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Beyond the rhetoric
The highest standards in English dementia policy will not be achieved by political smoke and mirrors, where the rhetoric requires a unachievable leap with reality.
In this current term of parliament, where the aim should not have been plugging holes in the roof (the NHS deficits) but the aim should have been a rollout of a care system fit for purpose, social care is on its knees. It hasn’t been ringfenced since 2010, and on top of that national debt has concomitantly gone through the roof. The state of the national finances are in a parlour state.
Whilst the intention of the Labour Party had been to roll out ‘whole person care’, there was never any operational meat on the aspiration bones. People were left guessing whether personal unified budgets would remain optional, and how pooled budgets could be achieved such that the universal healthcare system could be bolted onto a means-tested social care system.
Social care has had its well published challenges. The rhetoric of key parts of the law in operation, including the Mental Capacity Act and Deprivation of Liberty Safeguards, has not occasionally been matched with the reality. There have even been high level problems as to whether our law is now consistent with European law.
In “dementia friendly communities”, we have the absurd situation of very few paid staff or consultants, living with dementia or carers, on the personnel of major charities in dementia. Invariably, speakers at the conference are the same, presenting the same unbalanced biased script on the purported successes of research and drug trials when the actual picture is far bleaker.
The success of ‘Dementia Friends’ has absolutely nothing to do with the number of friends achieved. One ‘friend’ is a success if that means that that friend knows more about dementia than he did previously. But likewise amassing friends through a quick online application is not really ‘mission accomplished’ by any stretch of the imagination.
There are too many talks I attend where speakers boast of ‘Dementia Friends’ as pitched as training. Under no stretch of the imagination, likewise, is Dementia Friends training. It is certainly no where nearly adequate for the purposes of providing care, and it is a sad testament to the lack of ability of some commissioners that they are totally unaware of this.
Clinical commissioning groups are nothing other accounting machines, budgeting, assessing and identifying risk in spending for populations. They are statutory insurance bodies, in place for the eventual privatisation of the NHS. It is no accident they’ve been introduced by Andrew Lansley who felt he had learnt lessons from the privatisation of the utilities. The major heavy lifting of breaking up the NHS into manageable parts which could be later transferred to private insurance, or sold, is not accidental.
The term ‘person centred care’ has been misused around the world, although there are brilliant examples of such care. Life stories are used as an administrative checklist exercise, without engaging in the real ethos of seeing the person’s identity. Activities, marketed as ‘meaningful’, are administered like drug rounds. Person centred care is supposedly delivered by staff who have not been treated in a person-centred way themselves, often, with breaches of the national minimum wage and insecure zero hour contracts.
The surge in dementia diagnosis rates is not a ‘result’ if so much effort is put into recoding possible dementia into primary care rather than diagnosing ‘real dementia’. We still have no idea how much of this dementia is actually mild cognitive impairment in reality, and we have set some people up for a fall, by telling them they have dementia when they haven’t. This is abhorrent and inexcusable. There have been nothing other than smoke and mirrors when any of us ask legitimate questions about extra funding for GPs to enable them to feel confident in diagnosing young onset dementia, often not heralded by memory problems, below the age of 65. There’s about 30,000 of them out of 850,000 currently in the UK.
Of course, this was of course masterfully masterminded by Big Charity, government and the media, who are superb at the rhetoric and less capable on the reality. This annually repackaged garbage has got to stop in England.
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Dementia friendly supermarket checkouts are offensive and should cease now
There are many burning issues in English dementia policy. One is mitigating against a high number of low quality and unreliable diagnoses of dementia due to poorly trained staff and inadequate resources in the system overall. Another is the poor coordination of care following diagnosis, due to the haphazard partial and inadequate roll out of anything appearing like integrated or whole person care.
The implementation of dementia friendly checkouts is yet another example of English policy having taken route which appears to have as its objective enhancing the brand profile of contributors from the voluntary sector, rather than genuinely enhancing the quality of life of people with dementia or carers. These are checkouts with huge banners with the word ‘dementia’, and literature from a particular source explaining about dementia.
How this situation has arisen is easy to explain relatively, however. In the name of ‘dementia awareness’, people have clearly abused the well meaning intention of ‘Dementia Friends’. Public education of dementia was desperately needed in the UK, is a global aspiration, and was indeed signposted in the 2009 English dementia policy document.
The 2009 English dementia policy document, the only five year strategy to date from the Department of Health, was published by the Department of Health. It was called ‘Living well with dementia’. There have been piecemeal policy documents annually, but it is recognised that the follow up to this five year strategy has not been published yet.
Unlike in cancer, there is no worked up care pathway. Cancer Research UK has made great strides in producing such a document for cancer. Cancer, like dementia, is an important long term condition where timely diagnosis, and encouraging people live to better is a priority. Cancer benefits from some effective medical and surgical treatments which not only have an effect on symptoms but on disease progression.
Justice delayed is justice denied. In cancer, it is well known that the provision of clinical specialist nurses have vastly improved the wellbeing of patients particularly in end of life care, such as from Marie Cure or Macmillan. There is no such provision of such nurses in dementia. Currently Admiral nurses, provided by Dementia UK, are finding it tough to get commissioned despite widespread demand. The lack of promotion of them in recent policy documents is not justified given the huge literature for them proving beneficial outcomes. They should be in the second English dementia strategy which has been delayed without any explanation. Justice delayed is justice denied.
The UK instead is focusing on ‘dementia friends’. How the number of Dementia Friends suddenly shot up from 700,000 to 1 million is a bit of a mystery, save for the fact that this increase in numbers happened to coincide with an online registration exercise. The danger of course was that people were using ‘Dementia Friends’ as a tickbox exercise merely.
Another indication that a tickbox mentality was being applied to ‘Dementia Friends’ was the large numbers of people, including commissioners notably, who kept on referring to the provision of information sessions as ‘training’. It is categorically stated in all official communications from the Alzheimer’s Society that it is not training. The policy reason for this is that nobody responsible wants to promote inadequate training for dementia care settings, where great strides have instead been made for example in the development of the ‘care certificate’.
The ‘Dementia Friendly’ checkout is striking in the context of the worldwide aims of dementia friendly communities. Supportive communities, howeverso defined, are meant to be inclusive and accessible to all. They are meant to be non stigmatising.
One of the aims of ‘Dementia Friends’ is indeed to see beyond the diagnosis. People are therefore not labelled by their diagnosis. It would be hard to conceive of a supermarket queue for ‘Learning difficulties’, ‘Depression’ or ‘First episode psychosis’.
When Mick Carmody or Kate Swaffer, both leading members of Dementia Alliance International (the only peer group of people living with dementia internationally and peak body), get told, “But you don’t look as if you’re living with dementia”, they have been known to respond, “That’s very interesting – but do tell me, what does a person living with dementia look like?”
It is actually very rare for someone with dementia to be living only with dementia. Co-morbidity is common. If you had dementia and depression, which queue would you join? The dementia friendly queue or the depression friendly queue?
When I was at the Alzheimer’s Disease International conference in Australia earlier this year, one of the speakers asked all people with dementia to stand up. Citizenship for people with human rights is a major drive for policy worldwide, and a principle aim of advocacy based on human rights is to protect people with dementia and carers against degrading treatment. This has been enshrined legally in some form or other since Roman times.
Asking people with dementia to stand up in a theatre is making a spectacle of people’s living in an undignified manner. Kate Swaffer, Co-Chair of Dementia Alliance International, even mentioned in her plenary speech how offensive it was.
It is highly unlikely that people living with dementia want to ‘out’ their diagnosis in a shopping queue, when many will be wanting to go about the life as normally as possible. Could you imagine the tannoy announcement, “Will all people with Alzheimer’s disease go to checkout number 9 please?”
As it happens, the vast majority of people living with dementia do not want to join that queue and hate the idea.
