning this. Consequently, the discussion will emphasise advance care planning, attending hospital, admission and re-admission, avoiding hospitals, care transitions, case management, the “future hospitals” initiative from the Royal Colleges of Physicians, improving patient flow, intermediate care and discharge, liaison psychiatry and CMHTs, specialist clinical nurses including Admiral nurses, and “virtual wards”.

Chapter 11 : Independence

This chapter will consider some important diverse areas which intend to promote independence, their progress and impact in overall policy. These include electronic medical and care records, “individual service funds”, and reablement. This chapter will also consider potential opportunities and risks from personal genomics and personalised medicine.

Chapter 12 : Palliative care and end of life care

It is beyond dispute that palliative care and end of life care are essential components of promoting health and wellbeing in people living with dementia and carers. Person-centred care, maximising continuity of care, is fundamental. This chapter will consider the special features of this approach which are very important, and also consider why there has been a reluctance amongst some to consider dementia as a terminal illness. The chapter will also consider the significance of grief, and also consider a possible notion of ‘pre-grief’.

Chapter 13 : Living at home

The first twelve chapters are very relevant to the final chapter on living at home. Whilst much of the media attention is on care homes and nursing homes, or residential settings in general, there is remarkably little focus on living at home, including living at home alone, despite enormous interest in this amongst the general population. This chapter will consider how this approach may have evolved from the philosophy of ‘successful aging in place’, and consider how specific home environments might be enhanced including extra care environments. This chapter will include discussion of, specifically, community nursing including Buurtzorg Nederland, day and respite care, self management. telehealth and technology, and smart homes. The pivotal role of social care and social work will be emphasised throughout.

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Concerns about the paired associates learning test for dementia

To begin to understand how a cathode-ray TV set works, I could remove one component called the “transistor”, and the picture disappears. It would be an incorrect conclusion to say that the purpose of that transistor is to produce the picture. However, I could argue correctly that the transistor was somehow part of the system required to produce the picture.

If I showed the transistor was particularly “hot” while the TV set was on, producing a picture, it might be reasonable for me to conclude the transistor was involved in producing the picture.

This is the sort of basic approach still used to work out what is going on in the brains and minds of people with Alzheimer’s disease, typical presentations of which might be memory problems. You can see whether removing parts of the brain in humans produces similar effects to the problems in thinking found in Alzheimer’s disease. Or alternatively, you could just try to look at the system of components in the brain which might be contributing to memory in brains working normally.

TV set

Whatever, it’s a puzzle. In this particular case, it’s a puzzle to solve correctly.

An innovation culture in the diagnosis of Alzheimer’s disease

David Cameron praised Cambridge Cognition’s work in developing new innovative tests for Alzheimer’s disease in the G8 summit held towards the end of last year.

There has been concern that some individuals with Alzheimer’s disease do not receive their diagnoses in a particularly fast way. A number of explanations for this have been offered, including medical personnel not being able to spot the symptoms of Alzheimer’s disease easily.

It is also helpful to understand what an “innovation” is. An innovation might be a product which enables you do something much more easily, and depends for its success popular uptake by the user. Strictly speaking, paper was an innovation too. However, the rise in cost of diagnosing Alzheimer’s disease, arguably, is an intriguing example of “Baumol’s cost disease“.

Individuals with Alzheimer’s disease have memory problems which are typically not thought to be qualitatively similar to those found in ageing elderly individuals. Often such people have real problems in navigating around environments. It is clearly a very laudable aim to have a bedside test which might be able to alert a physician to an underlying memory problem in Alzheimer’s disease.

The benefits and concerns, and my passing involvement

There are a number of important caveats here. Not all dementias are Alzheimer’s disease. There are in fact hundreds of dementias, some of which are reversible. Whatever test is used, the test should be sensitive enough to identify reliably a genuine thinking problem in Alzheimer’s disease, but should not be so ‘broad brush’ the test also misattributes memory problems, say found in the ‘mild cognitive impairment’ or even depression, to Alzheimer’s disease. Such mislabelling can perceivably cause distress, and cause people to be caught up in the medical system for further lengthy tests when they should not have been in the first place. On the other hand, it is of concern that the diagnosis might be missed in some people, and hence the drive from the Department of Health and the Alzheimer’s Society in “The Prime Minister’s Dementia Challenge”.

I wish Cambridge Cognition well, not least because I have worked with CANTAB whilst a graduate student at the University of Cambridge. In fact, some of my papers are cited in their bibliography. Their search facility is here.

Bibliography

The CANTABmobile “paired associates learning” test

To explain the “paired associates learning” test from first principles, and I’m not using actual screenshots, imagine me presenting you with a number of blank boxes dotted around the screen.

Fig 1

And I open each box in turn and reveal a shape to you. I can present the problem with a varying number of shapes.

Fig 3     Fig 2

After showing you all the shapes, I then present to you a shape and ask you to identify the box in which it was first presented.

Fig 4

Cambridge Cognition in welcoming the Draft National Plan to Address Alzheimer’s disease in my opinion set out entirely correctly the advantages of this computerised testing battery; including fast, not culturally biased, not heavily loading on language, norm-referenced, culturally unbiased, and easy-to-use.

The reasoning behind it being sensitive to early Alzheimer’s disease – but what about mild cognitive impairment?

To understand why the narrative for the test being so attractive in early Alzheimer’s disease, you have to understand that this test has been found to be sensitive to functions of particular brain areas. If you chop out bits of the brain near the front of the head (frontal cortex) or near the ear (temporal cortex), performance on this task is impaired, as Prof Adrian Owen showed when he was a post-doctoral fellow (paper here). With hindsight, perhaps Owen should have looked at the effects of other brain areas further back in the brain, such as the parietal cortex, which are also now thought to be important in memory for spatial cues.

