Tag Archives: Department of Health

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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The "dementia prevalence calculator": for a person to access a timely diagnosis, or for private markets to access the person?

The market philosophy has gripped the NHS by the jugular through policy developments from successive governments. It is argued that all health care systems in the world have to design effective allocative mechanisms for the available “scarce health care resources”. The “dementia prevalence calculator” tool also enables health and care communities to: calculate local dementia diagnosis rates, forecast local dementia prevalence, view trajectories and set “ambitions” (aka targets) for improvement in diagnosis rates and compare diagnosis rates with other localities. Its main problem has been that it has been crowbarred in through various side windows, except nobody knows why public health experts didn’t call for this calculator to come in through a front door. One can now view and compare diagnosis rates on the “Ambition Map”, and link to the “Knowledge Portal” to access a wealth of resources to improve dementia diagnosis rates, and diagnosis pathways. All of this will have taken time, effort and money to set up, so the question of whether it’s worth it, given ‘scarce resources’, is clearly in the public interest. Here is one such example of the Department of Health’s attempts and their partners to disseminate information about “the dementia map”.

Dementia map

So what’s the point of these data? Burns concedes that estimating the number of people who have dementia is important for both local planning and national guidance. Burns freely admits too there have been problems in the past:

“Most current estimates of dementia prevalence (the number of people affected by the disorder) and incidence (the number of people developing it over a defined period, usually one year) are based on studies dating back to the 1980s.”

It’s become clear that a huge “democratic deficit” has engulfed the English dementia policy. The problem for Prof Alistair Burns, who is a genuinely a nice and well-meaning man, is that he can become indundated with various complaints from academics and practitioners. An example is the G8 dementia summit which was presented as a ‘once in a lifetime opportunity’ to talk about dementia. What did, however, happen was that it became a ‘once in a lifetime opportunity’ for various myths to be propagated by the media, using highly charged words such as ‘shocking’, ‘devestating’, ‘crippling’, ‘horrible’, ‘horrific’, portraying the notion that people now on receiving a diagnosis of dementia are just counting their hours until their death. It, likewise, cannot be overstated that the drugs for memory or attention simply do not have a huge effect in the vast majority of patients, and certainly after about fifteen years of published studies on these “cholinesterase inhibitors”, the evidence that they slow down the rate of loss in critical parts of the brain is not terrific. Academics in dementia are currently collaborating across geographical boundaries, so the idea of there now being suddenly a world collaboration is FALSE. A cure for a single dementia is FALSE as there are hundreds of different causes of dementia. Dementia charities of course can mobilise individuals with dementia to contribute in pan-global drug trials in what has been euphemistically been called ‘co-production’, discovering new drugs based on the basis of personal DNA genomic information. Looking at your genetic make-up might tell a practitioner or drug-company your risk of subsequently developing dementia, and so it goes on. The issue is not subjecting the designers of English dementia policy with time-consuming vexatious ‘attacks’; it is hopefully that we can all have an open, transparent discussion of some of the ‘unintended consequences’ of the English dementia policy currently in progress.

In March 2012 the Prime Minister, David Cameron, published his challenge on dementia which set out an ambitious programme of work to push further and faster in delivering major improvements in dementia care and research by 2015, building on the National Dementia Strategy (published on 3 February 2009). Central to the challenge is the requirement that from April 2013, there needs to be a quantified ambition for diagnosis rates across the country, underpinned by robust and affordable local plans (NHS Mandate). This is of course so remarkable in itself in the State having such a strangehold on policy which should in theory be devolved as locally as possible to experts and professionals. A painfully obvious point to those who have done a medical degree is that there will be variation in some rates of particular dementias across the country anyway. For example, in some populations with a predominantly Asian immigrant population with certain risk factors, they might be at high risk of vascular dementias. As it happens, near Warsaw in Poland is thought to have a high prevalence of dementia due to copper overload due to a genetic cluster of an inherited copper metabolism problem called Wilson’s disease. But presumably certain dementia charities and certain politicians want you ‘to get angry’ at those GPs who are underdiagnosing dementia, because they are somehow colluding in keeping this information away from you. This is by the way against their professional code, but you cannot expect people without a medical background who are quite senior in charities or politics to know that necessarily.