Dementia represents about 128 different conditions, depending on how you count them, ranging from Alzheimer’s disease at one end (very common) to anti-potassium antibodies paraneoplastic dementia (relatively rare). As dementia, a progressive condition affecting the brain, can in theory affect any of the thinking functions of the brain, in theory it is possible that any of the cognitive functions ranging from attention to higher order visual processing can be affected. So that is what could be in theory expected in a ‘dementia friendly checkout’.
It is hard to say why dementia friendly checkouts have been greeted with such enthusiasm. Certainly any reasonable leaders in the NHS should not associate themselves with such an unintelligent offensive policy. English dementia policy and their leaders should not be for the promotion of themselves at the expense of the wellbeing of people living with dementia or carers.
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Don’t mourn, but organise!
It’s claimed that the British trade union movement, in response to yet another battering of the left-of-centre political parties at the general election in 2015, produced the clarion call, ‘Don’t mourn, but organise!’ The saying, originally associated with the last words of a singer and activist called Joe Hill it is reported, has become synonymous with a severe defeat.
The diagnosis of dementia, imparted to a person and his or her friends and family, can be perceived as a severe defeat. With a relative lack of pure biomedical offerings for symptomatic treatment or cure, currently, or indeed drugs to halt progression of the disease, persons on receiving a diagnosis can be expected to commence an endure a prolonged period of a type of ‘mourning’. The expectation of packing up your day job or dissolution of friends of family can be overwhelming, if an alternative of reablement through the social model of disability is not even ‘on offer’. It is estimated that there are currently about 47 million people in the world living with dementia.
I often give ‘Dementia Friends‘ sessions to the general public. Such information sessions can lead you to bring into sharp focus your own thinking indeed. I was asked about the ‘diagnosis gap’ recently by a salaried GP from West London: this is the gap between potential diagnoses of dementia in the community, and the actual number of diagnoses given. This shortfall has had a number of reasons associated with it across the years, and English policy has tried to reduce this gap.
Chris Roberts was told his diagnosis of mixed dementia, Alzheimer’s disease and vascular dementia, a few years ago. His dementia is what is called a ‘young onset dementia’, as it presented before the age of 65. However, Chris had a history of emphysema, a disease of the lung which can produce shortness of breath and marked decrease in oxygen saturations. Such low oxygen (hypoxia) can indeed cause memory problems. Chris underwent a series of systematic tests before finally arriving at a diagnosis. That is why you always hear Chris about preparing to wait for a proper and correct diagnosis in a ‘worth the wait’ manner.
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Chris is passionate about educating others about dementia. He is in fact the Alzheimer’s Society regional ambassador for Wales, a contact for the Alzheimer’s Research UK, a ‘champion’ for Join Dementia Research, a delegate for Dementia Action Alliance, passionate about supporting Young Dementia UK, a Dementia Friends champion, amongst his main commitments. Such experience has been very recently recognised in his deserved appointment to the committee appointed by NICE (the National Institute for Clinical Excellence).
The basis for the doctor-patient relationship is based on trust and confidence. And yet the statistics surrounding how a diagnosis sometimes not being imparted are staggering. The whole ‘mix’ of reasons is complicated, including a reluctance by some not wanting to be given the diagnosis of dementia, but 37% of people with dementia in the UK do not receive a formal diagnosis, and the length of time you have to wait to receive a diagnosis varies hugely depending on where you live, from two weeks to over six months. For some time now, the Alzheimer’s Society has been doing its ‘Right to Know’ campaign.
In English policy, there have been correct concerns that accompanying the drive for diagnosis should be an equal sustained improvement in post-diagnostic care and support for a person with dementia. This might include a care coordinator, information sharing between care services, multi-disciplinary input as or when required (e.g. from a physiotherapist, speech or language therapist, occupational therapist, clinical psychologist, specialist nurse), enhanced healthcare across a diverse range of care settings (including at home, residential care homes, hospitals and hospices), better advanced care records and planning, better end of life care, and so on. Clinical nursing specialists have in particular a pivotal role in helping with coping strategies for carers, who very often find themselves under strain whilst doing valuable and rewarding work. And an optimal system must include dementia advisors and dementia support workers too.
Chris himself spoke briefly about this topic last year at the Alzheimer’s BRACE conference in Bristol.
Chris produced a brief ‘wish list’, which started with ‘joined up services’.
Here in a recent Care England/ITN debate, Beth Britton, well known campaigner and advocate in dementia care, says, “In my own experience, for my dad, integration simply did not exist.”
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The cuts in social care funding over the last few years have been devastating. Such cuts have had an impact on the delivery of NHS care, for example in delayed discharges from hospital, but it is clear that the social care profession need proper resources and time to care in itself.
The Alzheimer’s Society is currently looking at standards in post diagnostic care and support for dementia, and this will be an extremely welcome contribution to the narrative here in England. A substantial contribution has been made previously by the Care Quality Commission in their ‘Cracks in the pathway’ document, which, while celebrating outstanding care, did concede simultaneously that bad care did exist and could not be accepted. Often care faltered at discontinuities in the care system, notably.
Life experiences matter enormously, as through building up a picture of how people have lived beyond their diagnoses of dementia in the community is critical for us all to understand dementia. Wendy Mitchell never fails to amaze me in the sheer commitment she puts into her campaigning, which includes describing her experience of early onset Alzheimer’s disease, including through her blog ‘Which me am I today?‘. Alzheimer’s disease is the most common type of dementia worldwide, typically presenting with significant problems in learning, memory, navigation and/or attention. Wendy is passionate about promoting dementia research particularly. Wendy will indeed be discussing with Gavin Terry in policy from the Alzheimer’s Society the need for an effective post-diagnostic network next week in ‘NHS Expo’.
In the UK, there are some remarkable individuals who stand out also as leaders, living with dementia. I can think of immediately Hilary Doxford, who happens to be the delegate living with dementia for the World Dementia Council. Also, Ken Howard is an Alzheimer’s Society ambassador, and Dr Jennifer Bute (and who recently featured in BBC Radio 4’s “A doctor’s dementia“. I am also mindful of Agnes Houston MBE, living with dementia from Coatbridge, Scotland. Valerie Blumenthal also has been outstanding in sharing her experiences of what it’s like to live with a relatively rare type of dementia; and has just finished what I am sure is another excellent book. And these are just a few names from the UK; there are many more in Europe, and indeed next week’s Alzheimer Europe conference in Ljubljana, Slovenia, will allow time for many social and professional gatherings.
There is no doubt that huge strides have been made in ‘engagement’ and ’empowerment’ of people with dementia. I do not wish to underestimate this. But I do find the word ‘engagement’ as a term a bit limp; for example, I do not as such ‘engage’ as postman when I receive my post from and chat with him daily. You can’t “half believe” in equality or inclusivity, I feel. It has to be more than perceiving people living with dementia as ‘living with an illness’ in the strict medical model, and getting away from the ‘does he take sugar?’ mentality which can inadvertently rear its ugly head. I feel the next obvious advancement is to advance empowerment to a further level, and to have those people who want to, living with dementia, also leading on policy. Chris’ appointment to NICE and Hilary’s appointment to the World Dementia Council, while conceding that a few representatives for the millions with dementia are inadequate, have been the necessary first step in this process, I feel.
There are ways of not mourning but organising, through for example the European Persons with Dementia (chaired by Helga Rohra), or internationally through the Dementia Alliance International (chaired by Kate Swaffer). Therefore, if one truly believes in genuine equality, we should be jumping at the chance of equipping those people with dementia who want to with the leadership skills to promote authentic advocacy. This will meet with some resistance from others, I am sure, but this is essential if we are to go beyond ‘friendliness’ and cut into the icebergs that are stigma and discrimination.
