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The fact that anything can happen to anyone at any time is important in research too

When an eminent professor in law in East London once advised me that no experience in life every really goes to waste, I’m not sure I believed him then. I’d just been through what I perceived as a dreadful time, a coma due to meningitis. And yet, eight years later from this, I agree with my late father: that coma was in a strange way possibly the best thing that ever happened to me.

It might be understating the situation, somewhat, to mention that the shootings in Tunisia also serve to underlie the frailty of life. I’ve known the nastiest of events to happen unpredictably to the apparently nicest of people.

Amazingly as long as three decades ago, “The Unbearable Lightness of Being” (Czech: Nesnesitelná lehkost bytí) was published as a 1984 novel by Milan Kundera. It concerned two women, two men, a dog and their lives in the Prague Spring period of Czechoslovak history in 1968.

The novel is said to be the counterpoint to Friedrich Nietzsche’s concept of eternal recurrence – this is the idea that the universe and its events have already occurred, and will recur ad infinitum. Kundera’s story offers the alternative: that each person has only one life to live and that which occurs in life occurs only once and never again – thus the “lightness” of being.

In one of her most recent blogposts, Kate Swaffer movingly talks about the changing of her musical knowledge, and how a turning point had been not being able to perceive the difference between Mahler and Mozart. This blogpost reinforced for me how fundamental a person’s unique identity is to his or her own reaction to dementia. In Kate’s case, Kate had a “deep knowledge” previously of the genres.

It’s reminiscent of how how medics should be mindful of reaction to physical disease: for example, the onset of rheumatoid arthritis in the little fingers of your dominant hand will have a different effect, possibly, to a virtuoso pianist than to a plumber.

Kate’s experience was very upsetting to Kate, as she reports. This, I can’t help feeling, is not helped by people in research, myself included, who often say that ‘musical perception is very often preserved in people living with dementia’. One is forced to think what the worth of the term ‘very often’ is, if it is you who notices a big change in musical perception?

I genuinely dislike the term ‘stages of dementia’. I’m not the only one – the Chair of the European Persons with Dementia, Helga Rohra, dislikes the term. And yet yesterday I found a factsheet on ‘the stages of dementia’ on one of the national societies for dementia.

The term ‘stages’ implies finality – that once you’ve completed stage 2, you go onto stage 3, and never to return again. I wonder if medics try to over-emphasise ‘once only’ events, and that changes are over interpreted as losses. For example, a change in cognition might be defined legally at some stage for a person living with dementia as a ‘loss of capacity’ if certain conditions are met.

Kate calls her own experience a loss:

“I am deeply saddened by the loss of my memory of music, and whilst I still enjoy listening, especially to classical and jazz, I no longer can recall who or what I’m listening to.”

This perceived idea of ‘loss’ I think is a fundamental threat to living better.

The medical profession, I am sure not intending to be nasty, operate in a world of loss or deficits, which they attempt to ameliorate with drugs. An alternative view, say the social model of disability, takes as its frame of reference “assets” or “strengths”, which always means identifying what a person can do.

Kate’s experience, also, serves as a stark warning that researchers can get it massively wrong.

The statement that “music is very often preserved in living with dementia” does not necessarily signify anything in a change of musical perception in a certain somebody living with dementia. Likewise, I’ve read reports of studies of social skills, such as sarcasm being ‘lost’ in certain types of dementia. I’ve personally known to be sarcasm to be very definitely ‘preserved’ in such individuals living with dementia.

Does this mean research is worthless? Not at all – it just means that not all the findings relate to all people at all times. Working out why certain people buck the trend is an useful exercise in itself, sometimes. It presents a practical difficulty: in that we are encouraged to see the ‘ME’ in dementia, and yet commissioners of health and social care services prefer to deal in ‘hard evidence’, of ‘cost neutrality’ and ‘improvements in wellbeing’ for the population as a whole.

Whether the events in dementia are truly ‘losses’ or ‘once only’ is indeed significant to how one reacts to them. The fact, however, that anything can happen to anyone at any time also has more than a single meaning: it means that we are all living on a cliff-edge when it comes to the frailty of life, or it means we should not be that hurt in ourselves if unexpected things happen, as they will.

 

 

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What's in a 'label' for living better with dementia?

Labels interest me hugely.

To give a flavour of the sort of mischief which ‘labels’ can cause, this definition in the Oxford English dictionary amused me much: “A classifying phrase or name applied to a person or thing, especially one that is inaccurate or restrictive“.

In fact, my own personal use of the label was in identifying my suitcase to go to this year’s Alzheimer’s Disease International conference in Western Australia.

This fits, rather, this definition: “A small piece of paper, fabric, plastic, or similar material attached to an object and giving information about it”.

And what a good conference it was.

 

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One of the main speakers this year was Al Power. Power is terrific – as a practising physician in the States, he cuts through the bullshit. I strongly commend to you his books, both of which I’ve read in full. The books cover different material to each other, can be read in any order, and make sense when taken as a whole.

Al recently took part in the highly popular ‘A meeting of the minds’ webinar series. An account of it is on the Dementia Alliance International (DAI) website here. John Sandblom and Kate Swaffer have made a recording of this session publicly available there, and I strongly urge you to go to their website to watch it.