A consistent finding has been loss of brain cells in the “entorhinal cortex”, in the temporal cortex, early in Alzheimer’s disease (see for example here). Therefore, that the paired associates learning test should identify memory problems in early Alzheimer’s disease immediately makes intuitive sense.

But the issues I feel are much more complicated, and I wish Cambridge Cognition well in clarifying them.

If it’s not Alzheimer’s disease, what else could be causing the memory problems?

One possibility is “mild cognitive impairment”. It is described, for example on the authoritative Mayo Clinic website, that:

“Mild cognitive impairment (MCI) is an intermediate stage between the expected cognitive decline of normal aging and the more serious decline of dementia. It can involve problems with memory, language, thinking and judgment that are greater than normal age-related changes. If you have mild cognitive impairment, you may be aware that your memory or mental function has “slipped.””

David Hart, Senior Business Development Manager of Cambridge Cognition, kindly sent Dr Peter Gordon the rationale for the use of the CANTAB task by Dr Andrew Blackwell, their Chief Scientific Officer (as produced on Peter’s blog here).

Cambridge Cognition concede that distinguishing between MCI and Alzheimer’s Disease “is difficult”, but this is a distinction that must be arrived at otherwise a test potentially will give “false positives” – but no test is perfection, and it basically is impossible to strive for perfection. What we all trying avoid is where a test for possible dementia itself is expensive followed by a further expensive investigation to show the original result was a false positive – or as the Express euphemistically called it recently, “Dementia diagnosis proved wrong by new super scanner”.  (It is important to state clearly here that no details are given how a diagnosis had been arrived at previously for Ros Davies.)

To give them credit, Cambridge Cognition cite the Chandler et al. (2008) paper, but the full citation of this is “Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association Volume 4, Issue 4, Supplement , Pages T551-T552, July 2008″ – i.e. it is a supplement of abstracts not full papers. This particular abstract can be viewed here.

It is hoped that this full study will have been published elsewhere, and if so Cambridge Cognition will need to update their website with the full paper. Notwithstanding this, the numbers of individuals in each group are disappointingly low: there are seventeen with putative MCI and twelve with putative Alzheimer’s disease.

Is this task actually sensitive and specific?

However, the discussion by Dr Andrew Blackwell and colleagues in his 2004 paper is useful. I have more than a passing interest in that paper as the main author on that paper was one of my PhD supervisors at Cambridge, Prof John Hodges. John has also kindly written one of my three Forewords for my book, “Living well with dementia” to be published on January 14th 2014.

Blackwell remarks correctly that this task has been used to distinguish between unipolar depression and Alzheimer’s disease in Rachel Swainson’s study. But is this enough? I looked to the previous Beats study in “geriatric depressive”, and there was nothing forthcoming there. How confident can one be that only early patients with Alzheimer’s disease, and not those severely depressed or with an underactive thyroid, will perform abnormally on the PAL? Personally, I’m not at all confident yet, despite the Swainson study, but these fears can easily be allayed with a sensitivity/specificity study of much higher power.

Blackwell is however correct in citing my study with Dr Andy Lee in that patients with semantic dementia and behavioural variant frontotemporal dementia are relatively unimpaired, though the clinical presentations of the frontotemporal dementias can be quite clearly different in the clinic from Alzheimer’s disease. Completing the double dissociation, I did find that the behavioural variant of frontotemporal dementia did present with rather specific risk-taking decision-making of its own.

But in the meantime the comparison with frontotemporal dementias is useful.

Lee

Nonetheless, this approach is being rolled out.

On 28 June 2013, the use of CANTABmobile was described as follows:

“The Guildford and Waverley Clinical Commissioning Group (CCG) is leading the use of an innovative new iPad-based memory assessment  system as part of a national push to decrease dementia diagnosis waiting times and streamline the referral process.   Accessed through NHS medical professionals, CANTABmobile enables GPs to test a patient’s episodic memory through an easy to use and administer 10-minute cognitive assessment.”

The CANTAB paired associates learning test is pictured under the heading “intuitive touchscreen interface”. if you go to “download information” on this page.

It was covered in the national media here: for example Victoria MacDonald’s report (this page provides a criticism of another report by Victoria MacDonald this time over Prof Brian Jarman’s proposed HSMR data by NHS Consultant, Dr Jacky Davis).

So what does this task test?

In understanding how the task works in reality, I found a paper where Prof Ed Bullmore and colleagues put individuals with Alzheimer’s disease and control subjects performing the task into a scanner really helpful.  Bullmore and colleagues frontloaded their discussion with the following comment:

“Independent of the level of difficulty, the majority of subjects in both groups activated a network of brain regions, including the anterior cingulate, lateral, and medial occipitoparietal and frontal cortices, during successful encoding and retrieval.”

This is interesting as it doesn’t point to the usual suspects of the narrative, i.e. the entorhinal cortex and other parts of temporal lobe. Even Andrew Blackwell had described how the damage to the entorhinal cortex might possibly account dor deficits on the paired associates task:

“The transentorhinal region is a complex transitional area located between the entorhinal region proper and the adjacent temporal isocortex. It has been suggested that damage to this site in early [Alzheimer’s disease] disrupts reciprocal connections with the hippocampal formation and that this disruption underlies deficits in episodic memory.”

But on reflection is this wholly a surprise? Ed Bullmore and colleagues from their results, also from Cambridge, discuss that the lateral parietal activations reported during episodic memory tasks are thought to reflect recognition processes and retrieval processing of spatial information. Medial parietal activity has been proposed to underlie imagery and retrieval success.

I don’t feel it’s altogether surprising given what is known about the build-up of pathology in Alzheimer’s disease, either. The authors of one study looking at this report that:

“[18F]FDDNP-PET signal was significantly higher across widespread cortical regions in subjects with poorer neuropsychological test performances. Strong correlations were seen in the entorhinal, orbitofrontal, and lateral temporal cortices, temporoparietal and perisylvian language areas, parietal association cortices, and much of the dorsolateral prefrontal cortex.”