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Dementia and ‘the numbers game’
In some ways, reporting on the dementia prevalence statistics – that is, how many people are thought to be living with one of the 130 or so dementias at this time – is like reporting on the official unemployment statistics. An eager audience can quickly observe whether the overall statistics appear to be going up or down, and why.
The usual shrill of ‘every unemployed person is a statistic that represents a personal tragedy’ has its parallel with the diagnosis of dementia. The diagnosis of dementia is a significant life event not only for the person considered after all the investigations and medical history to thought to have a dementia; but also a huge event for those closest to him or her.
Policy by spreadsheet inevitably is an inadequate affair. Public health doctors are continually reminded to treat the person, not the data point. Nonetheless, the recent review of the epidemiological evidence and implications for public health policy from Prof Carol Brayne and many colleagues elsewhere was, I feel, very helpful.
The overall position is this: dementia has numerous causes, and may not be totally preventable for the most part. People disagree on the whole on the contribution of non modifiable risk factors to your chance of being diagnosed with dementia.
Parking this aside, the possibility that low education and low social class might be contributory factors to dementia are potentially interesting. This inevitably produces the ‘what about?’ arguments – in this case, what about the famous and celebrated novelist Iris Murdoch who was very educated and still developed dementia?
That there are features in your environment which not only might be said to be preventative for dementia but also relevant to the quality of life for a person with dementia is important. The co-morbidity of certain medical conditions, such as high blood pressure or high cholesterol, is relevant; so is requesting a lifelong smoker to give up smoking.
Their overall conclusion is ‘the number of people with dementia in some western European countries is stabilising, despite population ageing.’ But I suspect that it will be rather difficult for this simple message to combat the ‘dementia time bomb’ moral panic headlines. Sensational dementia reporting, even if inaccurate or bordering on fraudulent, sells copy.
If the overall numbers of dementia are going down, that might mean it’s harder to raise funds for dementia. But I think this is wholly to do with how charities big and small wish to pitch their ‘retail offer’ to potential supporters – the charity might wish to put all their eggs in the cure basket, or might wish to be actively supporting those people aspiring to live better with dementia.
Focusing on the numbers game might mean hitting the target but missing the point. I suspect a massive danger of focusing on the ‘numbers game’ is that we’re far too uncritical in considering the ‘numbers of what?’ We know that mild cognitive impairment represents a condition, not all people living with it go on to develop dementia; but how we classify the two matters.
Also, I really don’t feel we have nearly enough clarity about the numbers of people living with young onset dementia, in other words dementia before the age of 65. There are far too many swathes of policy which can be overtly ageist in approach, and I don’t want epidemiology to be one of them. We need to know about the impact (and value) of people with younger onset dementia, around the world.
People living with young onset dementia often have employment and financial considerations, young families and other social networks which are thrown into disarray with the diagnosis of dementia. Presenting a message that the overall numbers of dementia appear to be ‘stabilising’ doesn’t do much for them; and may be actively misleading, particularly if it happens to be the case that, even accounting for total population, the numbers of people with young onset dementia appear to be increasing.
On the other hand, the ‘numbers game’ does provide us with a useful metric to think about the effect of public health interventions, but then again this is in the suite of another possible instruments, such as ICHOM or ‘the cognitive footprint’.
This is definitely what might call ‘work in progress’.
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Once bitten, twice shy? No – we should remain cheerful about dementia research.
The idiom “Once bitten, twice shy” is well known to all of us: “When something or someone has hurt you once, you tend to avoid that thing or person. ”
There are 47 million people living in the world with dementia.
Alzheimer’s disease is the most common cause of dementia around the world. It inevitably takes up the ‘lion’s share’ of interest, but it’s important to note that there are many other people living with other types of dementia, for example, frontotemporal dementia, we have to meet the needs of as well.
Let me lay my cards on the table.
I think it’s possible to create an environment such that people living with various dementias can be at their best, whether in work or not. I feel the emphasis must be on acknowledging dementia as a disability; and, from this, arises a mature conversation about reablement and rehabilitation.
But likewise I don’t think we should be subsumed with previous failures in neuropharmacology for us to ‘give up’ on medications which might ‘stabilise’ any underlying disease processes in dementia. I don’t think we should subject them to hyperbole either, but when there are glimpses of hope we should not be in the business of extinguishing hope.
I think one of my greatest privileges of all time was a chance to sit next to César Milstein at dinner in Cambridge.
The story of monoclonal antibodies is also well known.
Monoclonal antibodies were pivotal in medically treating a person who’d contracted Ebola.
Monoclonal antibodies are proteins that recognise and fight “aliens”, such as bacteria or viruses. Since the early twentieth century scientists had been keen to produce large amounts of antibodies specific to a particular target for research or clinical purpose, but with no success.
However, in 1975 César Milstein and his colleague Georges Köhler at the MRC Laboratory of Molecular Biology in Cambridge developed a way to produce monoclonal antibodies by fusing myeloma cells — a type of cancerous immune cell — with mouse spleen cells that had been exposed to a target. As well as creating a research tool for investigating the immune system and the pathways of disease, this innovative research also laid the foundations for the production of antibody-based drugs against specific diseases.
But this initial success has inevitably caused others to raise their game.
First identified by Alois Alzheimer in 1906, Alzheimer’s disease is an irreversible, progressive brain disease that slowly destroys memory and cognitive skills (Alzheimer, 1096).
Accumulation of Aβ (“beta-amyloid”)in the brain, manifesting as β-sheet rich plaques, is a hallmark of Alzheimer’s disease. Attacking amyloid plaques in symptomatic patients is sometimes referred to as ‘too little, too late’. (However, it has also been suggested that plaques may be the body’s way of sequestering the toxic Aβ oligomers.)
I first became interested in amyloid because of its effects all over the body, but its effects in the brain are extremely noteworthy.
Eli Lilly & Co.’s drug solanezumab, and bapineuzumab – a drug developed jointly by Pfizer Inc., Johnson & Johnson and Elan Corp. – had also targeted amyloid plaques.
The prediction that “immunotherapies” targeting soluble Aβ oligomers will elicit clinical benefit is supported by studies of human Aβ autoantibodies, of which only a subset appears to be ‘disease-protective’ (in particular, the subset that preferentially recognizes Aβ oligomers) (see papers by Dodel et al., 2011; Moir et al., 2005).
Thus, immunotherapeutics with high selectivity for soluble Aβ oligomers, which resemble these protective auto-antibodies, might be expected to deliver a clinical advantage compared with the non-selective immunotherapies in clinical development?
One important caveat when considering the activity of Aβ assemblies is the dynamic nature of the aggregation process.
Initial studies clearly demonstrated that aggregation of Aβ was essential for toxicity, but characterisation of the assemblies used was limited and it was assumed that, because amyloid fibrils were detectable, it was fibrils that mediated the observed toxicity.
Yet, this appeared inconsistent with a finding that there might be actually a relatively weak correlation between the severity of dementia and the density of fibrillar amyloid (Terry et al., 1991).
In contrast, robust correlations between the levels of soluble Aβ and the extent of synaptic loss and severity of cognitive impairment have been fairly consistently demonstrated (e.g. Lue et al., 1999; McLean et al., 1999) – the term soluble Aβ refers to all forms of Aβ that remain in aqueous solution following high speed centrifugation of brain extracts.
It has been critical, some argue, to re-ignite the interest in finding a pharmacological means of stabilising dementia of the Alzheimer type, in light of recent clinical failures of several high-profile experimental therapeutics for dementia of the Alzheimer type, and the high risks and costs of such development endeavours.
The work of Dr Dennis Gillings and colleagues at the World Dementia Council has definitely kept a show on a road.
The recent clinical failures also have intensified scrutiny of the ‘amyloid cascade hypothesis’, which spawned many of the recent experimental drugs for dementia of the Alzheimer type, targeting the amyloid-beta (Aβ) peptide.