Look – let me say something about the label of ‘dementia’ itself.

I don’t like it. I think it’s still if the case that if you were to say to someone you’re living with dementia you’re at danger of conjuring up lots of negative prejudices and pity. And this is despite quite an intense effort to inform people about the basics of dementia through national ‘awareness programmes’.

A rose by any other name might possibly smell as sweet. I don’t think ‘sugarcoating’ it using a different label will necessarily wash – such as the ‘major neurocognitive disorder‘.

I am vexed by patients being bewildered by the rapidity in the reclassification of their own cognitive problems by competent physicians as ‘minor cognitive impairment’ or ‘dementia’ – as for example, here, in Ken Clasper’s accounts.

It’s utterly baffling when the goalposts move such that ‘dementia’ gets reclassified as ‘minor cognitive impairment’; and there’s been confusion in mind of some whether ‘a minor cognitive impairment’ is necessarily a precursor to dementia. Many people with the minor cognitive impairment ‘label’ do not progress to the ‘dementia’ label.

One of the key messages in the UK dementia knowledge session programme, “Dementia Friends”, is that there’s more to the person than the dementia.

I believe this message actually acts on both levels.

One is the most common interpretation – that a person cannot be merely summed up as his or her dementia (the so-called ‘putting the ME back into deMEntia). I’ve been on wards where clinicians have viewed a learned individual as “the dementia patient”.

The other is the tunnel vision that can ensue by just seeing a dementia and no other co-morbidities, such as asthma or irritable bowel disease. And I feel this is somehow related to attributing all phenomena to ‘the dementia’, as described brilliantly in a recent radio programme.

There’s no doubt that the definitions of ‘dementia’ which emerge from the bio-medical model are convoluted, involving various cognitive domains, emphasising the biological irreversibility and inevitability of it all. Whilst technically correct, I completely agree with Al that the model imbues the deficits model of medicine, looking at what people cannot do, rather than acknowledging people’s abilities, in the so-called assets or strengths based model. I prefer Al’s definition: “Dementia is a shift in the way a person experiences the world around her or him”.

Many find the diagnosis, if correct, incredibly empowering. It signifies a end to a long journey about being bewildered about the onset of symptoms with no apparent cause. For others, it’s the trepidation of the beginning of a new phase in life. Knowing what has been the cause of difficulties might mean, in a kind world, that employers are able to make the right adjustments to keep valued people in a job. Or it might mean that support mechanisms, such as TIDE, can be put in place at once to give resilience to family carers.

The cultural change needed from the biological model to the social model of disability is a profoundly important one, I feel, to propel reablement and rehabilitation after diagnosis to the top of the policy agenda. Social workers, for example, including some who are skilled up with a particular interest in dementia, are in a particularly strong position to promote aspects of their profession, such as equality, justice, non-discrimination and social justice, particularly suited to promoting living better with dementia.

Al is not talking about ‘ignoring any distress’. And he’s also right in saying this need to cut down inappropriate antipsychotic scripts is not just a problem for residential homes, but also elsewhere in the community.

It’s lazy for a geriatrician to give a person with dementia a label of ‘sundowning‘ when a detailed sleep history has not been taken. Actually many people without dementia exhibit, arguably, a phenomenon of ‘sundowning’ without being accused of ‘sundowning’.

It’s abhorrent that a person with dementia can be given a label of ‘challenging behaviour’, when a fundamental problem is that little effort has been put into working out why a person with dementia has been able to communicate problems. An ‘aggressive’ patient might then be dosed up to the eyeballs with inappropriate antipsychotics, and this action one could argue is both unethical and unlawful – all made a lot easier by the label.

So now a picture emerges which is pretty consistent – of labels as shorthand. But we need to know whether these labels are enabling, disabling or neither. It’s been queried whether people with physical disabilities find the label ‘disabled’ empowering or disempowering; some individuals find their wheelchair empowering, some disempowering. And so it goes on.

And it’s used in shorthand in commissioning decisions. Commissioners can find it easier to ‘tick the box of dementia’, if they’ve commissioned certain information sessions on dementia while shutting day services or specialist nurses with another stroke of the commissioning pen. And given the massive comorbidities of the 850,000 living with dementia, and with an inaccurate idea of how dementia interacts with other conditions, is this commissioning by single diseases particularly services? This commissioning around single services always raises the question of the importance of dementia in comparison to other conditions such as COPD or schizophrenia. And political activists are more than aware of how single labels make insurance-based organisation of healthcare more easily deliverable.

Does a label need to be ‘approved’ to have legs? The recent details of requirements for ‘dementia friendly communities‘ are seen more of as a ‘specification’, than a ‘standard’. But here again – is a dementia friendly community elsewhere without having passed through these accreditation hoops less ‘valid’, or is some degree of specification actually required to put a stop to rent seekers and snake oils salesmen?

Most of all, I think most of the label of ‘a person with dementia’ in how it operates in a dementia-friendly community. As such ‘a person with dementia’ doesn’t access housing or transport services with a massive identifying label stuck on his forehead. One should hope that such services are ‘friendly’ to even those people who don’t know they have a dementia. Also, in care homes, whilst the care staff will know which individuals have dementia, it might not be so obvious from the perspective of a residence.