But the Sahakian lab elsewhere did find something was up with the parts in “the hippocampus and associated structures”, i.e. the structures in the temporal lobe, in this task.

But that study was only comparing MCI with normal controls. It did not include patients with Alzheimer’s disease. This is relevant, if you happen to believe that MCI ‘predates’ Alzheimer’s disease, as the authors of that study clearly do:

“Later in the course of the transition from MCI to clinical Alzheimer’s disease, functioning of the MTL deteriorates further to an extent that such compensatory activity is no longer possible. The hyperactivity in early MCI might then represent a possible predictor or biomarker of the progression to Alzheimer’s disease.”

But in the real world this is far from clear.

However, the evidence of progression of MCI (mild cognitive impairment) to DAT is currently weak. It might be attractive to think that MCI is a preclinical form of dementia of Alzheimer Type, but unfortunately the evidence is not there to back this claim up at present: most people with MCI will not progress to dementia even after ten years of follow-up (Mitchell and Shiri-Feshki, 2009). Drug companies have been trying hard to push the identification of “biomarkers”, possibly subtle psychological ‘deficits’, scan results or changes in substances in the fluid surrounding the brain (or cerebrospinal fluid). It is no accident that psychological testing and biomarkers were heavily promoted in David Cameron’s G8 dementia speech in Lancaster House at the end of last year.

In summary, I don’t think it can be taken as red that entorhinal cortex problems are causing the observed deficits in the CANTABmobile paired associates learning task.

Conclusion

Overall, my personal view is that the deficits on the CANTAB paired associates learning task are real in early Alzheimer’s disease, but possibly not for the reasons felt by some in their groups. Above all, I don’t care as such, as long as greater numbers of people benefit from a correct diagnosis of Alzhemer’s disease, but I do feel that the logic in their reasoning has gone a bit awry.

My academic viewpoint is utterly irrelevant actually, as above all I wish the whole of the medical profession well in their “war against dementia”.

I’d be the first to admit I’ve got it wrong. I am simply raising the issues in a constructive way that I hope is beneficial for the public interest.

But Dr Mitul Mehta, Reader in Neuroimaging at the IoP, does have his concerns.

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Why I wrote 'Living well with dementia'

LWD2

Living well with dementia: the importance of the person and the environment for wellbeing” is my book to be published in the UK on January 14th 2014. I have written it on my own, but I have drawn on the published work a number of Professors working in the field of dementia have sent me. I hope the advantage of having an overview of their research programmes has been to put together with one voice where exactly this approach might be heading using the most contemporary published papers. I am enormously grateful that these busy Professors were able to supply me with their recent papers.

I was asked by my publishers to provide pointers about what a “marketing strategy” for this book might be. I can honestly say that, having given considerable time to thinking about this issue, I have no intention of pursuing a conventional promotion of my book. I don’t intend to do nothing, but I can confidently say that this book will be widely read. I have no intention of flogging it to commissioners, who will have their own understanding of what health or wellbeing is in the modern construct of NHS England’s policy.

I do, however, have every intention of addressing what I think is a major shortfall in the medical profession in their approach to dementia. Their emphasis has been, where done well, the exact diagnosis of dementia through an accurate history and examination of a patient, with appropriate investigations to boot (such as a CT scan, MRI, lumbar puncture, EEG or cognitive psychology). The combined efforts of Big Pharma and medics have produced limited medications for the symptomatic treatment of memory and attention in some dementias, but it would simply be a lie to say that they have a big effect in the majority of patients, or that they reverse the underlying the disease process consistently and robustly.

But that’s the medical model, and certainly the ambition for a ‘cure’ is a laudable one. I found the recent G8 dementia summit inspiring, but a bit of a distraction from providing properly funded solutions for people currently living with one of the hundreds of dementias. Many of us in the academic community have had healthy collaborations for some time; see for example one of the Forewords to my book by Prof Facundo Manes, Chair of Research of the World Federation of Neurology (Dementia and aphasia). To say it was a ‘front’ for Big Pharma would be unnecessarily aggressive, but it has been openly admitted in the media that a purpose of the summit was to assist ‘an ailing industry’.

I think to emphasise what might be done for future patients of dementia would be to fail to maximise the living of people with dementia NOW. By this, I mean a correct and timely diagnosis of an individual, the suggestion of appropriate assistive technologies and innovations, appropriate leisure activities, and the proper design of a positive environment (whether that be a ward, a house or external environment).

My book is strongly footed in current research, but I openly admit that research does not have all the answers. I should like there to be a strong emphasis also in non-pharmacological approaches, such as the benefits of life story and reminiscence, art or dancing. Lack of current research certainly does not make these approaches automatically invalid, particularly when you consider the real reports of people with dementia who have reported benefit.

The main reason is that I do not wish to organise attendance in a series of workshops or conferences about dementia is that I do not wish to be perceived as selling a book. I am more than happy to talk about the work if anyone should so desire. A number of my friends are very well-known newspaper journalists, and I deliberately have not approached any of them as I consider this might be taking advantage of my friendship. I haven’t approached dementia campaigners, or other dementia charities, as I don’t wish to get involved in some sort of competition for other people’s attention. I haven’t sought the ‘celebrity backing’ of some senior practitioners in dementia, although Prof John Hodges (a world expert particularly in the frontotemporal dementias) kindly wrote one of my Forewords. If people wish to discuss the issues in a collaborative manner to take English policy further, I’d be delighted.