Nevertheless, the causal linkage between Aβ and dementia of the Alzheimer type appears to remain strong and appears to be supported by numerous different studies spanning the past two decades (e.g. Ferreira and Klein, 2011).
Let me know turn to BiiB037, which is Aducanumab.
I think there is cause to be extremely cheerful about this novel agent, though we need to be cautious: once bitten, twice shy.
Aducanumab is a human IgG1 monoclonal antibody derived from a patient with AD by using reverse translational medicine methodology (the background to this is described here in “World Intellectual Property Organization International Publication Number WO 2008/081008 A1″). The overall rationale was that these donors’ immune systems had successfully resisted Alzheimer’s disease and that the operative antibodies could be turned into therapeutics by a process called “reverse translational medicine”: these agents target ‘neb-epitopes’ in the jargon.
A Phase 1 safety and pharmacokinetics study began with a single-ascending-dose trial of 0.3 mg/kg to 30 mg/kg intravenous BIIB037 in 56 people with “mild to moderate dementia of the Alzheimer type”. Participants were assessed at 10 time points up to two years after dosing.
It seems that, according to the available data, BiiB037 binds soluble Aβ oligomers and fibrillar Aβ with high affinity and binds monomeric Aβ with low affinity.
But the next stage of the drug development process inevitably has to turn to safety and efficacy, and I am positive that Biogen will be open in discussing their data with peers in due course.
Amyloid-related imaging abnormalities (ARIAs) have been reported in clinical trials of monoclonal antibodies in the dementia of the Alzheimer type.
Concerns raised by the US Food and Drug Administration regarding MRI abnormalities observed associated with amyloid-modifying therapy in patients with the dementia of the Alzheimer type prompted the Alzheimer’s Association to convene a work group (Sperling et al., 2011).
The work group coined the phrase ARIA (amyloid-related imaging abnormalities) to describe a spectrum of MRI findings that include sulcal effusion and parenchymal edema (ARIA-E) and haemosiderin deposition (ARIA-H). Specifically, ARIA-H refers to areas of hypointensity on gradient echo MRI that are believed to represent deposits of iron in the form of haemosiderin.
Animal models currently appear to indicate that anti-amyloid β treatment removes vascular amyloid with a corresponding compromise of the integrity of the vascular wall and leakage of blood resulting in microhaemorrhages and haemosiderin deposition (Zago et al., 2013).
The aetiology of ARIA remains unclear but the prevailing data support vascular amyloid as a common pathophysiological mechanism leading to increased vascular permeability. In the phase 2 bapineuzumab trial, dose-related vasogenic oedema (ARIA-E) had been observed (Salloway et al., 2009). Twelve cases of vasogenic oedema were reported, all in treated patients, and all resolved over time. But it seems that ARIA does not seem to be associated with all monoclonal antibodies?
As reported elsewhere, PRIME is an ongoing Phase 1b randomised, double-blind, placebo-controlled, multiple-dose study evaluating the safety, tolerability, pharmacokinetics and pharmacodynamics of aducanumab in patients with prodromal or mild AD.
This interim analysis of PRIME reflects data for 166 patients, up to week 54 in the placebo (n=40), 1 mg/kg (n=31), 3 mg/kg (n=33) and 10 mg/kg (n=32) dose arms, and up to week 30 data for the 6 mg/kg (n=30) dose arm.
On March 20 2015, it was reported that:
“CAMBRIDGE, Mass.–(BUSINESS WIRE)–Today Biogen Idec (NASDAQ:BIIB) announced data from a pre-specified interim analysis of PRIME, the Phase 1b study of aducanumab (BIIB037), in which aducanumab demonstrated an acceptable safety profile and positive results on radiologic and clinical measurements in patients with prodromal or mild Alzheimer’s disease (AD). These data are being presented today at the 12th International Conference on Alzheimer’s and Parkinson’s Diseases and Related Neurological Disorders in Nice, France.
Treatment with aducanumab produced a dose- and time-dependent reduction of amyloid plaque in the brain. Amyloid plaque is believed to play a key role in the development of the symptoms of AD. In exploratory analyses, a dose-dependent, statistically significant effect of slowing clinical decline was observed on the Mini Mental State Examination (MMSE) and Clinical Dementia Rating (CDR) scales.”
The safety observations are particularly interesting.
“Aducanumab demonstrated an acceptable safety and tolerability profile in this analysis. The most frequently reported treatment-related serious adverse event (SAE) and adverse event (AE) was ARIA (amyloid-related imaging abnormalities). Based on MRI scans, the incidence of ARIA-E (edema) was dose- and apolipoprotein E4-(ApoE4) status-dependent. In general, the onset of ARIA-E was observed early in the course of treatment and was asymptomatic or with mild, transient symptoms. The majority of patients with ARIA-E continued treatment and did so at a lower dose.”
It will be helpful if there is more research into characterising ARIA.
I was struck by one line in the abstract of the paper by Zago and colleagues (2013), in particular:
“These data suggest that vascular leakage events, such as microhemorrhage, may be related to the removal of vascular Aβ. With continued treatment, this initial susceptibility period is followed by restoration of vascular morphology and reduced vulnerability to further vascular leakage events. The data collectively suggested a vascular amyloid clearance model of ARIA, which accounts for the currently known risk factors for the incidence of ARIA in clinical studies.”
All of this makes you wonder whether we are to be cheerful or cautious?
I think both, and I keep reminding myself that we have come an extremely long way.
Reason to be cautious? Yes. Reason to be cheerful? As long as we don’t neglect the 47 million people living in the world with dementia, yes.
Selected readings
Alzheimer A. Über einen eigenartigen schweren Erkrankungsprozeß der Hirnrinde. Neurologisches Zentralblatt. 1906;23:1129–36.
Dodel R, Balakrishnan K, Keyvani K, Deuster O, Neff F, Andrei-Selmer L-C, Röskam S, Stüer C, Al-Abed Y, Noelker C, Balzer-Geldsetzer M, Oertel W, Du Y, Bacher M. Naturally occurring autoantibodies against β-amyloid: investigating their role in transgenic animal and in vitro models of Alzheimer’s disease. J Neurosci. 2011;31:5847–5854.
Ferreira ST, Klein WL. The Aβ oligomer hypothesis for synapse failure and memory loss in Alzheimer’s disease. Neurobiol Learn Mem. 2011;96:529–543.
Lue LF, Kuo YM, Roher AE, Brachova L, Shen Y, Sue L, Beach T, Kurth JH, Rydel RE, Rogers J. Soluble amyloid beta peptide concentration as a predictor of synaptic change in Alzheimer’s disease. Am J Pathol. 1999;155:853–62.
McLean CA, Cherny RA, Fraser FW, Fuller SJ, Smith MJ, Beyreuther K, Bush AI, Masters CL. Soluble pool of Abeta amyloid as a determinant of severity of neurodegeneration in Alzheimer’s disease. Ann Neurol. 1999;46:860–6.
Moir RD, Tseitlin KA, Soscia S, Hyman BT, Irizarry MC, Tanzi RE. Autoantibodies to redox-modified oligomeric Aβ are attenuated in the plasma of Alzheimer’s disease patients. J Biol Chem. 2005;280:17458–17463.
Salloway S, Sperling R, Gilman S, Fox NC, Blennow K, Raskind M, Sabbagh M, Honig LS, Doody R, van Dyck CH, Mulnard R, Barakos J, Gregg KM, Liu E, Lieberburg I, Schenk D, Black R, Grundman M. Bapineuzumab 201 Clinical Trial Investigators. A phase 2 multiple ascending dose trial of bapineuzumab in mild to moderate Alzheimer disease. Neurology. 2009;5:2061–2070.