But the ‘label’ is meant to be enabling and not stigmatising (to such an extent as to promote loneliness, for example). We all have a duty to wonder, given the current Government wishes to identify more people with the diagnosis, whether the people who have been diagnosed correctly with dementia are living any better than before.

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People living better with dementia must lead on English policy

I have written previously on my gross dislike of military metaphors in discussing dementia, but there is one particular description which was used fleetingly by Marc Wortmann’s presentation this year in ADI 2015 Western Australia that I think is helpful.

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This is the reference to the ‘coalition of the willing’.  It happens to have been most recently in reference “to a group of allied countries in a military intervention, especially the United States and its allies in the Iraq War.”

Alan Milburn was recently musing at the Centre for Social Justice about how Labour predictably lost the General Election in 2015. There, Milburn stressed the need for strong leadership and, above all, the need for a strong vision. Although Milburn warned against a “35% strategy”, micromanaging its ‘offer’ to various parts of the electorate who’d disappeared (such as in Scotland or to UKIP), Milburn suggested a “100% strategy” appealing with boldness.

Similarly, I feel the English dementia policy (or rather the implementation of it) has tragically lost its way. It’s written in a chain-letter way trying to micro-manage its offer to various people such as NHS England or Big Pharma. It’s a pity these policy documents never appear to mention certain stakeholders much, however.

Whilst one might not agree with the content of Milburn’s politics, I feel these points taken cumulatively need to be applied to developing the new English dementia strategy.

I still believe very strongly that vision for dementia policy must be whole person care. Care currently is broken with haphazard communication between health and social care bodies, and people with dementia and carers not being listened to nearly sufficiently adequately. Parity of esteem’s impossible wthout adequate resources, and health being ring fenced is a Pyrhhic victory with social care funding on its knees. Physical health affects mental health, and vice versa. Dementia care needs to be strongly assets and strengths based, with a real attempt to avoid crises or avoidance of ‘fixing’ things at the last minute.

Enshrined in the code of conduct of social workers is the need to preserve dignity, fight against inequality, uphold social justice, wage war on discrimination, and uphold human rights. The social work profession are in an unique position to be professionally involved with the dealings of the Mental Capacity Act and Mental Health Act. The new statutory requirements of the Care Act has seen an obligation to promote wellbeing, an option for personal budgets, an emphasis on advocacy, and prominence of safeguarding. Unifying all of us is our need to engage with risk to live better.

With the ‘new models of care’ in the NHS Five Year Forward View (and beyond, such as from ongoing work at the King’s Fund), it is clear that various new models of care, like PACS or the multispecialty commmunity providers, are ideally suited for more effective service provision of dementia suited to the needs of people living with dementia. That primary care is not just GPs, and it should be much easier to get in and out of your own home, residential home or acute hospital as or when you need to should be top policy priorities now.

It’s clear to me specialist nurses must have a seat at the table. The need for this is two pronged. They are not only needed for the nursing needs of a person living with dementia, as or when they might arise at any stage after diagnosis. But there is also an overwhelming need to look after carers in their needs, including the enormous body of more than a million unpaid family members. Whilst many policy devices have seen carers getting more prominence in dementia policy, it’s clear there’s more to be done, such as enshrining the rights of carers in the NHS constitution, including companion rights for acute hospital admissions.

All of this depends on the person being diagnosed correctly with a dementia. But it’s not good enough that a person is given news of a possible dementia. We amongst all of us need to define better what ‘post diagnostic support’, as it’s currently far from clear what this is and who should be doing it. It’s clear that there are some components which ‘must be there’, such as end of life care, but we do need to have the debate about the ‘good death’, and who will help with advance care planning, why and where.

We need a frank discussion about resources. It’s simply not good enough to receive ‘a diagnosis of dementia’. We ideally need to know what type of dementia a person is living with. Might a person be living with a type of temporal lobe frontotemporal dementia where speech and language intervention might be helpful, or might a person be living with early Alzheimer’s disease where memory aid assistive technologies are now internationally available? Might a person living with lewy Body dementia be best advised by a clinical medical doctor to avoid certain medications? The narrative now rightly has swung towards reablement and rehabilitation, and acknowledging that equality and human rights based approaches do exist for people living with dementia.

Furthermore, with people in the public internationally wanting to get hold of and use smartphone and watch ‘apps’ for themselves, such as ‘Fitbit’, might there be a case for promoting greater voluntary self care of health by people with dementia themselves? The ‘HONDA’ phenomenon is often talked about in reference to someone with a number of risk factors for morbidity: such as hypertensive, obese, non-compliant, diabetic, asthma. It happens that many of the risk factors are those for vascular risk factors (along with smoking and high cholesterol), which remains a prevalent dementia for both younger and older age groups.

But it’s also true that it’s about 50/50, taking the population at large, whether dementia is caused by modifiable environmental risk factors. Sure, certain dementias run very strongly in families, but very many don’t. We need also to be able to up our game on the ‘non communicable disease’ aspect of policy, and this is indeed where social workers, along with allied health professionals, could help with preventive aspects of wellbeing and illness; and especially helping people to stay in employment, when of course they want to.