I have found that having lack of ability to have a balanced debate (due to enormous information asymmetries) has been quite dispiriting, and clearly hampered by the virtual lack of published research papers in the medical professional literature. Hopefully, the University of Stirling will be able to diminish this ‘research gap’, now that they have been awarded a major grant to investigate this issue properly with no vested interests. This is the only paper on Medline from 1996 if you search for the term “dementia prevalence calculator”. And there is no doubt that the claims of some of the drugs used to treat early dementia in the NHS have been overinflated. Luckily, largely thanks to the work of Glenis Willmott MEP who has been leading negotiations as the European Parliament’s rapporteur on the clinical trials regulation, pharmaceutical companies and academic researchers will be obliged to upload the results of all their European clinical trials to a publicly accessible database, if a deal reached this week is approved, according to a recent report. Indeed, Pharma have got it right about “openness”, but not in the sense of using regulation to allay fears about patient privacy and confidentiality – Big Pharma need to share with the general public their results, and their particular motives and intentions for dementia policy especially if the descriptions are otherwise not easily forthcoming.

I openly admit to being extremely disappointed at one particular plank of English dementia policy: the “dementia prevalence calculator”. It’s incredibly easy to get hold of the marketing shills for CCGs about how they can overcome “the diagnosis gap” for the reported lack of diagnosis of dementia; but there again, the discussion of how there are hundreds of different types of dementia in different age groups is not forthcoming, together with a less than candid explanation of how risk factors for dementia might be tackled. For something so fundamental to English dementia policy, it was deeply distressing to see Prof Carol Brayne’s question on where the Prime Minister saw his “Challenge” progressing on dementia to be passed ‘down the line’ like a rugby ball going backwards with effortless ease first to Mr Jeremy Hunt and then with Dr Margaret Chan. To get a decent grasp on why there has been such a drive to improve dementia rates, you have to go across the Atlantic and research terms such as “needs based resource allocations” in health maintenance organizations (sic). These papers are written entirely from the business model perspective, so do not have any intention of wishing to address remotely the professional concerns of senior clinicians in dementia.

Like all 500 pages of the Health and Social Care Act (2012), there was no open discussion of the need to “turbo boost” the outsourcing of NHS contracts to the private sector. Likewise, meaningful discussion of the perils of ‘case finding’ and ‘screening’ in dementia have largely been throttled at source (though Dr Martin Brunet has been raising awareness of the perils of incentivising GPs to up their rates of dementia diagnosis through ‘case finding’ in primary care, of course drawing attention to the hugely stigmatising “false diagnoses of dementia”). Nonetheless, through the combined efforts of the European ALCOVE project (including Prof Burns and Dr Karim Saad), it’s been successfully argued that,

“Dementia happens to people, living in their families and their communities. It does not happen just to their brains. When people have worrying symptoms they want health care professionals who can spot the signs, take their concerns seriously, diagnose the problem accurately, so they can get the most up to date treatment and advice.”

This is a helpful slide from Prof Dawn Brooker’s presentation for the UK Dementia Congress Conference 2013 entitled, “Benchmarking against ALCOVE recommendations for timely diagnosis in dementia”:

Dementia Awareness

This discussion embarrassingly even led to Prof Burns trying to find Dr Brunet at his practice for a frank chat about the policy, but Martin unfortunately was away that day.

Binscombe

Of course, if you’re going to introduce a policy to ‘up the dementia rate’, it possibly will run into problems given that the actual prevalence of dementia has appeared to be falling. The first UK Cognitive Function and Ageing Study (CFAS), known as the Medical Research Council (MRC) CFAS, began in 1989. One of a suite of European prevalence and incidence studies (forming the EURODEM collaboration), it was designed to test for geographical differences within the UK, across populations with widely varying characteristics, including vascular health. The study published by Matthews and colleagues (2013) in the Lancet confirmed that later-born populations have a lower risk of prevalent dementia than those born earlier in the past century. The general prevalence of dementia (overall numbers of people) in the population might be subject to change. Factors that might increase prevalence include: rising prevalence of risk factors, such as physical inactivity, obesity, and diabetes; increasing numbers of individuals living beyond 80 years with a shift in distribution of age at death; persistent inequalities in health across the lifecourse; and increased survival after stroke and with heart disease. By contrast, factors that might decrease prevalence include successful primary prevention of heart disease, accounting for half the substantial decrease in vascular mortality, and increased early life education, which is associated with reduced risk of dementia. Where possibly primary care will have the greatest impact will be in tackling the risk factors they do anyway for cardiovascular disease, i.e. better diabetic control, tackling cholesterol, smoking, ‘poor diet’, or high blood pressure. This in itself is not a valid reason to avoid improving diagnosis rates of dementia (especially these are treatable risk factors for vascular dementias.)