Sperling RA, Jack CR, Black SE, Frosch MP, Greenberg SM, Hyman BT, Scheltens P, Carrillo MC, Thies W, Bednar MM, Black RS, Brashear HR, Grundman M, Siemers ER, Feldman HH, Schindler RJ. Amyloid-related imaging abnormalities in amyloid-modifying therapeutic trials: recommendations from the Alzheimer’s Association Research Roundtable Workgroup. Alzheimers Dement. 2011;5:367–385.
Terry RD, Masliah E, Salmon DP, Butters N, DeTeresa R, Hill R, Hansen LA, Katzman R. Physical basis of cognitive alterations in Alzheimer’s disease: synapse loss is the major correlate of cognitive impairment. Ann Neurol. 1991;30:572–80.
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Do we need ‘intelligent transparency’ in the English dementia policy?
The Secretary of State’s speech given in the King’s Fund had distinct twangs of ‘déjà vu’ for me.
There are six subtexts to Jeremy’s speech which immediately raise alarm bells for me in English dementia policy.
Allow me for a moment briefly to tell you what they are.
Jeremy Hunt, Secretary of State for Health, yesterday said at the King’s Fund:
“With 40,000 health apps now on iTunes, these innovations are coming sooner than most people realise. The future is here, but it needs to be more evenly distributed. Heart rates and blood pressure will no longer be simply a matter for the doctor – patients will know them and monitor them too. Data sharing between doctor and patient means power sharing too. Intelligent transparency creates intelligent patients with healthier outcomes. Get this right and it is no exaggeration to say that the impact will be as profound for humanity in the next decade as the internet has been in the last.”
The full text of Jeremy’s speech “Making healthcare more human” is here. Please check against actual delivery.
This immediately brought back flashbacks of a document recently produced by the leading global management consultants, Oliver Wyman, called “The Patent-Consumer Revolution”, with main authors Tom Main and Adrian Slywotzky.
Note point number 1 – “consumer power” is back.
The subtitle of that Oliver Wyman document is in fact, “HOW HIGH TECH, TRANSPARENT MARKETPLACES, AND CONSUMER POWER ARE TRANSFORMING U.S. HEALTHCARE”
I went in fact to the launch of this document in Baker Street.
I, in fact, quizzed one of the Partners how ‘transparent’ markets can – in reality – be.
Markets can be notorious for having hidden sources of division, such as taxes and tariffs. Also, they can be legislated for to have lack of transparency as a factor which give them competitive advantage. Take for example a failing private provider which hides behind a veil meaning that you cannot get it at its staffing numbers due to ‘freedom of information laws’. The current Secretary of State has never been in a hurry to iron out this anomaly in the English law which directly affects patient (or ‘user’) quality.
Jeremy remarks,
“If intelligent transparency is Patient Power 1.0, this is Patient Power 2.0. We have the chance to make NHS patients the most powerful patients in the world – and we should leap at the opportunity.”
Oliver Wyman is much more brash in its use of “2.0” in talking about ‘consumer markets’.
“But in fact the tech attack is far more. It is both the symptom and driver of a much larger and more significant change sweeping through U.S. healthcare. The consumer tech companies are making valuable contributions, but they are making them in the context of a fundamental redrawing of industry lines that puts the consumer in charge and sets the foundation for Health Market 2.0. The tech entrepreneur developing a new app may not realize it, but he is helping to create the infrastructure of a new, more powerful way of delivering healthcare. The consumer who loads it on her smartphone just because it’s cool is contributing in a tiny way to a cultural shift that is changing the way we think about health.”
And this matters because Oliver Wyman’s thesis is much more wide-ranging. It could have a profound impact on the way in which the medical ‘side’ of dementia policy is carried out.
Take for example the vision of Oliver Wyman management consultancy on the growth of the Apple app.
“And remember, many life-preserving and life-enhancing activities don’t actually require the intervention of doctors. Could a company like Apple persuade a substantial number of consumers to open up their medical records, share their biometric data, and treat their iPhones as their main point of contact with care, then it persuade them it’s fun and cool? In many ways that sounds like Health Market 2.0 in a nutshell. In a few years, consumers will look back and realize how antiquated the medical system used to be: Measure a handful of numbers (HDL, LDL, triglycerides, glucose, A1c) every 12 to 18 months, hear a few admonitions about diet and exercise, and forget them without any follow-up or coaching. Is that really how we did things? Why didn’t we think to demand more?”
Note point number 2 – “prevention” in public health creates new markets. Kerrrchhinngg!
If such ‘apps’ became widespread in the NHS, would taxpayers’ money be used to develop them? And, if so, would such innovations have commercial viability? For a NHS to be free at the point of use, there’d be ideological objection to the NHS charging for such apps, but it could be argued that the NHS could use charging for apps as a source of income generation. In the past, any element of introducing income generation has been interpreted as rationing services or producing a ‘two tier approach’, where you get an enhanced service if you can pay for it.
Would there be room for such apps in dementia?
In theory yes.
Risk factors for the vascular dementias include the usual risk factors for cardiovascular disease, e.g. ‘bad diet’, high blood pressure, uncontrolled blood sugar if diabetic, etc.
If you had non-invasive ways of measuring your blood sugar via your smart watch (say you were diabetic), or you were collecting information about your blood pressure all the time, you could have all your data uploaded into a giant computer. Such computer could look at your metrics as “Big Data”, as a corporate service to the NHS, and then ‘calculate’ your ‘risk’ of progressing onto a vascular dementia. And provided the NHS paid for this ‘middle man’, in theory you could be offering a higher ‘value’ NHS.
Or alternatively, you could be being fed a load of junk. At the moment, there’s no way of telling whether an app is actually making a positive difference to health, or merely feeding you a load of mumbo jumbo.
The sting in the tail comes from one sentence buried away in the Oliver Wyman report.
This leads smoothly onto the ‘big one’.
Point 3. English dementia care can be, theoretically, outsourced abroad to make it cheaper, while ‘adding value’.
Oliver Wyman asserts that: “The cornerstone of traditional medicine is the idea that all healthcare is local. ”
The argument goes like this.
If you could outsource diagnostic services, say send digitised MRI scans to a cheaper diagnostic unit in India or Taiwan, then the cost of running them will be cheaper. This will be useful for exerting budgetary control over the NHS budget. In fact, the ideal would be to do away altogether with hospitals, and just have a supply chain of bits of the system being done most cheaply, e.g. low-cost diagnostic workers ‘reading scans’ not specialist neuroradiologists.
This is disruption ‘at its best’.
Point 4. The argument for outsourced dementia privatised medical healthcare can be made by rubbishing the NHS subtlely.
On Twitter yesterday there was a joke doing the rounds along the lines of: “Mrs Hunt: “What would you like for breakfast Jeremy?” Mr Hunt: “Mid Staffs”.” hashtag #r4today.
That might also be the Jeremy Hunt answer to whether India or Taiwan, being an outsourced industry, would be any more unsafe. Hunt can attempt to argue that international jurisdictions haven’t inferior safety standards, particularly if Morecambe Bay or Mid Staffs are not ‘isolated incidents’. Throwing sunshine as a disinfectant into bad parts of the NHS are doing potentially makes it easier to argue that somebody other than the NHS can ‘do it better’?
And ‘doing it better’, in theory should be the function of effective management of performance in NHS institutions. Hospitals should want to improve the quality of their services first internally, rather than getting the regulator to do all the work. Such financial incentives for this to happen in the system must be ironed out in dementia policy. It’s what Roy Lilley calls ‘too much time weighing the pig, rather than fattening the pig’. We must all be concerned, in fact, if improvement comes from the regulator not HR, or in fact “NHS Improvement” is in fact a hybrid regulator – new jointly-led Monitor and TDA.
The advantage of process mapping each part of the supply chain is that it becomes easier to fragment the delivery of care, disposing of continuity of care to some extent, such that services are much easier to sell off and privatise.