Above all, I strongly feel that people living better with dementia must lead on policy. This is not in a narrow ‘patient centric’ way in terms of their views of possible medications. We do know that despite the hyperbole of a potential cure for 2025, there have been no breakthroughs yet currently being widely utilised. The current state of play from NICE is that there are no medications which slow the progression of Alzheimer’s disease or affect the symptoms for more than a short time window. If anything, I’d like to see persons living with dementia to have their voices heard loud and clear on the things that they consider would help them live better, such as music iPod social prescribing. There simply can’t be one representative for 47 million people living with dementia in the world, but stakeholder bodies such as the Dementia Alliance International (and national correlates) must now be given national policy teeth.

We’re used to seeing the ‘same old’ contributors in designing policy – but here’s a thought, the new national policy should actively promote the views of those people currently living with dementia. Co-production in service provision and research is currently a big deal, and this should definitely extend to our new ‘long term plan’ for dementia. There’s undoubtedly considerable risk and uncertainty in the strategy analysis and implementation of the English dementia strategy. We’re all aware of bodies shutting down all the time ‘due to financial concerns’, all as part of the “cut back State”, but it’s hard to escape that even ‘dementia friendly communities’, vital in promoting independent living, are dependent on robust infrastructure such as housing and transport. We need to know what the views of people living better with dementia are. Communication and leadership are key.

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Is "Patient-centric dementia" the 'one last heave' of the medical model?

Around the world, there is a huge tension, both ideologically and in terms of the arguments for financial sustainability, between the ‘social model of disability’ and the pharmacological ways of doing things.

For example, only today, leading academics, researchers and practitioners from the field of dementia will meet to debate how access to music therapy can be improved for people with dementia.

Debbie Abrahams, MP for Oldham East and Saddleworth has said: ‘ I know from my personal experience of caring for my mother, who had dementia and sadly died a few years ago, just how important music is in unlocking memories and connecting with the past. Music has a unique role in reaching parts of the brain in ways other forms of communication cannot and has been shown to be incredibly beneficial to people with dementia.’

That music can unlock memories and emotions is completely to be predicted with a working knowledge of the cognitive neuroscience of the human brain, and the parts of the brain which are known to be affected in types of dementia. I in fact review this neuroscientific evidence (and the cognitive neurology corollary) in a chapter of my new book on living better with dementia.

In my first book on living well with dementia, I argued that an understanding of the ‘person’ (“personhood”) and his or her interaction with the environment is essential for pursuing wellbeing for anyone living with dementia. I still fundamentally believe that – nothing has in fact changed in the intervening year since that was published. As Kitwood argued, “It is a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being. It implies recognition, respect and trust” (Kitwood, 1997, p.8).

 

However, there’s big big money in ‘patient centricity‘. And, as Kate Swaffer said earlier this year, ‘yep, there is really big money in dementia’.

 

You can analyse til the cows come home why ‘choice’ is difficult to achieve in living well with dementia. The fundamental drive between the “Lansley reforms” as they affectionately came to be known, or the Health and Social Care Act (2012), was to introduce market competition between suppliers with a view to ‘liberalising the market‘, supposedly to drive down costs and improve quality. I happen to believe this was a dud approach; and so, as it happens, so did other people much more knowledgeable and influential people than me.

Anyone who purports to understand market economics, aside from the issues with few big providers providing a somewhat monopolistic effect, will warn you rightly about the ‘information asymmetry’, or mismatch in information, between consumer and vendor (seller). This is of course was the foundation of the work on the Nobel Prize in economics awarded in 2001 to Prof Joe Stiglitz and colleagues. This might include, for example, that a person living with dementia might simply not know that other non-pharmacological ways of promoting living better with dementia might exist, such as a simple iPod.

A fundamental way in which you might not achieve ‘choice’ is if the money runs out; a major criticism of personal budgets is that, behind the ‘choice agenda’, it merely acts as an instrument of rationing at an individual basis. But confronted with a huge burgeoning drugs bill, the case for the NHS and social care to embrace truly innovative social prescribing is overwhelming. There are various ways in which this could be achieved, such as giving NICE the powers to adjudicate on the cost efficacy of pharma vs non-pharma (which would not just be innovative but quite revolutionary), giving GPs ‘social prescription pads’, vastly improving the information given to NHS patients and people who benefit from care from the social care system, and so forth.

There is, now, a genuine sense that Big Pharma have to do something pretty radical to stay relevant – but my advice to them is to ‘stay classy’. Personhood is a long-existing narrative for us in the world of the social model of disability; it has meaning for active reablement and rehabilitation for people dealing with cognitive abilities and disability following diagnosis. It is hard to argue against the fundamental premise of integrated, person-centred care, especially for dementia policy globally. But, at the risk of viewing this as ‘mission creep’, it is worth analysing how this is merging via the world of ‘patient leaders’ towards ‘patient centricity’.

There’s a lot of guff written about patient centricity, but I did find a report by Heidrick and Struggles on this emergent theme very useful. It’s called “‘Walking the talk’ in patient centric pharma“. Of course, ‘patient groups’ refuse point blank to have any truck with the idea that their patient advocates are merely stool pigeons for Big Pharma. In fairness, all of the patient leaders I know are highly upstanding people who are clearly not mouthpieces for pharma.

