Tag Archives: care

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Dementia care and support in a hypernormalised world, creating a virtual unreality

In March 2016, the Secretary of State for Health said, “A dementia diagnosis can bring fear and heartache, but I want Britain to be the best place in the world to live well with dementia”.

Of course, where fantasy begins and reality stops for Jeremy Hunt is a matter of conjecture, given the wilful blindness to the catastrophic A&E waiting times and delayed discharge performance.

On this theme,  “HyperNormalisation” by Adam Curtis has just been aired on the BBC iPlayer. It tells an epic narrative spanning 40 years, with an extraordinary cast of characters. They include the Assad dynasty, Donald Trump, Henry Kissinger, President Putin, intelligent machines, Japanese gangsters, suicide bombers and Colonel Gafaffi. All these stories are woven together to show how today’s fake and hollow world was created. Rather than face up to the real complexities of the world, Curtis articulates that they instead constructed a simpler version of the world in order to hang onto power.

Clinicians are very keen to label persons with dementia as ‘abnormal’ in terms of cognitive or behaviour, when often these decisions are perjorative and based on an arbitrary cut-off point of what is normal. With people with dementia being seen in hospitals described as ‘overstretched, underfunded and understaffed‘ by the Royal College of Physicians recently, with savage social care cuts as described clearly by the King’s Fund, it is hard to see where precisely the claim for ‘the best country to have dementia in’ can come from? Cited in the Hypernormalisation film is “Roadside Picnic” (Пикник на обочине) is a short science fiction novel written by Arkady and Boris Strugatsky in 1971. Roadside Picnic is a work of fiction featuring zones exhibit strange and dangerous phenomena not understood by humans, and contain artifacts with inexplicable, seemingly supernatural properties.

For clinically diagnosed persons with dementia, performance at some stage in cognitive domains, with supportive evidence say from neuroimaging, EEG, CSF or blood tests, the paradox exists for people with dementia having difficulty in ‘thinking faster’ are caught up in a hyper-fast hyper-connected world.  The Internet of things (“IoT”) is the trendy internetworking of physical devices, vehicles (also referred to as “connected devices” and “smart devices”), buildings and other items—embedded with electronics, software, sensors, actuators, and network connectivity that enable these objects to collect and exchange data. The IoT allows objects to be sensed and/or controlled remotely across existing network infrastructure, creating opportunities for more direct integration of the physical world into computer-based systems, and resulting in improved efficiency, accuracy and economic benefit. This can of course make the blurring between fantasy and reality even more difficult.

Care or nursing homes, hospitals or hospices, all seem to suffer a dire shortage of trained staff, and local problems might exacerbate this situation in future.  And the search is on for suitable companions, including a pet. But sometimes animals are often not allowed in nursing homes or day care centres, due to the risk of injury to patients, staff or visitors, the possibility of allergic reactions, and the potential nuisance of cleaning up after the animals.

Unsurprisingly, robots might be the next big thing in dementia care and support. The term ‘robot’ was first used in 1920 by the Czech playwright, Capek in a play entitled Rossum’s Universal Robots. Here robots turned against their human masters, a plot which may partially explain the tension between fascination and distrust of robots.

Change and even progress may be happening fast. In 2013, MIT engineering professor John Leonard told the MIT Technology Review that “robots simply replacing humans” would not happen in his lifetime. Today, Google’s autonomous cars have traveled more than 1m miles on public streets, and self-driving taxis seem all but inevitable. Domino’s Australia have even unveiled a pizza delivery robot in Brisbane, and Amazon are talking about making deliveries by drone.

In the last few years, many projects have addressed the use of robots for supporting elderly people aging in place, including people with dementia.  With the increasing incidence of dementia and the societal demand for cost reduction in care in general, a need grows for innovative care concepts to sustain and preferably improve the quality of care.

Socially Assistive Robots (SAR) are an emerging form of assistive technology encompassing all robotic systems capable of providing assistance to the user by means of social interaction.

SAR can deliver help at different levels:

(a) supporting user’s cognitive or functional abilities (e.g., task reminding and monitoring);

(b) offering the user opportunities to enhance social participation and psychological well-being (e.g., communication and social applications, companionship);

(c) providing remote and continuous monitoring of user’s health status (e.g., blood pressure or fall detection sensors); and

(d) coaching the user to facilitate the promotion of healthy behavior and achievement of health-related goals (e.g., improving nutrition. physical activity).