The theme of ‘intelligent transparency’ was expanded in a number of areas by the Secretary of State, including how data could be used to identify problem areas in patient safety. The unfortunate aspect of having so many metrics of patient safety is that clinical commissioning groups are bamboozled as to which metric represents the most accurate measure of a particular organisation.
But patient safety in dementia policy does indeed bridge a number of areas – Jeremy mentions one of them in his speech, the quality of care homes. With the majority of people with more advanced dementia choosing to live at homes, rather than in a residential home, there has to be some sort of measure of the quality of home-help too. Ideally, unpaid carers need reassurance that they are meeting an appropriate standard of care, without having such standards as a stick to beat them with.
Point 5. ‘Intelligent transparency’ should apply also, say, the sheer volume of potentially incorrect diagnoses being currently chucked out by the English NHS.
Patient safety, however, is more than that in dementia policy. For example, there’s never been a proper analysis of the ‘safety’ of the diagnosis of dementia. In other words, how reliable is the diagnosis that people are receiving from the NHS? For ‘intelligent transparency’ to work here, we need some sort of information about how diagnoses are made as ‘dementia’, say to reach national ambitions, which later turn out not to be dementia, such as minor cognitive impairment or depression? Such misdiagnoses, which can happen not as a mistake but because circumstances change, matter hugely not least for the patient.
Point 6. Competition is ‘back’.
Jeremy Hunt has never really got into the debate about whether competition drives up quality. This remnant from the Alan Milburn era, which became turbo-boosted in the notorious section 75 clause of the Health and Social Care Act [2012], gives ‘competition’ huge ideological importance. The main purpose of introducing competition is that introduces private markets; and if this is coupled with ‘radical change’, Hunt is able to give it some degree of urgency.
Take for example this section of his speech:
“Self-directed improvement is the most powerful force unleashed by intelligent transparency: if you help people understand how they are doing against their peers and where they need to improve, in most cases that is exactly what they do. A combination of natural competitiveness and desire to do the best for patients mean rapid change – without a target in sight.”
Most people feel intuitively that competition is not actually the determining factor to improve post-diagnostic services in dementia, however so defined, but collaboration perhaps is; or even a combination of competition and collaboration, called ‘co-epetition’.
In the same way, we all want to outperform each other with our Apple Watch apps, we all naturally want to be the person in the village with the lowest risk for vascular dementia – or something like that.
So do we need ‘intelligent transparency’ in the English dementia policy?
Ironically, I do we do feel some sort of ‘intelligent transparency’ in dementia policy, but not for the reasons Hunt describes.
I think we should open up private providers, increasingly a ‘factor’ in both the NHS and social care, to the same freedom of information requirements, particularly if we are to ‘liberalise’ all parts of the market to an ‘equal playing field’.
I think NHS England should provide metrics about the volume of misdiagnoses in English dementia policy currently. A more intelligent way of constructing English dementia policy would have been to ensure that GPs had the skills, training and resources to diagnose dementia more accurately? Otherwise, we truly are running the risk of a high volume low quality approach.
We should be asking the right types of questions. I think there’s lots of excellent work being done by dementia advisors and dementia support workers. But if we’re to look at information, we should also be willing to look at whether dementia advisors or clinical specialist nurses are most likely to deliver a principal NHS outcome of reducing avoidable hospital admissions? Such data are actually vital for commissioning decisions.
Yes – it’s all a bit ‘motherhood and apple pie’.
It’s hard to oppose violently something which is ‘intelligent’ or ‘transparent’.
That is, unless of course the marketing gloss can be removed easily, rather, to reveal something which is inherently unintelligent and opaque.
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A sense of urgency in world dementia policy?
“Urgency” is defined in the Oxford English Dictionary as “importance requiring swift action”. But there is also a motto: “less haste more speed”. Or even, “slowly, slowly, catch your monkey”.
The 47 million or so people living with dementia, I feel, deserve better.
It might seem attractive to summarise the whole motherhood and apple pie approach with: “care for today, and cure for tomorrow.” And, indeed, prevention of the dementias is big business also too. But this is at risk of neglecting the concerns and expectations of people currently living with dementia.
People with dementia don’t form a ‘homogeneous’ group – not least because they are so many of them. Like any group of individuals, ranging from athletes to taxi-drivers, they all have different backgrounds, communities and expectations about the future. Notwithstanding that, it’s essential to listen to them.
The way in which you do this is, arguably, not through single people on large panels with diverse agendas. People living with dementia who can organise their own social movement are able to advance their own agenda. This might conflict potentially with the agenda of ‘others’. These ‘others’ may indeed have been people who have traditionally been thought to speak on behalf of people with dementia: like doctors, academics, carers or even politicians.
The sense of urgency for people with dementia to take their stories onto the world stage has never, in fact, been greater. This is in, no sense, a “false urgency”. In other words, this crisis has not been fabricated out of nowhere. But one cannot be blasé about what this crisis is. It’s the issue that there are 47 million people in the world who have ultimately received a diagnosis of dementia. They are actual people, with friends and family, who have their own needs. Many of these needs remain ‘unmet’.
Sometimes the diagnosis is given brilliantly. Sometimes it’s not. Chris Roberts, living with a mixed vascular and Alzheimer’s dementia in Wales, describes how he was given his diagnosis in a loud office one afternoon, and there suddenly came a knock on the door with someone peering round and saying “Can you hurry up please?” A diagnosis of dementia is in effect given to the person with the dementia, but also his or her surrounding network. That person therefore needs to be ‘prepared’ for the diagnosis, and be supported after the diagnosis.
It has become traditional for the crisis to be couched in purely economic terms. And this added ‘cost’ becomes a ‘colossal burden’ and the such-like, and invariably accompanied by loaded terminology such as “tidal wave” and “tsunami”. This ‘shock doctrine’ is nothing new. Naomi Kline discusses the phenomenon brilliantly how ideology has been triumphantly forced upon people in the wake of ‘shocks’ such as Hurricane Tsunami or ‘the War on Terror’. Politically, everyone likes an ‘enemy’, and enemies come and go (such as the currently tirade against ‘benefit scroungers’ in the United Kingdom). But framing people with dementia as a ‘cost’ or ‘burden’ is to ignore totally their value.
To give you an example, I was once chatting to someone over lunch at the Healthy Living Club in Southwark, London. He was telling me how he’d come from South America several decades ago as a cleaner. He is now living with early Alzheimer’s disease. This is probably the most common cause of dementia in the world, and in the United Kingdom, and it’s often heralded with changes in learning and short term memory. And yet his memory for the 1950s was immaculate. He went onto tell me his experiences from the 1950s, and how he had felt welcomed to England as an immigrant.
It’s no mean feat to have had charities lobby national governments to get dementia onto the world stage. The G8 dementia event was a remarkable success; and so were the legacy events. But many of us were left wondering what the precise ‘shock’ was. The shock appeared to be that there is no ‘cure’ for dementia still.
Wait a second. Is this really a shock? Is there really a cure for ‘the common cold’? Probably some of these common colds are caused by rhinoviruses, but one could easily decide that it’s not worth a mass inoculation program against this common cold because of resource implications.
The most common neurological presentation is headache. And yet it is completely unfeasible that a general practitioner in primary care would order a brain scan immediately for every cause of headache. Of course, there are some urgent causes of headache which would require immediate action, but that is different.
Take another symptom – the wheeze. Would a respiratory physician embark upon a CT scan of the chest with every example of wheeze? A wheeze will commonly require symptomatic treatment in primary care, for example from a ‘blue puffer’ (the salbutamol inhaler).
A cure for dementia might be promised by a concordat of governments by 2025, but in all honesty is a tall order. A cure for dementia does, in my opinion, though serve a very useful function – in giving hope. Hope is not to be discouraged in public policy in dementia at all. One can compare, perhaps, dementia to cancer. There may be about 100 different causes of dementia, as there are many different causes of cancer. Certainly, dementia does attract similar stigma to how cancer used to (“the big C”).