But that is a separate argument from the fact that patient involvement in itself is a source of ‘competitive advantage’, in the form of providing an unique proposition or offering. Having greater ‘consumer involvement’ can, as a supplier or provider, distinguish you from your competitors. This is exactly as to be predicted from Prof Michael Porter’s ‘five forces of competition’ theory and practice.

And also different configurations of the ‘LEGO bricks’ can be made to build into a more attractive ‘offer’ in consumer speak. This is called in the trade, literally, “value creation”. It’s at the root of the W1A “Head of Better” joke, which Alison Cameron hilariously brought up in her speech at the NHS Confederation recently.

But ‘patient centricity’ does have to establish itself from another form of marketing. Marketing essentially is finding the ‘holy grail’ of untapped customers, and increasingly at the root of this is understanding the consumer psychology and behaviour of why consumers happen to be attracted to a brand. For example, when a patient is attracted to medicine, does he or she happen to like the look of the packaging or name of the brand, rather than a coherent understanding of the risks and benefits of the medication?

This is no less important for any drugs purporting to improve the symptoms or delay progression in Alzheimer’s disease. It happens that the current NICE guidance is that no medication either slows the progression of Alzheimer’s disease or has a long-lasting effect on symptoms.

This picture, which I’ve redrawn from Heidrick and Struggles, I think is very helpful.

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A “chief experience officer” sounds worryingly like a “Head of Better”, doesn’t it? But the idea of the ‘patient centric leader’ (horrible term though that is) as a broker between the market and unmet needs is a fruitful one. Also, the diagram does allude to a massive tension in the commercial viability and applications of innovation worldwide; the tension from innovation in protecting intellectual property of new discoveries, or ‘regulation’, and the commercial application of this to produce commercial advantage through ‘shared value’ and collaboration perhaps.

Actually, what struck me the most was the reference to Parkinson’s disease, as ‘more than the shaking palsy’ of Sir James Parkinson. Correct. But if you were a physician wanting to use an example you wouldn’t want to use this one. Firstly, it is known that the cognitive, emotional and psychological symptoms of Parkinson’s disease long predate the onset of the movement problems (such as the stiffening, ‘mask like face’, or tremor); and yet Big Pharma has been treating the movement symptoms, and fixated on that, at the exclusion of treating the other symptoms. It’s actually their fault. You can of course argue what symptoms are most distressing; but the medical profession seem unwhat unclear on whom they’re treating with their drugs; the patient himself or the carer (who might be a husband or wife)?

Secondly, I remember my time as a junior physician on the movement disorders firm of the National Hospital for Neurology and Neurosurgery. We used to perform the ‘apomorphine challenge’ to people with Parkinson’s disease, to see who would benefit from a dopamine-boosting drug. Of course, this is likely to be replaced with a sophisticated genetics blood-test screen one day. But here the emphasis is on why a drug might not work in some, rather than why it might work better in some. It entirely signs up to the medical deficits model of disease, rather than the ‘strengths’ or ‘assets’ based approach of living better. Living better is fundamentally about what people can do, rather than what they can’t do. Similarly, a better ‘drug experience’ might involve an understanding of why a particular drug might not be effective for you, maybe something to do with your own liver metabolism. In relation to drugs for dementia, few cognitive enhancing drugs have actually been demonstrated to improve wellbeing per se; other than the drugs which reduce ‘behaviours’ which have become pathologised by the medical profession, called ‘BPSD’, to extend another market. At the heart of the vast majority of these pathologised behaviours is a failure in communication, which is more cost-effective, moral, and rational means of dealing with the problem than dosing someone up to the eyeballs with medication.

As a person whose physical disability came on in adulthood, I have every bit of solidarity with patient leaders. I don’t want their skills, knowledge and experience to be misused. I think, even, they ought to be paid like any other consultant in any other sphere of life. And the patient experience is extremely  important in ascertaining whether the NHS and social care systems are flexible and responsive, and ‘fit for purpose’. But likewise there’s an on-running need to find the exact rôle for Pharma in the overall English dementia strategy, and all of us have some responsibility for this. Even me – who is business trained and a physician, but, above all, a patient himself. My advice is, for these corporates involved in patient centricity, is that go first to the credible international stakeholder groups or domestic think tanks, as a first port of call, rather than Adam Smith’s ‘invisible hands’ who might not actually have the patients’ best interests at heart.

 

Reference

Kitwood, T. (1997). Dementia reconsidered: the person comes first. Open University Press.

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The two cultures and the dementia revolution

dark matter

 

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

One seminal passage goes as follows:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

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The issues that Manchester poses for 'dementia friendly communities'

Manchester tram

 

I spent a lot of time physically in Manchester last year, for one reason or another. As a ‘Northern power house’, it happens to be only two hours away from London Euston on the train.

Manchester has forced to me to think – in dementia policy – whether independent living is consistent with communities, and whether Manchester could help us here with the dementia friendly communities policy work stream in general. Independent living can be promoted through upholding of human rights (hence the reference to right based advocacy and the UN).

When news of the ‘People’s Republic of Manchester’ was breaking last year, I remember the criticism that came with it from the NHS policy stream. That is, locally devolved powers might undermine the national nature of the health service. At worst, the devolved Manchester was also devolving blame for cuts to a local level.