The therapeutic use of SAR in the context of dementia care has received increasing attention over the last decade as illustrated by a growing body of research). Most of these studies have focused on PARO, a therapeutic animal-like robot modeled on a baby harp seal, mainly employed to encourage social behaviour and/or alleviate stress among persons with dementia. It has five types of sensors: tactile, light, audio, temperature, and posture, with which it can perceive people and its environment. It can respond to stimuli, perceived by its sensors, by making noise, moving its eyes, head, and flippers.

Several intervention trials demonstrated promising effects of participating in PARO therapy in increasing motivation, improving mood, reducing stress, and increasing social communication in elderly people.

There’s also a need to consider the context of the usage of an assistive robot which takes into account the presence of other human beings. This may be much more challenging: functionalities of robots should be designed by taking into account various social contexts, which include, for example, the possibility of a robot to assist the caregiver and not directly the person with dementia?

Caring for the carers is a huge aim of person-centred dementia care worldwide. Results over many years have indicated that due to significantly higher levels of care provision in recent years, spouses experience differentially more depressive symptoms, physical and financial burden, and lower levels of psychological well-being.

There is also remarkably little research how the views of persons with cognitive impairment and caregivers converge or diverge regarding the acceptance of SAR. A more comprehensive approach should include both groups’ perspectives to better understand technology acceptance and usage intention of SAR in the general context of dementia care.

Part of the cognitive footprint of people with dementia can be marked attentional problems, for example manifest as impulsivity, disinhibition or distractability. The symptoms of people with behavioural variant of frontotemporal dementia (“bvFTD”) are most often a change in personality and behaviour. With the application of “virtual reality”, it might now be possible to elicit and examine the patient’s actual interpersonal behavior and responses to avatars while manipulating the social-emotional environment. The immersion of bvFTD patients in a virtual environment also allows the exploration of potential rehabilitation strategies for dealing with their social-emotional changes.

In a parallel universe, carers also might give themselves avatars and be involved in peer support groups known to be effectively reduce stress from caring for someone with dementia. While online groups have been shown to be helpful, submissions to a message board (vs. live conversation) can feel impersonal. Having avatars can have its advantages: it allows the carers to join the group even when they have a busy day, and may not have had a chance to put on their best T shirt in the way they would prefer for another video viewer.

A problem is, however, that in virtual  environments, we can be fooled into thinking that we are our avatars. People in virtual environments tend to behave in ways that are expected of their avatars. For example, if you embody a tall avatar, you’ll negotiate more aggressively than if you were given a shorter body.

As the world moves towards a future based on virtual reality, artificial intelligence, and machine learning, we have to think about where to draw lines to mark the distinction between reality and fantasy, what kinds of situations are problematic, and how to refashion the rules for a digital world. There are many legal and ethical issues involved.

The future is here?

Hyperconnectivity is the increasing digital interconnection of people – and things – anytime and anywhere. By 2020 there will be 50 billion networked devices. This level of connectivity will have profound social, political and economic consequences, and increasingly form part of our everyday lives, from the cars we drive to the medicines we take. All of our institutions will have to make increasingly thoughtful trade-offs between the value inherent in a hyperconnected world and the risk of operational disruption, intellectual property loss, public embarrassment, and fraud that cyberattacks create.

Concerns have been raised about a possible relationship between virtual reality and desensitisation. Desensitisation means that the person is no longer affected by extreme acts of behaviour such as violence and fails to show empathy or compassion as a result.

Another issue related to this is ‘cyber-addiction’. There are people who become addicted to virtual reality games and as a consequence, start to blur the boundary between real and virtual life.

But all of this might be Sir Lynton Crosby’s “dead cat strategy”, the man behind David Cameron’s ‘successful’ 2015 general election campaign.

Adam Bienkov describes the strategy thus:

“”Let us suppose you are losing an argument,” Boris Johnson wrote earlier this year.

“The facts are overwhelmingly against you, and the more people focus on the reality the worse it is for you and your case.

“Your best bet in these circumstances is to perform a manoeuvre that a great campaigner describes as ‘throwing a dead cat on the table, mate’.”

Going on to describe the manoeuvre he explains: “The key point, says my Australian friend, is that everyone will shout ‘Jeez, mate, there’s a dead cat on the table!’; in other words they will be talking about the dead cat, the thing you want them to talk about, and they will not be talking about the issue that has been causing you so much grief.””

This new hyper normalised and hyper connected world may be the best thing to happen to person-centred integrated care in dementia ever.