Health maintenance organizations (HMOs) have been argued by their supporters as a “cost-effective’ way to provide health care. In the United States, in allocating resources in the HMO, the rationing of preventive services appears to be one of the principal questions where the potential benefits (i. e., efficacy) of a service are considered in relation to costs of healthcare. The direct counterpart of the HMO in English health policy, following the enactment of the Health and Social Care Act (2012), is the “clinical commissioning group”, which act as state insurance schemes for pooling risk in population samples.

Just because there’s no effective treatment, there’s still a business case to be made for ‘opening up new markets’ of persons with dementia. For example in the NHS Outcomes Framework 2013/4 domain CB_A9 covers an estimated diagnosis rate for people with dementia, with an aim of “improving the ability of people living with dementia to cope with symptoms, and access treatment, care and support.“. The rationale is therefore stated as:

“A diagnosis enables people living with dementia, and their carers/families to access treatment, care and support, and to plan in advance in order to cope with the impact of the disease. A diagnosis enables primary and secondary health and care services to anticipate needs, and with people living with dementia, plan and deliver personalised care plans and integrated services, thereby improving outcomes.”

According to articulation of neo-liberal ideology, the main justification of the reforms is to make resource allocation “more efficient, more innovative and more responsive to consumers’ preferences” than centrally integrated health systems (Ven 1996, p. 655). The effect of this change in philosophy is the introduction of activity-based resource allocation and funding as a system of paying hospitals and other health care providers on the basis of the work they perform rather than previously applied defined budgets based en bloc global contractual considerations. This new system relies on cost-and-volume and cost-per-case contractual relationships, in which payments are closely linked with the services offered, and clearly the information from “dementia prevalence calculators” is useful here. Conceptually, “dementia prevalence calculators” have been presented on equity grounds, i.e. tackling the inequity of a postcode-lottery diagnosis of dementia. However, this makes a fundamental assumption that there cannot be geographical variations in the prevalence of dementia. I repeat the point – any practising physician would know that this assumption is entirely erroneous, as vascular dementia prevalence rates for cardiopaths for diabetic hypertensive individuals in Tower Hamlets in a ghee-laden diet might be hypothesised to be quite high? The actual drive for the ‘dementia prevalence calculator’ is to open up new active markets, in a form of ‘payment of results’. According to Gay and Kronedfeld (1990), the gradual evolvement of an activity based resource allocation can be traced to the United States, where from 1983 most reimbursement for health care providers had been based upon the Diagnosis-Related Group (DRG) where patients within different categories were classified as clinically similar and were expected to use the same level of hospital resources.

Having a ‘care plan’ for dementia is potentially advantageous in that it can provide harmonisation with private insurance systems. The ‘Kaiser Permanente Care Management’ program contains guidelines and recommendations on how dementia care should be provided to Kaiser enrollees. The new program is an informational resource only and is not a substitute for clinical judgment based on the individual needs of patients. The program includes nine “key principles” on diagnosing and caring for patients with dementia and support for their caregivers. These principles include early identification and diagnosis, connecting caregivers to vital community resources, developing a care plan, and monitoring and adjusting medication use. With the introduction of “whole person care” (or similar models of integrated care in the next government), it is likely health and social care will be taken down a “final common pathway” of the ‘personal budget’ or ‘individualised’ budget (see this article for a recent discussion of some of the key themes from the English healthcare thinktanks). The commercialisation of care, under the guise of control and budgets, is, in fact, of course a complete anethema to genuine principles of professional person-centred care. And merging a universal system which has lots of highly personal data (NHS) with one that is heavily conditional (benefits) has all kinds of risks. In the long run it could make it still easier to restrict access to healthcare on the basis of economic status or behaviour.