It’s possibly no coincidence that Phillip Blond has been involved with both the DevoManc agenda and the Big Society. In terms of the ‘Big Society’, one of Blond’s fundamental arguments can be interpreted as that ‘the left’ did not actually deliver on its communitarian politics.

One of the central premises of the Big Society is that individualism is best served with an empowerment of people’s relationships with another. The effect of a monopolistic relationship with the State, or as more’s the case outsourced private providers, is that such relationships do not gain power.

Coincidentally, it happens that one of the biggest criticisms of ‘dementia friendly communities’ is that it is in some way or other a ‘cover for cuts’. The problem was that, temporally, the Big Society surfaced at approximately the same time as the austerity-led agenda following the global financial crash.

Whilst latterly there has been talk of care homes forming ‘community hubs’ as part of dementia friendly communities, it appears likely that a central thrust of dementia friendly communities, policy-wise, was to promote ‘independent living’. This ‘independent living’ rose to prominence from the disability movement.

With the Prime Minister Dementia Challenge, there has been muttering on the spotlight received by dementia (even given the devastating cuts in social care), compared to disability (including the demise of the Independent Living Fund).

Dementia is not a natural part of aging: that is why it has become important to separate the WHO ‘age friendly cities’ policy stream from dementia friendly communities, even though they show many commonalities (and to separate ‘independent living’ from ‘successful aging’).

But it is nonetheless clear that there is some sort of relationship between the ‘health of the nation’ and resources the State has to play with.

I am physically disabled, which is why I particularly appreciated the in-city tram service within the city of Manchester, which made it very easy for me to move around the city of Manchester.

For the wellbeing of people living with dementia, there has been a growing realisation that integrated services go substantially more than merely health and social care (important though they are); they necessarily involve, for example, housing and transport. It is symbolic than the policy streams of ‘social determinants of health’ and ‘friendly cities’ or ‘friendly communities’ have maintained their silos both at national and international level.

But, with growing realisation of international instruments such as the United Nations Convention on the Rights of People with Disabilities, rights-based advocacy is reaching another level. The use of the word ‘community’, especially given the devolved nature of politics recently, puts in sharp focus at what level ‘friendliness’ (however so defined) operates.

Glenn Rees, current Chair of Alzheimer’s Disease International, has often commented on the ‘dementia friendly societies’ policy stream of Alzheimer’s Australia and the contribution of Ita Buttrose. Manchester throws up the question of ‘why stop at community?’ It might be that it is actually necessary to devolve national functions to a local level if only to empower individuals and us collectively.

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Should there be a legal duty ensure people with dementia get help to manage their finances?

A press release on the new Scottish Social Attitudes report about dementia (and caring) was published late yesterday evening.

I found the findings very positive taken as a whole, in relation to the Scottish dementia policy transposing ‘dementia friendly communities’.

However, one of the ‘issues’ that dementia friendly communities as a policy was supposed to address still remains a stubborn problem area.

That is, a very large majority of people (83%) said they ‘agreed’ or ‘agreed strongly’ with the statement that ‘caring for someone with dementia is often very lonely’.

Latest initiatives such as TIDE, “Together in Dementia Everyday”, will be in this context most welcome. Joining up family carers in a support network is a very sensible thing to do, for a whole host of reasons.

Another finding for me was particularly noteworthy, although the findings on stigma continue to be of huge interest to me (especially in the area of employment especially for people with younger onset dementia).

That was, “88% of people thought that the Scottish Government should require banks to have a legal duty to make sure people with dementia get help to manage their finances.”

Any law has to be enforceable, so there are operational questions about how such a civil law would come to effect, taking offences on the civil standard of proof, the ‘balance of probabilities’.

A legal duty for banks to ensure that people with dementia get help to manage their finances assumes that such individuals can be easily identified. The first problem is whether a person with dementia will necessarily know they need help in managing their finances. For example, there will be some people with certain dementias with full capacity who feel they can manage their financial affairs.

On the other hand, there might be certain people with dementia who show a strong risk-taking or impulsive streak, but with full capacity, who are possibly ‘dangerous’ when it comes to managing their finances. It is impossible to offend autonomy for someone with full capacity (otherwise it becomes coercion or at worst assault). There’s currently a strong policy ethos, right I feel, that you can’t ‘wrap people up in cotton wool’ either: you need risk to live better with dementia, as I have long argued.

But, taking an offence into the realms of civil law, would make it easier to find banks culpable, in theory.

This is because the alternative might be a criminal offence, and that would have to be ascertained ‘beyond reasonable doubt’. We already know from the work of the Serious Fraud Office on how difficult it can be to make prosecutions using this level of proof.

The offences under the Fraud Act (2006) which would fall under this realm are not clear cut either: most lawyers feel the actual offences would be fraud by false representation, fraud by failure to disclose or fraud by abuse of position, but we have very little case law on this. We would have to revert to the original Law Commission guidance on the intent of the Fraud Act (2006), and the concomitant parliamentary discussions by the legislature behind the purpose of the Act.

The duty from the bank, however, could be legislated for as an extension of existant civil legislation, such as the Theft Act (1968), or could be a completely new stand alone statutory instrument.