Or it might be a dead cat simply presenting a virtual unreality.

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If we're 'curing' Alzheimer's disease, can we 'solve' delayed discharges too?

Cambridge-University-Senate-House

The famous ‘Two cultures’ speech was delivered in 1959 at the Senatre House in Cambridge by CP Snow, controversially on the growing schism (growing since the Industrial Revolution, at least) between the arts and sciences.

Coincidentally, 37 years later, I did finals in the same location in neuroscience for my Bachelor of Arts degree, with a mind to do a PhD in young onset dementia at Cambridge (which I then did).

I was really struck by the “two cultures” yesterday. In an ideal world, we shouldn’t have to fight about it – but as some will tell you on one particular political side, money does not grow on trees, but curiously there always seems to be enough money for certain types of research.

I found the Horizon programme on a cure for dementia good in as far as it went. It wasn’t really on a cure for dementia, but mainly an advert for some grant programmes in biomedical research in Alzheimer’s disease.

Nick Fox, now a Professor at Queen Square and Director of the Dementia Research Centre there, but who was getting towards the end of his protracted time as Specialist Registrar to Prof Martin Rossor when I was a junior there, explained how voxel based morphometry (specialised brain scanning) could be used to confirm a case of posterior cortical atrophy, previously undiagnosed.

The pitch though was entirely to miss the point. It would have been much more helpful to know what the precise rehabilitative offering for the patient with posterior cortical atrophy was – the patient himself described his own vision as “a jumble” in his own words.

There was hurried talk of tau markers in the cerebrospinal fluid. But a lumbar puncture is an invasive procedure. And a cure which could stop the building up of toxic tau would have been useful to discuss, but Fox totally skirted around what the benefit of his hard won diagnosis was.

If you take the view that the precise name of the dementia is relevant, but the dementia is merely a pathological description of a buildup of tau in the brain somewhere, that helps you with your sledgehammer approach of taking an anti-tau drug forward. Then it means Fox should have entered into some sort of debate as to whether we are all ‘tauopathies’ now, ranging from Alzheimer’s disease, to frontotemporal dementia or posterior cortical atrophy.

Does this make the underlying genetic basis irrelevant? I think somewhat the arguments that posterior cortical atrophy is a variant of Alzheimer’s disease have always been rather anaemic, without reference to why there is such selective neuronal degeneration in the visual parts of the brain, and without reference to the underlying commonalities in genetics basis.

But the problem for Fox with his ‘dementia can be spotted now a decade before symptoms approach’ is the lack of answer to what proportion of people with slightly aberrant brain scans or markers, at what time, would be taken forward for a possible therapeutic treatment.

We saw elsewhere a different person, made patient, through apolipoprotein genotyping, who had become quite distressed about the lack of genetic counselling.

The actual situation for Fox is that there are hundreds or thousands of neurologists or general medics who do not even know what the clinical presentation of posterior cortical atrophy is, so it is no wonder that such patients both here and abroad get taken round the houses, invariably through an ophthalmologist or eye clinic, over years, prior to a diagnosis.

The programme was predictably full of ‘sufferers’ and ‘devastating’, shock doctrine stuff, rather than ANY acknowledgement of any people with dementia leading fulfilling lives. I don’t have any ideological problem with people crying on TV as it represents an authentic emotion.

The narrative however was fraudulently set up as an epidemic of dementia – despite the fact it is now widely conceded that the prevalence of dementia is falling – and here’s the sunny uplands of cure to solve everything. It was good to see cognitive neurorehabilitation get a mention though, even though it was essentially bordering on window dressing.

Quality of care research would be desirable too, as well as good quality of life research.

This was yesterday’s headline in the Times.

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The problem was made more graphic with genuinely horrific stories from the Health Ombudsman’s report on poor quality of elderly hospital care, focusing on delayed discharges. But the data hailed from 2014/5, that’s a good two or three years after the Prime Minister’s Dementia Challenge, one year prior to the Prime Minister claiming he wanted the UK to be ‘the best country to have dementia in by 2020’ in a completely deluded manner, with social care funding on its knees.

The social model of disability correctly admonishes calling all people with dementia as ‘sufferers’ or ‘victims’, but rather holds them to be active participants in citizenship with fundamental human rights, such as a right to dignity. And yet another costly report has shown what we knew already – of people languishing stuck in hospital, who cannot be discharged. We knew all this prior to the last general election too. People have sadly suffered at the hands of the NHS and social care due to mismanagement.