While GPs and the public are clearly none-the-wiser about the goal of upping the diagnosis rates, already work is being done on the barriers and solutions for implementation of personal health budgets in dementia. Claire Goodchild’s report for the Mental Health Foundation from October 2011 still makes for interesting reading. Goodchild argues that, “individualised, tailored support and care that a personal budget can facilitate can have enormous benefits to a person with dementia“. The irony is of course that Big Pharma may not actually end up the big beneficiaries of this drive, unless they can make their medications relevant to individuals with dementia in this brave new world. While the G8 conference was an effective pitch for personalised medicines for Big Pharma, relatively little attention was given to psychological therapies or carers, aside from ‘dementia friendly communities’ which bring competitive advantage to the included corporates (and benefits for persons with dementia too). Personal budgets are all about choice and control; it is unlikely that a person with dementia will be unaware of the personal spending decisions that he or she can make to improve wellbeing (deferred to a carer where that person does not have capacity); but other valid interventions do include the assistive technologies and innovations which curiously did also make a mention in the G8 dementia.

Therefore, at first blush, it might look a bit random having a ‘dementia prevalence calculator’ and then all the shennanigans of the G8 dementia summit, but whilst the English government cannot as such make dementia ‘wealth creating’, it can do its best to open up new markets. It hasn’t been an accident that the question, “Have you had problems with your memory?”, has been suggested for those ‘health MOTs‘ which private healthcare would love to get off the ground. And the big beauty of this plan when NHS budgets are looking to do ‘more with less’ or implement ‘efficiency savings’ (or cuts to frontline care, more accurately) is that the NHS budget itself won’t ‘take the hit‘. It is hoped that with the implementation of whole person care budgets somebody will be able to ‘top up’ payments for care (e.g. “co-payments”), and the patient (or customer) will now pay for care providers in the private sector too. Do the treatments actually have to be proven to work? Absolutely not, if the experience in personal health budgets is anything to go by, but that’s not the point. As David Cameron might say, “Oh come on.. please do keep up!”

Further reading

Gay E.G. and Kronedfeld J.J. (1990). “Regulation, retrenchment – the DRG experience: problems from changing reimbursement practice”. Social Science and Medicine. 31 (10), pp. 1103-1118.

Ven, W.P.M.M., van de. (1996). “Market-oriented health care reforms: trends and future options”. Social Science and Medicine. 43 (5), pp. 655-666.

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

Trade fair for blog

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So why such a focus on pharmacology?

Why so little on ‘person centred care’?

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

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

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

Anna remarked recently,

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

Anna Hepburn continued,

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

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

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

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

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

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

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

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

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

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

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

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

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

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Background to the world of assistive technology

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It is widely propagated in the media that the two major drivers for ‘increased costs of caring’ for the National Health Service (NHS) comprise the ageing population, as well as the increasing rôle that technological advances will play. Both factors are of course subject to ferocious debate regarding the economic sustainability for the NHS, but certainly one potent myth is that assistive technologies are always expensive. This is not true, and the field of assistive technologies is ever expanding.

David Gems (2011) argues that gerotechnology is at the heart of living well in the context of aeing:

[Another] goal of research on ageing is to improve the health of older people. Here, biogerontology is akin to other biomedical research topics, sharing with them the goal of understanding the biological mechanisms that underlie pathology. The particular value of such understanding is that it enables the development of therapeutic treatments, leading to improved health and wellbeing.
A formidable challenge still remains in the relative lack of evidence for pursuing good design principles as well as assistive technologies in improving living well with dementia. For example, the National Dementia Strategy (2009) provides the following.

The evidence base on design principles is sparse, but there is consensus on key principles and a number of good practice checklists are available. There is a more substantial evidence base to show the opportunities offered by assistive technology and telecare to enable people with dementia to remain independent for longer, and in particular to help the management of risk. But the data on newer approaches are still sparse and inconclusive. An evaluation of one scheme demonstrated cost effectiveness and reports of improved quality of life. Large-scale [Department of Health] field trials of such technology are currently under way.

Dementia conditions have the potential to make day-to-day life more difficult. It is clearly very difficult to ‘know’ what an individual feels in terms of his or her wellbeing, even if he or she is unaffected by dementia, even though a conceptual framework of general consciousness is now under way (see, for example, Crick and Koch, 2003). Indeed, as Greenfield (2002) explains, the relationship between the words ‘consciousness’ and ‘mind’ merit attention.