And is the bank the correct defendant anyway? The experience of the Care Act in England has kept personal budgets in the limelight, with interest in safeguarding aspects. If more people take control of their own individual budgets, should the accountability for this budget transfer, from say a bank, to the holder of a personal budget or some appointed proxy?

Such a duty is an example of a ‘rights based approach’, further advancing the notion of people with dementia having enforceable rights. But there is a valid question here as to why this cannot be done under current legislation: in other words, why could a duty not be enforced under the obligation of reasonable adjustments under the Equality Act? It does not matter that banks are clearly doing a public function?

The report on social attitudes is undoubtedly welcome, and further strengthens the need for the ‘8 pillars of community support’ in the Scottish jurisdiction.

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When the awareness is not enough. Family experiences must guide acute care for dementia.

Chris Roberts, living with mixed vascular and Alzheimer’s dementia, stated clearly in a session run by Angela Rippon at the Alzheimer’s Show: “It’s not only awareness we need: it’s actual education”

He was of course referring to the mushrooming of ‘dementia awareness’.

At one level, “awareness” is very basic. It’s called “tier 1” in the jargon, as the ‘entry level’ for how services for dementia could be organised.

Ceri Hodgkison and Dr Karen Harrison Dening in a talk at the Royal College of Nursing explained how dementia care lies on a continuum at the Royal College of Nursing the other week.

graphic

A concerted effort must now be made into why many people find the actual disclosure process of the diagnosis of dementia very unsatisfactory. This must aim at looking at why the beliefs, concerns and expectations of the imparting of that information fell below standard, sometimes, and there must be mechanisms for acting on that at an individual basis.

The English nursing strategy provides for a diversity of nurses involved in care: ranging from “dementia aware” to “dementia knowledgeable” to “dementia specialist”.

There has been a drive to denegrate specialist knowledge, in a general drive towards ‘generalists’, but I feel strongly there is a place for all contributions. Simply, awareness is not enough.

The complexity of dementia service provision in part comes from the unique way in which the brain can be affected in the hundred or so different types of dementia. Dementia, however, I would humbly submit poses considerations of its own. It directly affects how the person communicates with the world, and this can potentially alter the dynamics and perception of that person.

It also poses clinical issues for the National Health Service and social services. A person living with dementia as such is unlikely to present to the NHS with ‘an acute exacerbation of dementia’, though in one sense might do such as repeated falls. A person living with dementia as the condition progresses is likely to accumulate an increasing number of other clinical diagnoses which need addressing; they may affect the decision for transition into a residential care setting.

A person living with dementia may enter an acute hospital setting from one of many other care settings; such as CMHTs, hospices, care homes, nursing homes, or even directly at home (if the emphasis has been on ‘self care’).

A member of the family will often find himself or herself as a pivotal person involved in the care and/or support of a person with dementia. He or she can know things other people will not know.

So when a person living with dementia enters a care setting, there is a fundamental change in dynamics which happens. Often a member of the family, thus far in a caring role, finds the care being transferred to relative strangers. But there, in fact, remains a ‘threesome’ – the person with dementia, carer, and member of staff (such as nurse, allied health professional, etc.)

In a paper published in Dementia journal in 2014 from the School of Nursing and Midwifery at Monash University, Australia, the authors looked systematically at the experience of family caregivers of people with dementia who were admitted to hospital.

People who are ‘family caregivers’ clearly have substantially more than an ‘awareness’ of dementia. They are in effect ‘experts’ of care, who take their responsibilities of care extremely seriously. They can have substantial care and support needs of themselves.

One sentence in this paper really caught my attention.

“Carers often have a negative experience with hospital care (Jurgens et al., 2012) and can feel overwhelmed and under-noticed by the system and the teams of clinicians who work within it (Haesler, Bauer, & Nay, 2007).”

And yet this the very opposite of the ‘triangle of care’ proposed in a strong contribution by the Carers Trust/Royal College of Nursing.

This is a massive deal: as people very close to a person living with dementia find themselves rapidly acquiring ‘visitor status’, in an institution, according to the authors.

And the emotions can be huge in being asked to respond to their experiences.

“One participant said that it was a relief to be able to talk confidentially about her feelings to someone external and that ‘Noone had asked her how she felt before ’. Another who was crying intermittently throughout the interview was asked by the researcher whether she would prefer to stop the discussion. She responded ‘No, it’s a relief to get this all off my chest ’.”

It is arguably a case of ‘common sense and compassion’ to allow friends and family as company for people living with dementia during the course of a ‘hospital stay’; and John’s Campaign has made huge progress with this, not least pursuant to monumental leadership by Nicci Gerrard.

We need also high quality research, rather than marketing, into the ability of stories from caregivers and people with dementia who feel able to provide such narratives to shape local acute services in dementia.

Sometimes it feels as if ‘the world is not enough’; but, as start, awareness is not enough.

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Should the workplace a better place to be if you live with early stages of dementia?

First of all, I should like to say at the outset that I don’t particularly like the term ‘early stages of dementia’. There are about a hundred different causes of dementia for a start, and they all progress in persons in an unique way at sometimes vastly different rates.