Don’t get me wrong. Biomedical research is important. I followed the tweets from the British Geriatrics Society conference, and one of the tweets involved somebody with dementia who had entered into a coma due to a drug prescribed for delirium. This example shows why it does matter to diagnose some types of dementia (diffuse Lewy Body disease), and the need for clinicians to recognise delirium superimposed on dementia.

A cure for dementia before the onset of symptoms would be remarkable, especially for some rarer young people who face a near-certain likelihood of developing one of the strongly inherited dementias.

But we DO need to face facts, Dementia Awareness Week or otherwise, surely? If we’re ‘curing’ dementia really by focusing on a handful of manageable subtypes such as familial Alzheimer’s disease only, can we ‘solve’ inequitable delayed discharges too for an increasing number facing Jeremy Hunt’s NHS?

 

 

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The term 'post diagnostic support' for dementia is as unconvincing it sounds

 

The term ‘post diagnostic support’, as applied to dementia, I feel is incredibly unconvincing. English dementia policy has entrenched itself in a position of the primacy of the diagnosis. I do not wish to rehearse yet again the numerous arguments for and against the timely diagnosis here.

In an ideal world, ideal for Big Pharma that is, you’d invest in an insurance package in the US., or you’d be a patient of the NHS, and, on your diagnosis of possible dementia, your general practitioner would prescribe you a “magic bullet”. The bullet might slow the progression of your dementia right down, or may even stop you getting definitive symptoms.

And there is quite a quaint faith in ‘cures’. You can’t as such ‘cure’ headaches or asthma. And the drugs which were trialled on healthy 30-40 year-olds as single interventions aren’t necessarily going to behave themselves in 60-70 year-olds with a number of other medical complaints receiving polypharmacy.

But the world is not ideal – the cuts in social care around the world are testament to that. If the numerous failures in orphan pharmacotherapy for Alzheimer’s disease is anything to go by, it might be wise not to repeat the same mistake yet further and expect a different result.

The diagnosis disclosure itself is not the simple imparting of information that ‘you have dementia’. It should be a chance for the person giving the diagnosis, whether a physician, GP, specialist nurse or otherwise, to explore the beliefs, concerns and expectations of the recipient of that diagnosis. And if necessary, it should be a chance for the person to have some counselling about the potential implications of the diagnosis.

The phenomenon of ‘nothing can be done’ has a number of repercussions for people. It can lead to a delay in seeking a diagnosis, and lead to a lack of engagement with the diagnosis once given.

It is also untrue.

A correct diagnosis of dementia could lead, perhaps, to the correct care and support mechanisms coming into action.

I have personally problems with the notion of ‘consumer choice’, but not because I am a protecter of the professions’ vested interests. Far from it.

I once asked Prof Bob Woods what he thought of ‘meaningful activities’. Prof Woods replied ‘better than meaningless activities, I suppose, Shibley?’

Likewise, it has to be, surely, the case that choice is meaningful too? Actual choice is scuppered by all of the social determinants of health – and in particular lack of money.

But I do not agree with an overly paternalistic, profession-driven, approach either. I think a person after a diagnosis of dementia should be actively making decisions about what’s best for him or her after diagnosis.

This might include appropriate housing as a personal home, or residential settings. Or it might include help with speech or swallowing from a speech or language therapist. Or it might include preventative strategies for medics for high blood pressure or high cholesterol. Or it might include occupational therapy intervention for assistive technology help, such as memory aids, not all of which is prohibitively expensive.

I think also the ‘enablement’ perspective also recognises that you may not be able to get a person to exactly where he or she was before, but allows for diversity, and allows for the existence of a person equally as valid, at least, as that pre-diagnosis.

Planning for the future also necessarily involves protection; and this could include protection over financial and legal affairs, such as power of attorney or budgets. The social care profession must have a seat at the table there.

I really do feel the term ‘post diagnostic support’ does a disservice to what should and could be happening beyond a diagnosis of dementia. This is evident in the output from some of current clinical leaders in dementia all too sadly.

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It's the diagnosis and research stupid, but don't forget about care

drugs

Anyone linked to the UK government would prefer you not to talk about the crisis in social care. This gets in the way of shimmering spin about current dementia press releases.

But we know that the patient experience of people with dementia and carers is often destroyed by delayed discharges. If your train is late, it’s inappropriate for you to be labelled ‘a platform blocker’. This government, like the previous one, is failing to get on top of this problem.