Emotions play a critical role in the evolution of consciousness and the operations of all mental processes (Izard, 2009). Little things like mislaying keys, forgetting to turn off the taps or leaving the gas unlit can prove frustrating or even create hazards.

Orpwood (2007) has argued that mechanisms underlying consciousness and qualia are likely to arise from the information processing that takes place within the detailed micro-structure of the cerebral cortex. It looks at two key issues: how any information processing system can recognise its own activity; and secondly, how this behavior could lead to the subjective experience of qualia. In particular, it explores the pattern processing capabilities of attractor networks, and the way that they can attribute meaning to their input patterns and goes on to show how these capabilities can lead to self-recognition. That paper suggests that although feedforward processing of information can be effective without attractor behaviour, when such behaviour is initiated, it would lead to self-recognition in those networks involved. It also argues that attentional mechanisms are likely to play a key role in enabling attractor behaviour to take place.

There has become a growing feeling that ‘assistive technologies’ (AT) may provide more support for the carer than for the individual with dementia (Kinney et al., 2004), or to ease service provision. However, there have been some noteable exceptions to this focus on security and safety, such as the work of Topo and colleagues (Topo et al., 2004) on the enjoyment of music, and Alm and colleagues (Alm et al., 2005) on general reminiscence.

However, the influence of engineering on the quality of life research has come to a fore in most recent years (for example Orpwood et al., 2007). The INDEPENDENT study has been specifically aimed at designing technology to support quality of life. This collaborative project involved academic engineers, social scientists and architects, together with representatives of user groups and a manufacturer. The design work was based on a comprehensive user survey in which people with dementia themselves highlighted the factors which affected their quality of life. These data were analysed through a series of multidisciplinary workshops through the whole consortium.

There have been, nonetheless, a number of concerns raised about the assistive technology. Roger Orpwood submitted the following comment to the consultation held by the Nuffield Council on Bioethics summarised in ‘Dementia: ethical issues’ between May 2008 and July 2008.

Care professionals often express concern about the use of assistive technology because they see it as something to replace human care. There is no doubt that there is a real danger that some purchasers may see it in this way, either to save money on the part of local authorities, or to reduce the need for direct support on the part of relatives. Those of us involved in developing such equipment see it more as augmenting human care rather than replacing it. However there are some things technology can do that is better than human support. It doesn’t get tired or frustrated, it can operate 24 hours a day, and it clearly doesn’t get upset by the behaviour of the person with dementia. There is evidence from our own work that technology can provide a much clearer picture of how the user is getting on than can care staff. Our last client in London had a major sleep problem that no-one had picked up, but as soon as our sensor network was turned on the problem shouted at us. So technology has an important role to play, and can do some things better than human carers, but it cannot be a replacement for human care, and all the expression of feeling, empathy and understanding that humans can provide. There are major ethical concerns if it is viewed as a replacement.

Suggested readings

Crick F, Koch C. (2003) A framework for consciousness, Nat Neurosci, 6(2), pp. 119-26. [Review.]

Department of Health (2009). Living well with dementia: A NationalDementia Strategy: Putting people first, London: Her Majesty’s Stationery Office, available at: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/168221/dh_094052.pdf

Gems, D. (2011) Tragedy and delight: the ethics of decelerated ageing, Philos Trans R Soc Lond B Biol Sci, 366(1561), pp. 108-12.

Greenfield, S. (2002) Mind, brain and consciousness, British Journal of Psychiatry, 181, pp. 91-93.

Izard, C. (2009) Emotion theory and research: highlights, unanswered questions and emerging issues, Annu Rev Psychol, 60, pp. 1-25.

McKinney, K.M., Kart, C.S., Murdoch, L.D., and Conley, C.J. (2004) Striving to provide safety assistance to families of elders: the SAFE house project, Dementia, 3, pp. 351-370.

Nuffield Council of Bioethics. (2009) Dementia: ethical issues, available at: http://www.nuffieldbioethics.org/sites/default/files/Nuffield%20Dementia%20report%20Oct%2009.pdf.

Orpwood, R. (2007) Short communication: neurobiological mechanisms underlying qualia, Journal of Integrative Neuroscience, 6(4), pp. 523–540.