Cures for cancer are different. A brain tumour might be surgically removed. A cancerous growth in the breast or lung might be subject to medical or surgical therapy. But the major issue here is that there has never been one big ‘cure for cancer’. I suspect likewise there will never be one ‘big cure’ for dementia. For example, a few weeks ago, there was great news about the possible application of immunotherapy to treat malignant melanoma. Malignant melanoma is one, important, type of cancer; in the same way that a rapidly progressive Creutzfeld Jacob disease is one type of dementia.
Raising funds for research must have this degree of transparency. People should know what exactly they’re raising funds for. We could do with much greater funds for dementia (at all), compared to other conditions, say cancer. Dementia doesn’t attract this level of funding. And the funding for dementia cannot morally, I believe, be simply for drug discovery, whether that be for symptomatic treatment or an outright cure. Some of these funds must be allocated into what better dementia care might be, or how best to promote living better with dementia.
Talk to anyone living with dementia, and he or she will tell you that they don’t want to wait til 2025 for something to happen. Richard Taylor Ph.D., living with probable Alzheimer’s disease, once joked what significance 2020 might bring. Are we to get suddenly excited that we are about to discover a cure for dementia? Let’s face it the “cure for dementia” Pharma invariably talks about is really a cure for Alzheimer’s disease. Possibly, however, what is discovered in finding a cure for Alzheimer’s disease will end up being useful for other dementias such as frontotemporal dementia, some of them have very different molecular biology footprints such as diffuse Lewy body disease.
So, the sense of urgency created in the world events, with prominent leaders of Big Charity and government, was a vicarious one on behalf of Big Pharma. It is well known that Big Pharma have found it difficult to keep up momentum for research and development of ‘drugs for dementia’, when the track record has been so poor. Currently, in the UK there are few licensed drugs for dementia, and they do not slow progression of disease. While some who have experienced these drugs (directly or not), have described substantial effects, it’s readily conceded by many that these drugs do not normally have an effect lasting more than a few months.
It’s widely pointed out by some that the recent NHS reforms in England around 2012 probably cost about £3bn, and generated much anxst for staff within the health service. There is a very important rewiring of health and care services yet to be done. The political appetite for making a big deal of this change is zilch, and yet all main parties in England know it has to come at some time. The current Conservative Government in the UK, due to run from 2015-20, have pledged to develop activities within the “Better Care Fund”. The official Labour opposition party had wished to implement “whole person care”. It is recognised that the last thing the NHS would apparently need at the moment is a massive ‘top down reorganisation’. This is why many people refer to the need for an organic ‘bottom up reorganisation’.
One can quickly see how the ‘crisis’ in dementia has many ‘faces’. For example, many acute admissions in England are of elderly adults living with dementia. As such, many are not admitted with ‘an acute exacerbation of dementia’, in the same way one might be admitted with ‘an acute exacerbation of asthma’ or ‘an acute exacerbation of multiple sclerosis’. The system is clearly not functioning well if, once people with dementia have had a medical crisis seen to (such as acute pneumonia), they are left languishing in hospital because they cannot be discharged in a timely manner.
Also there’s a crisis which is entirely of the medical profession’s making. That is, the “selling” of the model that ‘we, Doctors, can diagnose your dementia, give you a drug for your symptoms, and possibly even arrest the development of your dementia”. I am proud to be regulated by the medical profession, so I’ll be the first to support my colleagues who are doing great work everyday. Some of them are even good friends of mine. But the medical model is profoundly bust.
That is, the drugs aren’t great. Some of the drugs even make things worse (certain types of drugs go down really badly in people with certain types of dementia). I said earlier that hope is a good thing. False hope, though, I strongly feel, is a bad thing. Not content with the relative lack of success of drugs for dementia in the last few decades, you can palpably feel the attention switching by Big Pharma to ‘new markets’. It is good marketing that will see the notion of ‘pre dementia’ win. That is, ”pre-dementia” is an idea that people with dementia go through an asymptomatic phase first for ages; and it’s in this time window one might be able to have good impact. This of course is a terrific idea IF such a phase were easily identifiable. Currently, despite huge amounts of effort with ‘biomarkers’, this phase has not been easily identifiable.
“Pre-dementia” might be biologically plausible in vascular dementia. Here, somebody with a high cholesterol, if the evidence points that way, might enter a dialogue with his or her own doctor about possibly a statin to reduce the risk of developing dementia. And this for the doctor might be a ‘quick fix’ – being seen to do something, in that attending a ‘Dementia Friends’ session might convince you you’ve had some sort of “training” in dementia even though you have simply attended one 45 minute information session.
A real crisis is that this is diverting scarce resources towards drugs where a fraction of the money could make a massive quality of life to people with dementia though other means. The “Alive Inside” film was a real eye-opener for many, inspirational in showing that many people living with dementia could ‘come alive’ at the sounds of familiar music.
The accusation is that this type of ‘intervention’, with a mp3 player, is simply a ‘gimmick’ and waste of money. The accusation that there is not a huge evidence base for such interventions makes me angry, as there has been a concerted effort across a number of decades not to invest in such research. And yet against all the odds, Jörn-Henrik Jacobsen, Johannes Stelzer, Thomas Hans Fritz, Gael Chételat, Renaud La Joie, and Robert Turner published a paper in June 2015 explaining how parts of the brain which were relatively unaffected in advanced Alzheimer’s disease happened to be parts of the brain which could be involved in the perception of musical memories.
So the true crisis is unfolding. The resources may be being spent in the wrong place. And also resources which could be used to improve people’s quality of life are not being spent. It is worth pausing for a moment how this ridiculous situation has come about. There has been an assumption that politicians, members of the medical profession, Big Pharma and Big Charity are all acting in the “best interests” of people living with dementia. And there’s no doubt for me that people within the medical profession, Big Pharma and Big Charity are all capable to providing ‘small gains’ in helping people with dementia, if that’s a single leaflet explaining what Alzheimer’s disease is, if that’s a drug that can help for a bit, or if that’s identifying the type of dementia accurately so that appropriate medical care can be anticipated.
The social movement from people living with dementia is about to hit policy like a ‘tidal wave’ of its own. Be scared. Be very scared. Such a movement has organised itself, in the form of the Dementia Alliance International, and is growing in presence. It is effective as a peer group, offering much support to one another. It is also effective as a campaigning group, getting the concerns of people living with dementia onto the world stage. Reams and reams have been written on social movements, even including within the NHS. I believe that many people fixate onto the turning of ‘communication’ into action without first spending time to articulate the actual problem first.
And here’s the precise problem. The current global policy is for the benefit of Big Pharma, academia researching topics relevant to Big Pharma, and Big Charity who also get financial sustainability from supporting this agenda. It purports to be for the benefit of people living with dementia, but it is a sophisticated marketing ploy where people living with dementia are necessary for achieving the statutory purpose of maximising shareholder dividend. Most medical professionals would not wish to define their ‘success’ in terms of money. Living for longer is certainly one valid NHS outcome, but so is improving quality of life. The primary driver for Kotter’s “8 change model” is to turn around failure into growth, but growth here in the NHS is different to that of a corporate.
The financial case for turning the juggernaut around that is policy to living better with dementia is that it potentially saves a lot of money in the long run. This could be as shown by the University of Southampton in their analysis of clinical specialist nurses called “Admiral nurses”. These nurses are able to stop medical problems before they gain ‘lift off’, and can help to reduce the volume of ‘avoidable admissions’. The economic case for this is, in fact, monumental.
But it’s also very much a moral one. None of the major stakeholders can afford to be ‘complacent’ about the situation which has arisen problematically now in global dementia policy. And yet this is exactly what a ‘long term plan’ might actually unwittingly encourage – effectively ‘doing nothing’ until judgment day in 2025.