If you’d believe the grass is greener on the dementia diagnosis front you’d be wrong. People languishing without a formal diagnosis is not right. But if we want high quality prompt diagnoses we should be able to pay for them.

Jeremy Hunt mysteriously views dementia as the ‘jewel in his crown’, but in fact there is a shared ethos between the NHS and English dementia strategy. That is, a stench of the ‘something for nothing’ culture – like paying #juniordoctors to stretch their work to seven days for the same money.

The Dementia Discovery Fund, launched today at the Alzheimer’s Research UK conference in Manchester by Jane Ellison MP, will pay for the development of new drugs for dementia. The announcement is seek to confirm that some of the world’s largest pharmaceutical companies have joined forces to seek new treatments for a group of brain diseases affecting 850,000 people in the UK.

They include Biogen, GlaxoSmithKline, Johnson and Johnson, Lilly, Pfizer and Takeda. The giant firms have signed up with Alzheimer’s Research UK to form a ground-breaking public-private partnership.

This is highly reminiscent of the approach which was taken for the development of drugs for HIV. Some time ago, ater spending a few years laying a foundation to streamline clinical testing and drug development, leaders from the US Food and Drug Administration body (“FDA”) took their Critical Path Initiative (CPI) from concept to implementation.

There remained public concerns about drug safety, dangerous imports, and rising pharmaceutical costs, much like today here in the UK for dementia. But here the UK taxpayer is in effect helping to underwrite drug development costs for these blockbuster revenue companies. Whilst political leaders use the limp mantra ‘you shouldn’t have to choose between cure and care’, in effect the choice has been made. Care is on its knees.

The famous political saying from Carville is of course ‘it’s the economy stupid, but don’t forget about healthcare.’ With the current Government’s growing economy, there is little joy from the people who can deliver potentially high quality professional care – nurses and doctors – who are unanimously demoralised and destroyed by Jeremy Hunt and his colleagues, wherever they may be.

The shambolic state of the English dementia policy could not have been made clearer by the lack of discussion of care pathways and clinical specialist nurses in dementia. What resulted was a underwhelming appalling document known as the ‘Implementation Plan’ for Dementia 2020 from the Department of Health.

The fluffy ‘health MOTs’ for people in their 40s is not evidence based at all. It is the pipedream of a non-clinical policy wonk, wishing to ensnare the ‘worried well’ into the lare of the private insurance industry, as I describe here. Nobody is of course objecting to true professional health promotion, but there are limitations to promoting ‘brain health’ – in the same ways to improve a healthy leg has limitations for you dealing with a dislocated hip or fractured neck of femur.

The relative lack of substantial professional clinical input really shone through in many areas, such as the lack of discussion of co-morbidities. Many of the ideas are gimmicks which have been recycled ad infinitum in various guises. The aim had been to assess ‘the lessons learnt’ from the only ever English dementia strategy, “Living well with dementia”, in 2009, but clearly the Department of Health cannot even been bothered to do that, not wishing perhaps to scrutinise the appalling state of social care or the high number of inappropriate referrals to memory clinic.

Or maybe the Department of Health do not want to discuss why primary care is not well placed to deliver on dementia diagnosis, when that arm of the profession is suffering a recruitment crisis, overwhelmed by bureaucracy and regulation, and is relatively grossly underfunded.

If the rest of English dementia policy were in a fit state, then a Drug Discovery Fund would be something to shout about. But the fact that there were 101 spectacular failures in drug development for dementia between 1998 and 2012 is also a fact.

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You need to ask the right questions to get the right answers

Idea concept with row of light bulbs and glowing bulb
Idea concept with row of light bulbs and glowing bulb

I think the worst aspect of the term ‘innovation’ is the term itself. For me, it more often than not conjures images of gimmicks and the snake oil salesmen of these gimmicks.

But there’s a certainly a place for ways in which people can be motivated to take an interest in his or her own health. There needs to be, nonetheless, an informed debate; for example, a healthy “health check” is no guarantee that you won’t succumb to some malady within a few years time.

I’ve known people to run a full distance on a cardiac treadmill in a hospital, with no monitored changes in heart function, only to drop dead seconds later in the hospital car park.

Nonetheless, most definitions of innovations are quite broad, and are generally doing things differently or doing different things.

It’s often said by physicians that the vast majority of a reliable diagnosis can be taken from a good history of symptoms. That I believe to be supremely the case for dementia.

I am not going to bombard you with the predicted million people living with dementia in the UK, as quite frankly if it’s your mum living with dementia that should be good enough for you to take an interest.