Helga Rohra, Chair of the European Working Group for Persons with Dementia, instead prefers to refer to the ‘faces’ of dementia. And this indeed is much more in keeping with a ‘person-oriented’ perspective.

Let us say, for the sake of argument, that whatever ‘dementia’ you’re talking about, there is an earlier period when you are developing symptoms of your own dementia and that you happen to be at work.

For the dementia of the Alzheimer type, you could have noticed problems in your learning and short term memory. You might’ve found yourself getting lost in travelling what should’ve been straightforward routes.

Or for posterior cortical atrophy, you happen to have noticed problems with your eyesight, seeing double, or things blurred; oe even falling – and forgetting the odd thing or to.

The reality is that the onset of a dementia can be quite subtle, and, if you’re in work, you may happen to think it’s unlikely your difficulties are due to a dementia. The problem with ringing up a ‘dementia hotline’ in a dementia charity is that you can get taken down a dementia ‘pathway’ of questioning; thus your symptoms are not given consideration for non-dementia causes.

The aim of the ‘dementia friendly communities’ policy worldwide, I feel, has been totally underestimated for its aspiration for people who’ve been given a diagnosis of dementia to ‘live better’.

Whilst I balk at the terms of ‘successful’ and ‘productive’ being used as labels in reference to an individual’s lifestyle, the idea that someone could live independently with appropriate support is entirely consistent with a philosophy of reablement and rehabilitation after diagnosis.

Kate Swaffer’s seminal work in prescribed disengagement (TM) all too clearly defines how things can be made to appear to be going downhill following a clinical diagnosis of dementia. Kate’s work is inspirational as it gives people hope, and gives a clear explanation of what happens. I don’t want to appear hyperbolic, but this work has the same potential to be of equal gravitas as that by great leaders who’ve changed the course of history.

Companies vary hugely in their resource allocations ability. I suspect we will see this as British businesses decide upon whether they wish to stay in Europe. Not oversimplifying the debate, but small and medium enterprises might have a somewhat different attitude to the ‘red tape’ of Europe to the free movement of capital and movement opportunities presented for large multinational corporates.

There is no reason to suggest that workplace policies will differ.

The World Health Organization has previously explained the background to the importance of its work on non-communicable diseases for the workplace.

“The European Network for Workplace Health Promotion has similarly issued a number of statements in support of workplace health promotion, including the Luxembourg Declaration on Workplace Health Promotion in the European Union, the Lisbon Statement on Workplace Health in Small and Medium Sized Enterprises and the Barcelona Declaration on Developing Good Workplace Health Practice in Europe.”

In response to the global burden imposed by noncommunicable diseases, WHO developed the Global Strategy on Diet, Physical Activity and Health (DPAS), which was adopted by the 57th World Health Assembly in May 2004. The goal of DPAS is to promote health by guiding the development of an enabling environment for sustainable actions at individual, community, national and global levels which, when taken together, will lead to reduced disease and death rates related to unhealthy diet and physical inactivity.”

As Kate Swaffer pointed out in a workshop for the Alzheimer’s Disease International conference in Western Australia in April 2015, people developing symptoms of dementia should be given the opportunity of whether they wish to stay in employment. If the person then does wish to do so, then there’s no reason to consider dementia as anything other than a disability (if indeed given a diagnosis of dementia); and this should bring with it legal rights against discrimination in theory. The same rights, in theory, are supposed to protect against unfair dismissal, although what happens in practice (especially in relation to when the diagnosis becomes ‘official’) is a complicated area.

The timing of this diagnosis is therefore all crucial. Irrespective of local difficulties in human rights legislation in England, the Universal Declaration of Human Rights applies all around the world to enforce universal inalienable rights. It’s a matter of semantics whether dementia is a disability as far as the United Nations Convention of Rights for People with Disabilities, particularly in relation to transposition to local law, is concerned – but many feels dementia does ‘fit’; and certainly does so in relation to the guidance on the Equality Act (2010).

So people living with disabilities, whether or not they are in the workplace, should be protected by human rights law. And we saw hint of this need for corporates to sign up to this from guidance for corporates on corporate social responsibility and human rights (from guidance issued in 2012).

Google is a multinational corporate, with huge clout.

That is why their lead is particularly noteworthy. They have recently announced the following:

“One billion people worldwide live with a physical or developmental disability. And for those in developing nations, many of these disabilities dictate a life of social and economic marginalization. But Google’s doing something about it. The company announced Tuesday that it is funding a $20 million grant for its latest Impact Challenge, one aimed at making the world more accessible for those with disabilities.”

“Specifically, the new Google Impact: Disabilities program seeks to “build awareness, identify solutions and help create universal access for people with disabilities.” To that end Google is soliciting people on both sides of the issue — people (or those whose family are) living with a disability as well as innovators, inventors and tinkerers. The Google’s has already teamed up with non-profit startups like Mission Arm, E-Nable and World Wide Hearing, and now it’s looking to fund more solutions to the tune of $20 million.”

The confluence of rights-based approaches, Big Money and dementia friendly communities is a highly significant one. It is vital that stakeholder groups such as the Dementia Alliance International, as the only international group run by people with dementia advocating for people with dementia, are amongst the first in line to make a pitch.

 

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A sense of urgency in world dementia policy?

snooze

“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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