At the centre of this book is what an individual with dementia CAN do rather what they cannot do. If you’re looking for a cogent report into the medical deficits of people with dementia, you’ll be sorely disappointed. I spent about 10 years of medical training at undergraduate and postgraduate levels, without having heard of personhood or Tom Kitwood’s work once. I think this a travesty. As a person who is physically disabled himself, the need to understand the whole person is of massive personal significance to me. I think that, beyond doubt, future training of anyone in the caring professions, including medicine, will have to start with understanding the whole person, rather than seeing a patient with a series of problems to be cured or symptomatically addressed.

No academic, practitioner, or charity can have a monopoly of ideas, which is why I hope my book will be sincerely treated with an open mind. People have different motivations for why they get involved in dementia; for example, a corporate wishing to be part of a ‘dementia friendly community’ through a charity might have a different guiding principle to an academic at a University wishing to research from scratch some of the fundamental principles of a dementia friendly community. Despite all the “big players”, nobody can match up to THAT individual who happens to be living with  dementia; that person is entitled to the utmost dignity and respect, as brilliantly expressed by Sally Marciano in her powerful Foreword.

I am hoping very much to meet up with some personal friends that I’ve met in the #dementiachallengers community on January 18th 2014, and this is as close as I’ll get to the book launch. But I hope you will find the book readable. I don’t feel that there’s any other book currently available which bridges these two totemic topics (dementia and wellbeing); but I hope there are other good reasons for reading it!

LWD1

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Living well with dementia: diet not drugs?

Mediterranean diet

There is no cure for dementia currently. The available treatment strategies offer mainly symptomatic benefits. Thus, strategies to prevent or delay onset of dementia by changes in lifestyle factors, such as diet, are therefore important, given finite resources. There is no doubt it’d be wonderful if, after many many years of trying, there might be a breakthrough.

But physicians and politicians have a responsibility to the general public to be honest about what is genuinely achievable. It’s in the interests of charities and research groups which depend on income for their research to raise money for a cure; or in the interests of those research groups wishing to raise money for research which appears linked to that somehow. It’s in the interest of Big Pharma-ceutical companies to raise money for their research funds; and they have a legal duty to their shareholders too. The public appreciate a truthful debate about what might work; and where a lot of monies would in fact would be better spent elsewhere.

It’s certainly low hanging fruit for politicians to support this worthy cause.

However, the scant attention to living well with dementia in many statements, in contrast to drug treatments, is very telling. The Department of Health will, however, be livestreaming the #G8dementia summit proceedings later this week. Details are here.

Not all dementia occurs in the elderly. Nonetheless, it is possible that health problems related to aging (including dementia of the Alzheimer type) are projected to add to the high clinical, social, and economic burden of caring for persons with dementia.

The Mediterranean diet has been associated with reduced risk for a wide range of age-related conditions such as stroke, type 2 diabetes, cardiovascular disease, and all-cause mortality. The traditional Mediterranean diet refers to a multinutrient dietary profile characterized by high intake of fruits, vegetables, cereals, and legumes; low consumption of saturated fats with olive oil as the main source of fat; moderate consumption of fish; low to moderate intake of dairy products (in the form of yogurt and cheese); low consumption of red meat and meat products; and moderate amount of alcohol (especially wine) usually consumed during meals.

Recently, a number of peer-reviewed pieces in the reliable academic literature have presented evidence for an association between a Mediterranean-type diet and decreased risk of dementia. Findings from prospective studies suggest that greater adherence to Mediterranean diet may be associated with slower cognitive decline and reduced risk of Alzheimer disease. In the light of these findings, it has been suggested that improving adherence to the Mediterranean diet may delay or prevent the onset of dementia.

A really helpful review was published by Lourida and colleagues earlier this year in the “Epidemiology” journal (Jul;24(4):479-89). Twelve eligible papers (11 observational studies and one randomized controlled trial) were identified, describing seven unique cohorts.

Despite methodological heterogeneity and limited statistical power in some studies, there was a reasonably consistent pattern of associations. Higher adherence to Mediterranean diet was associated with better cognitive function, lower rates of cognitive decline, and reduced risk of Alzheimer disease in nine out of 12 studies, whereas results for mild cognitive impairment were inconsistent.

Published studies suggest that greater adherence to Mediterranean diet is associated with slower cognitive decline and lower risk of developing Alzheimer disease. Further studies would be useful to clarify the association with mild cognitive impairment and vascular dementia. Long-term randomised controlled trials promoting a Mediterranean diet may help establish whether improved adherence helps to prevent or delay the onset of Alzheimer disease and dementia.

Only today, leading doctors warned the Government the battle against dementia should focus on the benefits of a Mediterranean diet rather than ‘dubious’ drugs. In an open letter to the Health Secretary, they said persuading people to eat fresh fruit and vegetables, nuts, fish and olive oil was ‘possibly the best strategy currently available’ for preventing Alzheimer’s and other memory-robbing diseases.

The letter’s signatories include Prof Clare Gerada, the former chairman of the Royal College of General Practitioners, and Dr David Haslam, chairman of the National Obesity Forum.

It reads:

‘We hope this crisis can be seen as an opportunity towards a real policy change, namely towards a Mediterranean diet, rather than towards the dubious benefits of most drugs.’

It goes on to say the evidence ‘strongly suggests’ that improvements to lifestyle will have a ‘far greater effect’ on the rising tide of dementia than drugs.

The call comes as dementia experts from the G8 countries prepare to travel to London for a summit hosted by the Prime Minister.

Dr Simon Poole, the GP who organised the letter, said: ‘It is all about looking at what pharmaceutical companies can do, which is actually not very much.

‘They talk up their medicine and then it is very often a damp squib. We want some sort of focus on prevention. Educating all generations, including our children, in the importance of a good diet in maintaining health in old age is a project which will take years, but is absolutely essential.’

‘We are calling upon policymakers to not only support the care and treatment of those who are already suffering from dementia, but to make significant investments in work which will see benefits beyond the period of one or two parliaments.’