It is now, I believe, time that we listen to the stories and experiences of people living with dementia – and act on them. There is a sense of urgency, but this is not to deny that this problem has brewing for a very long time. It’s essential that leaders from the world community of people living with dementia are identified fast. And they are given real power to allow this movement to shine, as John Kotter would have intended.
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Order out of chaos: why pulling together despite differences matter
If you have a passing interest in organisational learning and development, you have to be necessarily interested to some extent in organisational structures. There is remarkable ‘complexity’ in the landscape of the dementia strategy for England potentially, not least because there are so many factors which are inherently uncertain: such as political, social, cultural, environmental, legal and technological factors. The issue of “bounded rationality” though obliges us to think about what factors are within our control and within our field of vision in forming strategy, and this ‘creative strategising’ as Marshall Ganz calls it is not without its perils.
When one thinks about ‘communication’ being turned into action, there are quite a few directions we can pull in. It turns out that pair of cancer drugs can shrink tumours in nearly 60% of people with advanced melanoma, a new trial has suggested. An international trial on 945 patients found treatment with ipilimumab and nivolumab stopped the cancer advancing for nearly a year in 58% of cases. Now, these drugs are examples of ‘monoclonal antibodies’, and I once sat next to the person who invented this (disruptive) technology at dinner in Cambridge. A man called César Milstein; a very modest man, but he certainly had nothing to be modest about. Delightfully humble, he won the Nobel Prize for Physiology, despite Cambridge to my knowledge not offering him a professorship. And indeed the same technology in a different guise was ultimately responsible for saving somebody’s life from Ebola at my local hospital, the Royal Free in North London.
In December 2013, leading nations committed to developing a cure or treatment for dementia by 2025 at the global dementia summit. I personally find such a simple message at one level problematic, but at another it conveys a perfectly laudable message which conveys hope not fear. The BBC website ran a similar message today based on the melanoma development.
In the past, I have been one to raise eyebrows at the statement that dementia is where cancer used to be at twenty years ago, in that the veil of stigma surrounding dementia is comparable to that which surrounded the ‘C word’. But in the past treatments or cures (however so defined, possibly near perfect remission) for cancer would’ve been unheard of.
But it ‘frames a narrative’ in a straightforward way. In other words, the cure for dementia may in fact be a cure for Alzheimer’s disease. This in itself does matter if you look behind the details of the immunotherapy way of dealing with melanomas this way; instead of attacking the growth of cells itself, you end removing the protection of the human body protecting these abnormal cells. This is of course not a million miles from the build up of tau or amyloid substances in Alzheimer’s disease (although their precise rôles in disease production is still far from certain); nor is it a million miles from the build up of other noxious substances in other types of dementia (such as tau in the frontotemporal dementias).
Paralysis of analysis can lead us potentially to not get past ‘go’. That’s why I also find the ‘I statements’ helpful in dementia policy, and it’s been a big success of Dementia Action Alliance and the Alzheimer’s Society to plug away at this.
- I was diagnosed in a timely way
- I know what I can do to help myself and who else can help me
- Those around me are well supported and are in good health
- I get the treatment and support, which are best for my dementia, and my life
- I feel included as part of society
- I understand so I make good decisions and provide for future
- I am treated with dignity and respect
- I am confident my end of life wishes will be respected. I can expect a good death.
- I know how to participate in research
But my concern about ‘physics’ is that it is held from the laws of entropy that systems degenerate into chaos. When you look at the concourse of Victoria Station here in London, it looks like a complete dog’s dinner, and yet when you look at individuals people are heading away from and towards their platforms in some sort of order. Likewise, the messaging of narratives will be done by individuals and parts of organisations in various ways; but ultimately better drug treatments (whether ‘cures’ or symptomatic therapies), if used appropriately, might be able to complement care and improve the wellbeing of people living with dementia.
This is where I genuinely feel turning ‘communication into action’ gets potentially complicated, as long as we can pull together despite our differences. People react to circumstances in different ways, and when I ask people how they wish to contribute to ‘dementia friendly communities’ answers show a remarkable diversity, including ‘helping mum’ or ‘promoting research’. So, whether it’s a ‘call for action’ in reducing inappropriate prescriptions for antipsychotics, or for promoting support of family caregivers for dementia through a new dynamic network (such as through the previous #DAACC2A), or whether it’s a mission to promote a #ARUKfightback to ‘get behind research‘ I’m actually all for it. One point of disagreement I have with the social scientists investigating social movements is that I feel the rôle of emotions in guiding cognitions has been hugely understated in the ‘communication for action’ construct. We know that emotions play a massive role in shortcuts in guiding decision making, ultimately this is important for system leadership and ultimately whole systems regulation. Differences do matter, and ultimately many of us are striving for a whole person-centred integrated service, but what must be a common driver of transformational change in dementia, I feel, is hope overcoming perceived dissent. Acknowledging we all have something ‘to bring to the table’, diversity, is going to be essential whatever actions we ultimately decide to adopt for English dementia policy.
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About my new book “Living better with dementia”
The Alzheimer’s Disease International organisation held its annual conference this year (2015) in Perth, Western Australia. The title of the conference was ‘Cure, care and lived experience’, and indeed many delegates who attended there are living with dementia. I feel that we had a sensational time.
With dementia now on the world stage following global events, there has inevitably been greater scrutiny of who’s saying what, where, how, when and why. More detail is being added to the canvas: for example, do we really mean ‘friendly communities’, or do we mean ‘inclusive’ or ‘accessible’ communities.
Language matters enormously; and we, I feel, are collectively in a much better place than where we were only a few years. The social movement of people living with dementia and those in caring and supportive relationships, is experiencing a ‘sea change’; the disability movement has had a lot to do with it. Words which have been commonly used without a second blink, such as ‘wandering’ or even ‘carers’, now need attention, but even here there is a danger of paralysis by analysis.
It’s no longer permissible for ‘professionals’ to compound the stigma. Terms such as ‘challenging behaviours’ are now being recalibrated in response to basic humanity; an understanding that people living with dementia, like all of us, can feel very frightened.
Language is not the only factor which has framed the narrative. Laws also do. But there is a common humanity which far transcends laws. Whilst a general election in the UK has recently turned the focus onto human rights, ‘rights based advocacy’ continues to build an unstoppable momentum, partly in response to international conventions, but also in response to meeting people’s fundamental needs.
It is now palpable in international policy that there are compelling arguments to bring together all the factional parts of the health and care systems, and that the wellbeing of individuals is fundamentally dependent on building bricks in the rest of society too.
Both research and service provision for dementia are fundamentally driven by hope. This means the hope and aspirations of people currently living with dementia must not get squashed by poor care or diversionary tactics for a cure tomorrow.
People living with dementia represent a powerful resource in themselves. It’s now possible for one person trying to live better with dementia to find a friend in a totally different country through social networks. Communities literally no know no bounds, and patients happen to be persons who happen to become unwell sometimes.
None of this book is to be taken as professional legal or medical advice. What I have tried to do is to start a reasonable debate in certain areas, and it is up to others to take up the mantle. You are very strongly encouraged to go to the original sources of other people’s work which I have tried to discuss in good faith. You may legitimately come to completely different conclusions as me, and I have never intended to misrepresent anyone.
But now I’d like very much to thank certain people, not least people who have inspired me, or even not given up on me.
I’d like to thank people who’ve kindly given up time to write my Forewords (Beth Britton, Chris Roberts, and Kate Swaffer). I’d like to say thanks to people who have taught me about the dementias ever, in particular friends of mine living with dementia and their close friends and family. And I’d like to thank especially my mother and late father, without whom none of this would have been possible.
I essentially have two settled views: that demanding things happen to the nicest of people, and anything can happen to anyone at any time.
Take care.
Nothing’s going to stop us now.
Dr Shibley Rahman
London
May 2015