Topo, R., Maki, K., Saarikalle, K., Clarke, N., Begley, E., Carhill, S., Arsenlind, J., Holthe, T., Morbey, H., Hayes, K., and Gillard, J. (2004) Assessment of music-based multimedia program for people with dementia, Dementia, 3, pp. 331-350.

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A digital strategy for the 'Dementia Challenge' and the 'Dementia Challengers' website

There is a debate – yet to reach proper fruition – on the extent to which individuals can ‘maintain and manage their own health’, and that healthy living is not always an individualised, purely rational process of information-seeking and correct choices that result in improved health and independence (Henwood, Harris and Spoel, 2011).

Living well with dementia nonetheless appears to involve supporting individuals in making decisions appropriate for them, and these are decisions which directly affect their care and support. However, as a result of the dementia itself, a person’s mental capacity can change, and the nature of this decision-making process will change, with carers involved in reviewing the needs and preferences of individuals with dementia as their circumstances change. Whilst the focus of this book is not legal, and certainly an intention of this book is not to give any medical or legal advice, this chapter introduces the very important issue of independent advocacy services, as access-to-justice is an important feature of all civilised societies.

A key to making informed decisions is having full, accurate information.

However, the information can be incredibly overwhelming. Lee  (@dragonmisery) decided to organise this information for carers in an organised way. Her impressive website, “Dementia challengers: Signposting carers to online resources” (http://www.dementiachallengers.com), is a great place for information about dementia, and this website contains information specifically for carers.  Clearly, accurate and complete information such as on this website is essential for individuals with dementia and their immediates to be able to exercise control and choice properly in negotiating access to resources.

Dementia Challengers

A previous policy document, “Putting People First: A shared vision and commitment to the transformation of Adult Social Care”, amongst others, had made a close link between person-centred care and ‘choice and control’.

Ensuring older people, people with chronic conditions, disabled people and people with mental health problems have the best possible quality of life and the equality of independent living is fundamental to a socially just society. For many, social care is the support which helps to make this a reality and may either be the only non-family intervention or one element of a wider support package. The time has now come to build on best practice and replace paternalistic, reactive care of variable quality with a mainstream system focussed on prevention, early intervention, enablement, and high quality personally tailored services. In the future, we want people to have maximum choice, control and power over the support services they receive.

Lee is specifically mentioned by Anna Hepburn (@AnnaHepburnDH), Digital Communications Manager for Social Care, in an article entitled ‘Digital engagement on dementia’ on the Department of Health website.

As one of the #dementiachallengers, Lee (@dragonmisery) has set up the Dementia Challengers site to signpost online resources for people caring for someone with dementia. Nothing demonstrates better how the Dementia Challenge is more than a government initiative – and how it has its own digital life – than people who care about dementia creating their own digital community and helping others.

Anna Hepburn in her online article from 16th April 2013 then explains how this is consistent with the wider ‘digital strategy’ from the Department of Health (and other Government departments):

Digital isn’t just about publishing anymore. The Department of Health (DH) digital team certainly knows that, but there are plenty of people within the department – and across government – still to be convinced of the wider benefits of digital, or uneasy about new ways of working.

Tapping into this community provides a great opportunity for policy colleagues to engage with people with day-to-day experience of living, caring or working with dementia. I’ve learnt a great deal from them myself and now I want to find ways of extending those benefits to the dementia policy team. So this is the next step, to fulfil some of the central aims of the DH digital strategy – embedding digital processes in the way we work, giving policy colleagues the tools and confidence to engage digitally, and helping them identify the most appropriate digital tools and techniques for each stage of the policy cycle. And I’ll continue to try out new digital ways of opening up our work, such as the live blog from the Dementia Village, which helped extend the reach of the event.

Stephen Hale (@hmshale) is the ‘Head of Digital’ for UK Department of Health. The emphasis on open policymaking by the Department of Health is a welcome aspect of its digital strategy (Strategy). It is through this Strategy that the Department of Health have committed to using digital tools and techniques to improve upon an open policymaking process. The five stages are:

Stage 1: Shaping the policy product

Stage 2: Engaging stakeholders

Stage 3: Building robust analysis and evaluation

Stage 4: Finding practical solutions and enabling delivery

In the business sector, Gomes-Casseres (1996), in a very famous work called, “The Alliance Revolution: the new shape of business rivalry” has advanced the thesis of constructing networks actively to seek out and incorporate external knowledge into the innovative processes of businesses. Social networks play an important role in the sourcing and sharing of information, ideas, and knowledge, particularly where they span functional, divisional, and organisational boundaries. However, social networks are dynamic, personal, and unrecorded, and, as a result, they are difficult to manage and direct. Organisational networks also play an important role in the innovation process; they are flexible, enabling network members to reposition themselves more speedily in response to changes in technology and market. They also bring together distributed resources, knowledge, and competences.