There has also been a focus on individual components of the Mediterranean diet, such as [omega]-3 fatty acids or olive oil as the main source of monounsaturated fats. Although the advantages of Mediterranean diet are relevant for non-Mediterranean populations, it is often argued that studies are not always comparable because there are substantial differences in dietary composition among countries.

A more detailed examination reveals this is perhaps especially true for fatty acids. Although olive oil is the hallmark of Mediterranean diet, differences in the origin of monounsaturated fats or cooking style (eg, baked vs. fried) could partly explain these inconsistencies. Studies comparing types of olive oil concluded that compared with refined oil, virgin olive oil (rich in phenolic content) has additional anti-inflammatory and antioxidant properties beneficial to cellular function and cardiovascular health.

The Mediterranean diet may exert its effects on cognitive health through multiple biological mechanisms. Relationships with reduced risk of coronary heart disease, hypertension, diabetes, dyslipidemia, and metabolic syndrome have been observed, and these conditions have also been associated with mild cognitive impairment, vascular dementia (a dementia associated with general factors affecting the cardiovascular system such as smoking, cholesterol, diet, family history), or disease of the Alzheimer type.

Sticking to this Meditteranean diet may also facilitate metabolic control because it has been related to improved insulin sensitivity and glucose metabolism. Insulin is a chemical acting in the body which can affect our metabolism – it is an important “hormone” for us.

Furthermore, “oxidative stress” increases with age and results in “oxidative damage”—a state often observed in the brain of patients with Alzheimer disease. Typical components of the Mediterranean diet (namely fruits, vegetables, wine, and virgin olive oil) are rich in antioxidants such as vitamin C and E, carotenoids, and flavonoids. Decreased oxidative stress found in people adhering to a Mediterranean-type diet could partially explain their lowered risk for dementia.

And there’s a plausible biological mechanism for all this. Brain cells (neurone) are protected against oxidative stress by specialist chemicals, called “neurotrophins” (basic proteins) such as the brain-derived neurotrophic factor. There is some evidence that Mediterranean diet may increase plasma brain-derived neurotrophic factor concentrations. Inflammatory processes have also been suggested for Alzheimer pathogenesis. Higher concentrations of C-reactive protein, a nonspecific marker of inflammation, have been associated with increased risk for cognitive decline, Alzheimer disease, and vascular dementia, whereas better adherence to Mediterranean diet has been associated with lower levels of C-reactive protein.

Access to medicine has become a really important issue in the NHS. Already we are getting stories of rationing in the NHS emerging during the period of this Government (such as varicose veins stripping), so it is not particularly surprising if drugs which do have modest effect on memory for dementia are not a top priority. Encouraging people to learn about diet and how this might prevent thinking problems is therefore a worthy aim, as it might actually work better than many of the drugs ‘on offer’.  Senior doctors have advised this approach in fact.

Just because it’s not coming from Big Pharma with their massive marketing budgets doesn’t mean it’s a dead duck.

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Jeremy Hunt's message on dementia should have been 'screened' for damaging myths

My presumption is that I wish to be extremely positive about HM Government’s own volition about leading the G8 with the subject of dementia.

Also, the “Prime Minister’s Dementia Challenge”, which sets out a roadmap for dementia for this year and next, has been a success which I much admire.

David Cameron and Jeremy Hunt, and their team, must rightly be applauded.

However, some accidental problems with the latest message appear to have crept in unfortunately.

The article in the Telegraph says that, “Health Secretary Jeremy Hunt says it is “utterly shocking” that only half of people suffering from dementia are being formally diagnosed.”

You can watch the video here.

Recently in English policy a skirmish over screening has been temporarily staved off by certain stakeholders avoiding ‘the S word’.

They have decided to plump for the ‘C-word instead’.

“Case-finding”

But in fairness Jeremy Hunt MP, Secretary of State for Health, in the actual “piece to camera” does not use the word “suffering”.

This is particularly ironic as Hunt later says, “”We’ve got to overcome the stigma.”

A major thrust of dementia must be to destigmatise dementia, by emphasise the myriad of things which can be done to help individuals living with dementia, like improvements of the house and the outside environment, non-statutory advocacy or dementia friendly communities.

Hunt’s attempts to overcome the stigma are, unfortunately, somewhat mitigated by his claim that,

“Dementia is a really horrible condition.”

Hunt mentions that “This is not surprisingly because memory is an intrinsic part of all of this.”

The meme that memory problems are synonymous with dementia remains a persistent toxic misrepresentation.

Not all memory problems are dementia (depression can cause profound memory problems.)

Not all dementia presents with memory problems. One of the most common forms of dementia in the age group below 60 is the behavioural variant of frontotemporal dementia.

This presents typically with an insidious change in behaviour and personality, often not noticed by the person himself or herself (but noticed by somebody close by.)

Even some of such individuals can present with plum-normal brain scans.

Advanced MRI brain scans

This small fact would aggravate hugely physics experts to sit on dementia clinical steering groups perhaps, if they knew.

A number of parliamentarians have recently emphasised the need for prevention.

This is indeed a worthy claim.

“You can change your lifestyle to help to stave off the diagnosis.”

However the evidence for this claim is extremely scant.

Non-clinicians in policy must not give false hope to members of society.

This is extremely irresponsible.

Hunt continues, “GPs have been reluctant to give a diagnosis as they’ve thought that ‘nothing is really going to happen'”

There has been in recent years a language depicting war, between GPs and persons with a possible diagnosis of dementia.

There is a very damaging myth, perpetuated by some influential people in the third sector, that GPs are actively withholding a dementia diagnosis in some people.

This claim undermines the credibility and probity of medical professionals, but GPs are relatively defenceless against such a slur.

Hunt says, “If people are worried, come and talk to your GP.”