The question, “Have you had trouble with your memory?”, is likely to engender a lot of false positive responses as a diagnostic screening tool for dementia. A better one would be possibly, “Have you had trouble with memory but feel that your mood has been quite good?” But even this question would not be ‘fool proof’ as people can live with both dementia and depression.

There is a good ‘push’ argument against supporting a status quo in the current approach to dementia. That is, it is overly reliant on a medication solution, when the vast majority of drug research work in this area has resulted in failure. This ‘promissory hope’, of “one last push”, is needed to keep the general public engaged with this mission, and certainly helps the surpluses and profits in the short term.

Indeed, many of the arguments for ‘barriers to innovation’ can cut both ways. For example, it might be the case that in these economic challenging the times the last thing you’d want to do is to take a massive punt on redesigning diagnostic care services for dementia. Or, on the other hand, you might take the view that there’s nothing to lose.

The need for innovations to be ethical and accountable has become increasingly important under the umbrella term ‘responsible innovation’. Not all dementia is Alzheimer’s disease, and yet we are led down the Alzheimer’s path continually by the media. If there were a ‘biomarker’ for Alzheimer’s disease which was very specific and sensitive, and inexpensive to get the results of, would this information help you?

The answer is possibly – but if this were coupled with a private insurance system, you could also find your insurance premiums going through the roof, even if you were to have forty years of healthy living ahead of you.

Certainly the more expensive the investigation doesn’t make it more fool-proof. I’ve known patients with a clear diagnosis of frontal dementia who’ve had plum normal investigations including state of the art MRI scans. And likewise people with radiological atrophy on MRI who don’t have dementia.

I see innovations in dementia as a tool in dementia diagnosis, support and care, but only if used responsibly. Otherwise more noise can be added to the signal, as was clearly the case for incentivising primary care to run case finding tests for dementia. The very predictable unintended consequences that the number of false positive diagnoses of dementia also shot up, although ignorance is possibly worse than fear.

Ask any corporate strategist about the future and he or she will always tell you some of it is about turning threats into opportunities. For me, if you cut through the shill and waffle, an intelligent way to redesigning dementia care isn’t a bad idea, even if I would not necessarily start from here.

 

 

 

This is the talk I will be giving for #WHIS16, the World Health Innovation Summit in Cumbria, on innovation as a societal response to dementia.

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

cake slice

In the words of Ian Dury and the Blockheads, there are indeed “reasons to be cheerful” about the English dementia strategy. We need a strategy, but we need to think about the imperative for “the cure” while appearing to neglect finer details of care. Furthermore, the actual quality, as well as quantity, of diagnosis merits scrutiny.

The need for a strategy

Our English dementia strategy has some key prongs from the clinical perspective – prevention, diagnosis, care, support, palliative care/end of life approaches and cure. How these components are balanced has practical implications for funding and resource allocation. Underpinning this is the need for high quality research, in both cure and care, qualitative and quantitative, non-molecular and molecular, and so on.

England currently does not have an up-to-date dementia strategy. The last ‘five year plan’ expired in 2014, and was supposed to be renewed. Baroness Sally Greengross, the previous chair of the All Party Parliamentary Group on dementia, made clear many times that the intention would be to recapitulate what had worked (or not) in the document from 2009 before progressing. This work, if indeed done, has never been published to the best of my constructive knowledge.

There are regional differences in national strategies, although the benefits of national plans have been described at great length elsewhere (an initiative spearheaded by the charity Alzheimer’s Disease International). Many feel that the first and only English strategy to be published by the Department of Health so far, entitled “Living well with dementia”, is very heavily weighted towards diagnosis and combating stigma through initiatives such as ‘dementia friendly communities’. This is in comparison, say, with the Australian jurisdiction which emphasises, it is said, primary care.

Karen Dening last year mentioned in the Dementia Congress in Telford that cooking dementia policy was ‘like cooking a cake’. Karen who is Director of Admiral Nursing for the leading charity Dementia UK, explained that making a cake required an understanding of the fine balance of ingredients. Too much of one ingredient (or too little) could, in theory, “spoil the cake”.

The importance of the cure but at what cost?

Indeed, the meme “care for today, cure for tomorrow” does merit scrutiny. Take ‘the cure bit’ for a start. In the same way that medicine might provide a cure for a type of cancer, such as an aggressive haematological condition, it might provide a cure for a type of dementia. In other words, in reality, the ultimate “cure for dementia” is likely to arrive in an incremental, piecemeal, gradual fashion for different types of dementia. And the unexpected might happen – for example, immunomodulators might find a ‘new market’ disruptively in the “fight against dementia”.