The open innovation paradigm for firms, pioneered by Henry Chesbrough (2003), can be interpreted going beyond just using external sources of innovation such as customers, rival companies, and academic institutions, and can be as much a change in the use, management, and employment of intellectual property as it is in the technical and research driven generation of intellectual property. There are clear lessons to be learnt in the development of policy about dementia in a way that includes opinions of all stakeholders, not just the usual ones.

Useful readings

Chesbrough, H.W. (2003) Open Innovation: The new imperative for creating and profiting from technology, Boston: Harvard Business School Press.

Department of Health (2012) Department of Health Digital Strategy [20th December], available at: http://hale.dh.gov.uk/2012/12/20/the-dh-digital-strategy/.

Gomes-Casseres, B. (1996) The Alliance Revolution, The New Shape of Business Rivalry, Cambridge, MA: Harvard University Press.

Henwood, F, Harris, R, and Spoel, P. (2011) Informing health? Negotiating the logics of choice and care in everyday practices of healthy living, Social Health & Medicine, 72, 2026-2032.

Hepburn, A. (2013) Digital engagement on dementia. [16th April], available at: http://digitalhealth.dh.gov.uk/digital-engagement-on-dementia/

UK Government/LGA/ADASS/NHS (2007) Putting People First: A shared vision and commitment to the transformation of Adult Social Care, London: Her Majesty’s Stationery Office, available at: http://www.cpa.org.uk/cpa/putting_people_first.pdf.

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I am taking my 11000 Twitter followers all the way in promoting wellbeing in dementia

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I am taking my 11000 followers on Twitter (@legalaware) all the way in engagement over the G8 ‘dementia summit’.

Anna Hepburn at the Department of Health will be spearheading implementation of its own digital strategy on 11 December 2013, which I am looking forward to enormously (here).

A friend of mine is a prominent campaigner for dementia. He lives with a type of dementia which is quite common in a certain age group.

I was aghast when he said this week he had attended a clinical commissioning group meeting, but had faced stigmatising language about dementia. The leader of that meeting had referred to someone having ‘a bit of dementia’.  My friend was not impressed, but politely wrote to him afterwards. The leader replied with dignity.

But this for me epitomises the uphill battle those of us who genuinely care about dementia really face.

My baptism of fire into the world of dementia is when I did cognitive assessments in Cambridge of patients with frontal dementia, for Professor John Hodges who was chair of behavioural neurology at the time.

Since then, and bear in mind that this is more than ten years ago, I have firmly believed that there is no more important voice than the person with dementia.

Also, it has become apparent to me that there are many in the caring professions, including of course carers who confront challenges to their own health. It seems that they also are expected to tiptoe with effortless ease through the maze of the law and finance, as well as information about the condition itself.

Sure, the drive for a ‘cure’ and ‘better treatments’ for dementia  as a ‘key priority’ from the Alzheimer’s Society (their press release on the ‘G8 summit’) is a worthy and commendable one. However, individuals with dementia and the people who are close to them need to have realistic expectations about what the drugs can do – and what they can’t do.

There are invariably going to be pressures on English policy in dementia policy, and dementia itself has to compete with a finite pot of resources compared to other very important long term conditions (such as chronic obstructive airways disease).

In the absence of a magic cure for the more prevalent types of dementia, such as dementia of Alzheimer type, I believe a huge amount of effort morally must be put into improving the quality of life of those loved ones with dementia.

I particularly admire Beth Britton for her work in dementia. Beth on her blog produces a clear first-hand precious witness of her father, whose journey of vascular dementia was for around 19 years. I had the good fortune to meet Beth, Gill Phillips (the force behind the ‘Whose Shoes‘ tool) and Kate Swaffer recently when Kate was visiting from Oz. Kate’s blog on personal experiences of living with dementia is a candid tour de force. Both Beth and Kate have reasonable expectations from society of its reaction to people living with dementia. Their voices have to be heard clearly through the noise of the system.