A moral dementia policy is giving correct support including non-pharmacological interventions to support people living with dementia, as well as support for carers who often experience significant pressures in caring themselves.

People need to be accurately diagnosed with dementia. A wrong ‘label’ of dementia, for a person with no dementia, can do much harm.

Nonetheless, the idea of identifying correctly new people with dementia such that they can be given the right support is a commendable one.

It’s essential though that we do not enmesh this with this policy goal becoming targets, and clinicians being thrown off track by perverse incentives which are not directly beneficial to patients of the NHS.

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"What's in it for me?" The importance of the 'built environment' for living well with dementia

built environments

Strangely enough, with the focus of drugs, drugs, and yet more drugs, there’s been relatively scant attention for the environment in which a person living with dementia finds himself or herself in.

Improving wellbeing for a person is essentially about understanding the past and present of that person, and building on that person’s beliefs, concerns and expectations about the future. But the idea that you can ignore the environment is simply science-fiction.

The design of care homes maters. The design of hospital wards matter. The design of towns including pavings and signs matters.

Such an approach sounds ambitious and joined up, but not impossible. There’s been a long and proud history in England of understanding the social determinants of health, including housing.

The Attlee Government also extended the powers of local authorities to requisition houses and parts of houses, and made the acquisition of land less difficult than before. In 1949, local authorities were empowered to provide people suffering from poor health with public housing at subsidised rents. That very same year, unemployment, sickness and maternity benefits were exempted from tax.

Recent research suggests that wellbeing in later life is closely related to the physical environment, which is an important mediator of ageing experiences and opportunities. The physical character of the built environments or neighbourhood in particular seems to have a significant impact on the mobility, independence and quality of life of older people living in the local community.

According to a “Greenspace Scotland” report from 2008, “Trust for Nature” is a community-based conservation organisation that focuses on the protection of private land of high conservation value in the state of Victoria, Australia.

In recent research by Inclusive Design for Getting Outdoors (ID’GO), 15% of questionnaire respondents (a large sample, nearing 1000 in sample size) had stumbled or fallen outside within the last 12 months. The real figure is likely to be higher, since past-year falls are often under-reported. Many of the environmental risk factors associated with outdoor falls appear to be preventable through better design and maintenance; factors including pavement quality, dilapidation and kerb height.

Abstract experiential qualities such as perceptions of ‘safety’ and ‘attractiveness’ have been identified as important factors in stated preferences for parks and green spaces and there has been much written over many years on landscape aesthetics  and how this might influence preference and use.

By contrast with research on environment and health, arguably this is a domain rich in theoretical concepts for the mechanisms behind engagement with the environment but poor in terms of tools to measure the detailed spatial and structural qualities of different landscapes in relation to how people actually use and experience them. For landscape designers, this is of crucial interest. There have been, historically, attempts to develop guidance based on general principles, but few tools actually to measure the dynamic spatial experience in practice.

A built environment for all ages is conceptualised as one that has been designed so that people can access and enjoy it over the course of their lifetime, regardless of ability or circumstance. Such environments are said to be designed “inclusively”. The I’DGO (Inclusive Design for Getting Outdoors) consortium was launched in 2004 to investigate how outdoor environments affect older people’s wellbeing and to identify what aspects of design help or hinder older people in using the outdoors. Their focus is on identifying the most effective ways of shaping outdoor environments inclusively. They support the needs and preferences of older people and disabled people, always seeking to improve their independence and overall quality of life.

I’DGO was set up to explore the ways in which being able to get out into one’s local neighbourhood impacts on older people’s wellbeing and what barriers there are to achieving this, day-to-day. The project asked the crucial question: why do we need a built environment for all ages? The first phase of research, which finished in 2006, involved over 770 people aged 65 or above. Participants were asked about their wellbeing and quality of life, how often and why they went outdoors and what features of their local neighbourhood helped or hindered their activity. Researchers also physically audited 200 residential neighbourhoods to look for barriers and benefits to getting around as a pedestrian.

The I’DGO research found quickly that older people went outdoors very frequently to socialise, exercise, get fresh air and experience nature. If they lived in a supportive environment – one that made it easy and enjoyable for them to get outdoors – they were more likely to be physically active, healthy and satisfied with life. Walking was by far the most common way that people spent their time outdoors, whether for recreation or transport (‘getting from A to B’). Participants in the I’DGO study who lived within 10 minutes’walk of an open space were twice as likely to achieve the recommended levels of healthy walking (2.5 hours/week) as those whose nearest open space was not local.

A major research goal has been to examine the specific attribute of neighbourhood streets – tactile paving at steps and crossings – and asks how this affects the biomechanics of walking and risk of falling in older people (the project run by the SURFACE Inclusive Design Research Centre and their colleagues in Health, Sport and Rehabilitation Sciences at the University of Salford). The benefits of tactile paving for blind and visually impaired people have been well established yet the system is not without its issues.

Tactile paving is not a policy area without its concerns, and a few in particular emerge from a report by the UK Health and Safety Executive. This report suggested that there is a need better to understand the extent and implications of incorrectly designed and laid tactile paving, and the toe clearance of an individual in negotiating paving ‘blisters’ and potential slip hazards. These factors appear to be crucial to older people, since many of the first phase ID’GO interviewees expressed concerns about falling
or feeling unstable on tactile surfaces and fall-related injuries are associated with loss of independence, morbidity and death in older people.

If we are to understand what qualities of the environment are important to an ability of individuals to ‘live well’, we need perhaps to acknowledge the diversity that exists in people’s capabilities, experience, desires and needs. This overall is a huge challenge for designers; the response conventionally has been to look for factors in the environment that matter to most people, or to a defined group of people, and to address those factors as if they were equally important. Yet for any individual, different qualities and elements in the environment may be a matter of indifference (e.g. certain colours if you are visually impaired) or vitally important (e.g. proximity of an accessible toilet if you have a weak bladder).