As such, you don’t ‘cure a headache’ with radical neurosurgery consequent upon sophisticated neuroimaging. You are likely to treat the symptom with a paracetamol. And the same logic goes for asthma and bronchodilators.

In the history of drug development for dementia, the debris of “repeated and costly failures” is a formidable one. But then again it is argued that no omelette was ever made without cracking eggs. It is said, for example, that between 1998 and 2012, there were 101 unsuccessful attempts to develop drugs for Alzheimer’s disease, with only three drugs gaining approval for treating symptoms of the disease.

In the phase before the theoretical obliteration of dementia in some future year, it is likely that care will also be required for tomorrow as well. This is because in someone who is being tried on an orphan drug for dementia a management strategy is likely to include also cognitive techniques, such as cognitive stimulation therapy, currently being examined for the NICE guidance on dementia to be published soon.

Nonetheless, any cures for dementia are to be welcomed not least because they offer hope. The worry, of course, is that there is a “zero sum gain”, in that if people are reaching for their pockets to fund research charities they are less inclined to fund social care for people living with dementia for today.

We have to talk about care

Even with talk of “precepts” from the Budget of last year, social care, not having been ringfenced since 2010, is still on its knees. Public health, which is supposed to deliver the risk mitigation strategy, for dementia has also been an unwise cost saving.

Social care is not essentially about bailing out the NHS in its ‘funding deficit’. It is as a profession concerned about enabling and protecting its client group. I feel few areas are as important as dementia for this.

Dementia, unlike cancer, has no specified “care pathways”. There are more than a hundred causes of dementia, depending on how you count them, and indeed every person with dementia is a unique individual. Integrated person-centred care pathways, and advance care planning especially in light of substantial comorbidities (involving of course carers), would do much to mitigate against the confusion and uncertainty which often accompanies the subsequent trek of a person with dementia through the maze of services.

The minimisation of the rôle of clinical specialist nurses, unlike cancer, is a deeply embarrassing one. The repercussions on the weaknesses in pursuant policy, including continuity of care in different care settings and delivery of palliative and end-of-life approaches, are glaringly obvious to clinicians currently working in dementia care today.

Prevention and seeking the diagnosis

The ‘healthy body, healthy mind’ campaign makes sense in a view that the prevalence of dementia in England  has been said to be falling. There are of course exceptions to every rule. We are all aware of people who’ve completed a healthy treadmill stress test for angina, without problem, only to fall dead in the car park.  Being educated, described as reducing your risk of dementia, did not stop Dame Iris Murdoch or Baroness Margaret Thatcher developing dementia. But progression also means preventing dementia progressing at a fast rate – in the future, maybe wearables and other technology might help in real time.

How a person or their closest ones seek a medical diagnosis for dementia was not straightforward, even before NHS England introduced its disastrous, and ultimately temporary, initiative to provide financial incentive for the diagnosis of dementia. A lot depends on the coping strategies of the people seeking diagnosis, as well as whether the benefit of a diagnosis is more beneficial than any ensuing stigma.

Many people report being “terrified” of then going to memory clinic, and a long wait is akin to ‘justice delayed is justice denied’. But an accurate diagnosis of dementia is important ultimately. General practitioners, already facing a bureaucratic and demand tsunami, may not have adequate resources or training necessarily to feel comfortable, although there is no reason why general practitioners cannot be also the ‘specialists’ making the diagnosis.

But likewise, people with unexplained symptoms, languishing without a diagnosis, is not on. People do deserve to know what medical diagnoses might apply to them. Physicians and other professionals would prefer people living with dementia not to be propelled into a crisis or move to residential setting involuntarily.

Furthermore, there is a school of thought that a correct diagnosis of dementia sums up the notion ‘knowledge is power’. Armed with the information, you can make reasonable adjustments just as for any physical disability, for example memory or visual aids, better signage around your accommodation. It gives you better bargaining power as an upholder of disability rights, as well as gives you specific opportunity to plan for the future, for example power of attorney or will, (on legal loss of capacity or ultimately death.)

Whilst there is a huge emphasis on diagnosis in current English dementia policy, there is consensus that the quality of how the actual diagnosis is closed could be improved in very many cases even now (see an excellent review here).