These are examples of genuine people, who care. Their passion for explaining the importance of the person is authentic.  It’s real.

I am nearly 40, and I realised a few years ago that anything can happen to anybody at any time. This crisis of insight occurred precisely at the moment  when I woke up from a six week coma in a London NHS Trust, as I had contracted meningitis. It’s how I became physically disabled.

When I studied medicine for all of six years at Cambridge, and did my postgraduate studies in London,  I had never heard of Tom Kitwood. Kitwood was, however, remarkable for revolutionising the way we think about dementia.

Medics are transfixed on their medical model, but Kitwood put the person in pole position in dementia care. This is extremely potent, corroborated in subsequent policy from SCIE on personalisation and person-centred care. I have indeed devoted a whole chapter to it in my book ‘Living well with dementia’.

Policy makers owe a debt they can never actually repay from people with dementia (such as Norman McNamara) or people who have come up close with dementia (such as Tommy Whitelaw and his late Mum Joan, whom Tom clearly adored).

In a closely-knit group of #dementiachallengers,  @charbhardy is also “first amongst equals”!  As Charmaine’s Twitter profile says, she is a carer to her husband with ‘PPA’.

PPA is primary progressive aphasia, a rare type of dementia. All the dementias have specific needs.

Charmaine’s poppy is even on the front cover of my book, with kind permission of course!  You will see some striking pictures of sterling gardening when you visit her Twitter profile. The flowers at the top of this blogpost are hers.

My book completely rubbishes the view that nothing can be done to help individuals with dementia.  Quite the reverse.

A lot CAN be done; whether this is improving the design of the personal home, care home, or ward; improving the outside environments such as paving; improving adaptations and technologies for the home; improving advocacy for people with dementia and their carers; improving networks and social inclusivity (through even the social media); promoting dementia friends and dementia-friendly communities (even banks); encouraging debate (e.g. through Mr Darren Gormley’s excellent blog.)

Or it might include improving information for persons with dementia  or their carers. See for example Lee’s “Dementia Challengers” resource which shows ‘choice’ to be more than some minor policy whim; it’s a real thing which can help people to live successfully with dementia.

There is therefore a huge deal which could and should be done.

However, the system is like a giant oil-tanker where it’s really hard to change direction. Beth Britton’s blog is amazing – I can’t praise it highly enough. This, however, upset me about how Beth’s own father had been treated (from a blogpost of Beth from 6 November 2013, entitled “Does the world really stop?”):

I lost count of the young doctors who saw my dad during his 19 years with dementia and questioned the point of treating a man who a) had a terminal disease, b) was immobile (as dad was for many years), c) doubly incontinent, d) had a swallowing problem (for the last four years of his life) and e) apparently in their narrow-minded judgement, had no quality of life whatsoever.

And this was Sally‘s experience (from the Foreword from my book):

Dementia of Alzheimer type destroyed his brain so badly that my father was unable to feed himself, mobilise, or verbalise his needs. He became totally dependent on my mother 24/7. As the condition advanced, my father became increasingly frail, with recurrent chest infections due to aspiration from swallowing difficulties. Each time the GP would be called out, antibiotics prescribed, and so the cycle would begin again. As a nurse, I wanted to see proactive management of my father’s condition. The system locally, however, was quite unable to provide this service. I feel that the dementia of Alzheimer type is a terminal condition, and, as such, should be treated like other similar conditions in care models. What we instead experienced was a “reactive “system of care where the default option was admission to hospital into an environment where my father would quickly decline.

I am lucky as I work closely with international people of the highest calibre around the world; we have a real focus on trying to witness the quality of life resulting from policy, researching it, and doing something about any shortfalls.

Through my 11000 followers, I am hoping to take some people, from all parts of society, on this journey with me. ‘Dementia is everybody’s business’, as this excellent badge from Lucy Jane Marsters shows.

I hope very much you’ll be inspired by Beth, Gill, Kate, Lee, Lucy Jane, Norman, Sally, and Tommy and others to make dementia your concern too. It’s  the type of society we all have a stake in and we should not be afraid to learn from brilliant members of society who happen to live with dementia.

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