Such an approach builds on the concept of “affordance” and the reciprocal relationship between perceiver and environment. The concept of affordance links environment and human behaviour, or opportunities for action, and is therefore of particular interest in understanding how the environment might encourage or support people to be more active—a primary goal of public health policy. This is an insight of key relevance to investigating human behaviour in the landscape. As Appleton has put it, more succinctly, for any individual considering their landscape context, it helps us understand “what’s in it for me?” (Appleton, 1975).

Key text

Appleton, J. (1975) The experience of landscape, New York, NY: John Wiley.

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Where is the policy generally heading?

he most ‘perfect’ scenario for dementia screening would be to identify dementia in a group of individuals who have absolutely no symptoms might have subtle changes on their volumetric MRI scans, or might have weird protein fragments in their cerebrospinal fluid through an invasive lumbar culture; and then come up with a reliable way to stop it in its tracks  The cost, practicality and science behind this prohibit this approach.

There are well defined criteria for screening, such as the “Wilson Jungner criteria“. Prof Carol Brayne from the University of Cambridge has warned against the perils of backdoor screening of dementia, and the need for evidence-based policy, publicly in an article in the British Medical Journal:

“As a group of clinical and applied researchers we urge governments, charities, the academic community and others to be more coordinated in order to put the policy cart after the research horse. Dementia screening should neither be recommended nor routinely implemented unless and until there is robust evidence to support it. The UK can play a unique role in providing the evidence base to inform the ageing world in this area, whilst making a positive difference to the lives of individuals and their families in the future.”

However, a problem has arisen in how aggressively to find new cases of dementia in primary care, and a lack of acknowledgement by some that incentivising dementia diagnosis might possibly have an untoward effect of misdiagnosing (and indeed mislabelling) some individuals, who do not have dementia, with dementia. Unfortunately there are market forces at work here, but the primary consideration must be the professional judgment of clinicians.

Diagnosing dementia

There is no single test for dementia.

A diagnosis of dementia can only be confirmed post mortem, but there are ‘tests’ in vivo which can be strongly indicative of a specific dementia diagnosis (such as brain biopsy for Variant Creutzfeld-Jacob disease or cerebral vasculitis), or specific genetic mutations on a blood test (such as for relatively rare forms of the dementia of the Alzheimer type).

Memory vs non-memory functions in CANTAB

CANTABmobile is a new touchscreen test for identifying memory impairment, being described as a ‘rapid memory test’. The hope is that memory deficits might be spotted quickly in persons attending the National Health Service, and this is indeed a worthy cause potentially. In the rush to try to diagnose dementia quickly (and I have explained above the problem with the term “diagnose dementia”), it is easy to conflate dementia and memory problems. However, I demonstrated myself in a paper in Brain in 1999 using one of the CANTAB tests that patients with behavioural variant frontotemporal dementia (bvFTD) were selectively impaired on tests sensitive to prefrontal lobe function involving cognitive flexibility and decision-making. I demonstrated further in a paper in the European Journal of Neuroscience in 2003 that such bvFTD patients were unimpaired on the CANTAB paired associates learning test.

bvFTD is significant as it is a prevalent form of dementia in individuals below the age of 60. The description given by Prof John Hodges in the current Oxford Textbook of Medicine chapter on dementia is here. Indeed, this chapter cites my Brain paper:

“Patients present with insidiously progressive changes in personality and behaviour that refl ect the early locus of pathology in orbital and medial parts of the frontal lobes. There is often impaired judgement, an indifference to domestic and professional responsibilities, and a lack of initiation and apathy. Social skills deteriorate and there can be socially inappropriate behaviour, fatuousness, jocularity, abnormal sexual behaviour with disinhibition, or theft. Many patients are restless with an obsessive–compulsive and ritualized pattern of behaviour, such as pacing or hoarding. Emotional labiality and mood swings are seen, but other psychiatric phenomena such as delusions and hallucinations are rare. Patients become rigid and stereotyped in their daily routines and food choices. A change in food preference towards sweet foods is very characteristic. Of importance is the fact that simple bedside cognitive screening tests such as the Mini-Mental State Examination (MMSE) are insensitive at detecting frontal abnormalities. More detailed neuropsychological tests of frontal function (such as the Wisconsin Card Sorting Test or the Stroop Test) usually show abnormalities. Speech output can be reduced with a tendency to echolalia (repeating the examiner’s last phrase). Memory is relatively spared in the earl  stages, although it does deteriorate as the disease advances. Visuospatial function remains remarkably unaffected. Primary motor and sensory functions remain normal. Primitive refl exes such as snout, pout, and grasp develop during the disease process. Muscle fasciculations or wasting, particularly affecting the bulbar musculature, can develop in the FTD subtype associated with MND.”

Memory tests, mild cognitive impairment and dementia of Alzheimer type

Nobody can deny the undeniable benefits of a prompt diagnosis, when correct, of dementia, but the notion that not all memory deficits mean dementia is a formidable one. Besides, this tweeted by Prof Clare Gerada, Chair of the Royal College of General Practitioners, to me this morning I feel is definitely true,

normal ageing

A political drive, almost in total parallel led by the current UK and US governments, to screen older people for minor memory changes could potentially be leading to unnecessary investigation and potentially harmful treatment for what is arguably an inevitable consequence of ageing. There are no drugs that prevent the progression of dementia according to human studies, or are effective in patients with mild cognitive impairment, raising concerns that once patients are labelled with mild cognitive deficits as a “pre-disease” for dementia, they may try untested therapies and run the risk of adverse effects.

The idea itself of the MCI as a “pre-disease” in the dementia of Alzheimer type is itself erroneous, if one actually bothers to look at the published neuroscientific evidence. A mild cognitive impairment (“MCI”) is a clinical diagnosis in which deficits in cognitive function are evident but not of sufficient severity to warrant a diagnosis of dementia (Nelson and O’Connor, 2008).It is claimed that on the CANTABmobile website that:

statement

However, the evidence of progression of MCI (mild cognitive impairment) to DAT is currently weak. It might be attractive to think that MCI is a preclinical form of dementia of Alzheimer Type, but unfortunately the evidence is not there to back this claim up at present: only approximately 5-10% and most people with MCI will not progress to dementia even after ten years of follow-up (Mitchell and Shiri-Feshki, 2009).

An equally important question is also the specificity and sensitivity of the CANTABmobile PAL test. Quite a long explanation is given on their webpage again:

Specificity and sensitivity of PAL

However, the reference that is given is unrelated to the data presented above. What should have appeared there was a peer-reviewed paper analysing sensitivity and sensitivity of the test, across a number of relevant patient groups, such as ageing ‘normal’ volunteers, patients with geriatric depression, MCI, DAT, and so on. A reference instead is given to a paper in JAMA which does not even mention CANTAB or CANTABmobile.

NICE, QOF and indicator NM72

A description of QOF is on the NICE website:

“Introduced in 2004 as part of the General Medical Services Contract, the QOF is a voluntary incentive scheme for GP practices in the UK, rewarding them for how well they care for patients.

The QOF contains groups of indicators, against which practices score points according to their level of achievement. NICE’s role focuses on the clinical and public health domains in the QOF, which include a number of areas such as coronary heart disease and hypertension.

The QOF gives an indication of the overall achievement of a practice through a points system. Practices aim to deliver high quality care across a range of areas, for which they score points. Put simply, the higher the score, the higher the financial reward for the practice. The final payment is adjusted to take account of the practice list size and prevalence. The results are published annually.”

According to guidance on the NM72 indicator from NICE dated August 2013, this indicator (“NM72”) comprises the percentage of patients with dementia (diagnosed on or after 1 April 2014) with a record of FBC, calcium, glucose, renal and liver function, thyroid function tests, serum vitamin B12 and folate levels recorded up to 12 months before entering on to the register  The timeframe for this indicator has been amended to be consistent with a new dementia indicator NM65 (attendance at a memory assessment service).

Strictly speaking then QOF is not about screening as it is for patients with a known diagnosis of dementia. If this battery of tests were done on people with a subclinical amnestic syndrome as a precursor to a full-blown dementia syndrome with an amnestic component, it might conceivably be ‘screening’ depending on how robust the actual diagnosis of the dementia of those individuals participating actually is. As with all these policy moves, it is very easy to have unintended consequences and mission creep.

According to this document,

“There is no universal consensus on the appropriate diagnostic tests to be undertaken in people with suspected dementia. However, a review of 14 guidelines and consensus statements found considerable similarity in recommendations (Beck et al. 2000). The main reason for undertaking investigations in a person with suspected dementia is to exclude a potentially reversible or modifying cause for the dementia and to help exclude other diagnoses (such as delirium). Reversible or modifying causes include metabolic and endocrine abnormalities (for example, vitamin B12 and folate deficiency, hypothyroidism, diabetes and disorders of calcium metabolism).

The NICE clnical guideline on dementia (NICE clinical guideline 42) states that a basic dementia screen should be performed at the time of presentation, usually within primary care. It should include:

  • routine haematology
  • biochemistry tests (including electrolytes, calcium, glucose, and renal and liver function)
  • thyroid function tests
  • serum vitamin B12 and folate levels.”

It is vehemently denied that primary care is ‘screening’ for dementia, but here is a QOF indicator which explicitly tries to identify reversible causes of dementia in those with possible dementia.

There are clearly issues of valid consent for the individual presenting in primary care.

Prof Clare Gerada has previously warned to the effect that it is crucial that QOF does not “overplay its hand”, for example:

“QOF is risking driving out caring and compassion from our consultations. We need to control it before it gets more out of control – need concerted effort by GPC and RCGP.”

Conclusion

Never has it been more important than to heed Prof Brayne’s words:

“As a group of clinical and applied researchers we urge governments, charities, the academic community and others to be more coordinated in order to put the policy cart after the research horse.”

In recent years, many glib statements, often made by non-experts in dementia, have been made regarding the cognitive neuroscience of dementia, and these are distorting the public health debate on dementia to its detriment. An issue has been, sadly, a consideration of what people (other than individual patients themselves) have had to gain from the clinical diagnosis of dementia. At the moment, some politicians are considering how they can ‘carve up’ primary care, and some people even want it to act as a referral source for private screening businesses. The “NHS MOT” would be feasible way of the State drumming up business for private enterprises, even if the evidence for mass screening is not robust. The direction of travel indicates that politicians wish to have more ‘private market entrants’ in primary care, so how GPs handle their QOF databases could have implications for the use of ‘Big Data’ tomorrow.

With headlines such as this from as recently as 18 August 2013,

£! headline

this is definitely ‘one to watch’.

Further references 

Beck C, Cody M, Souder E et al. (2000) Dementia diagnostic guidelines: methodologies, results, and implementation costs. Journal of the American Geriatrics Society 48: 1195–203

Mitchell, A.J., and Shiri-Feshki, M. (2009) Rate of progression of mild cognitive impairment to dementia -meta-analysis of 41 robust inception cohort studies. Acta Psychiatr Scand, 119(4), pp. 252-65.

Nelson, A.P., and O’Connor, M.G. (2008) Mild cognitive impairment: a neuropsychological perspective, CNS Spectr, 13(1), pp. 56-64.

National Institute for Health and Clinical Excellence (2006) Dementia. Supporting people with dementia and their carers in health and social care. NICE clinical guideline 42

Many thanks to @val_hudson for a useful critical comment about an earlier version of this blogpost.

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