Conclusion

With so many vested interests involved, the cooking of this particular cake is bound to be complicated. But hopefully with time issues will become much clearer. This is ultimately for the benefit of persons with dementia and their closest ones.

[The author, Dr Shibley Rahman, of this blogpost (@dr_shibley) is an academic physician specialising in dementia. BBC Radio 4 will air a programme in the ‘File on 4′ series entitled “Has a drive to increase the diagnosis and find a cure been effective?’ at 20.00 on 23rd February 2016, presented by Deb Cohen (producer, Paul Grant). Details of this episode of File on 4 are on the BBC website here.]

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Babette's feast – and learning to care

For some time, Kate Swaffer had been suggesting to me that I should watch one of her favourite films ‘Babette’s Feast’.

In case you were unaware, one of Kate’s remarkable talents is high-end cuisine. Kate even ran a restaurant. I went past it in a mini van while I visited Adelaide suburbs earlier this year.

In case you haven’t yet seen this extraordinary, remarkable film, I do not wish to do any spoilers. I do need to tell you some basic details though – it involves Babette producing a meal for twelve people, consisting of top quality courses. She barely has any help, but does it all to budget. There is no money left at the end of the evening.

If you are desperate to know the plot of the film, please refer to the synopsis here.

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Health and social care often look to other sectors to look for best practice. For example, only this afternoon, Jeremy Hunt made reference to two hundred ‘avoidable deaths’ in the NHS every week; ‘the equivalent of an aeroplane’. Travelling by air, for example the use of checklists, has become a paradigm for patient safety.

I started watching ‘Babette’s Feast’ just after midnight this morning. It finished before 2 am. It is an amazing film. You’ll see why when you watch it.

But in passing I could not of course help but think about the parallels between preparing a complicated meal for guests with ‘dementia care’. I’ve always had problems with the term ‘dementia care’ as it can sound very robotic. I think it is a rather unemotional term for something at the heart of humanity – that is looking after someone.

Is it that ‘dementia care’ sounds transactional? I think this issue of carer versus care recipient is problematic if there is a problematic power imbalance.

Back to the dinner party.

It is no small achievement for Babette to provide a meal with a number of courses, such that all the dishes arrive on time. This is a big operational ask.

But it is highly significant that the dishes had personal resonance for the guests – often invoking memories. Such evocation of memories, further, could lead to a massive outpour of wellbeing.

The meals together can cause the guests to feel much more content, such that they enjoy each other’s companies – overall the group’s wellbeing is much enhanced.

Therefore, Babette’s feast is more than a set of dishes. It has personal resonance for the people involved – making it unique.

Babette neither profits or makes a loss on the meal (for reasons I don’t want to go into, otherwise it gives a key detail of the plot away.) The ‘outcome’ is that all the guests end up very happy.

In this current climate, it is all very easy to become enveloped in the ‘costs of caring’ and operationalising care. But this is of course to take away something very special which you can’t bottle.

Choice is heavily emphasised in English dementia policy. Thinking about it more, choice is an inevitable consideration when the discussion becomes preoccupied that accounting phenomenon known as ‘scarce resources’. It is a political drive which can lead to rationing.

On the other hand, how much would you value ‘mercy’ and ‘compassion’ at? It is easy to know the cost of many things, and the value of nothing; and this is particularly so in residential dementia care I feel.

This quote for me summarises for me much of a shift towards a much healthier way of thinking for all of us:

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A brilliant film.

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My final book on living with dementia: seeing the big picture

The picture above was taken at Ljubljana in Slovenia where we had the 25th Alzheimer Europe conference on the theme of “Dementia: Putting strategies and research into practice”.

Perhaps one of the most overused terms of the century is ‘breaking down the silo’. I don’t know enough about the engineering of silos to comment, thankfully.

I wish to explain in my blogpost here the overall direction of travel for my final book to do with dementia. Like the previous books, it will be heavily guided by the current literature from the brilliant people doing dementia research around the world. This research comes from a number of different angles as usual: looking for therapies for particular dementias, as well as research which is more geared towards economics, law, psychology, or cognitive neuroscience. And crucially the lived experiences – great, good, and bad.

My final book will be on enhancing health in dementia. Health is not simply the absence of illness and disease, and the books will resume the social model of disability not the biomedical model. For my book, I will need to draw on current evidence and guidelines particularly from the medicine and nursing professions nonetheless, but only as relevant to “the big picture”.

The topics will mark a clear departure from my previous books ‘Living well with dementia: the importance of the person and the environment’ and ‘Living better with dementia: good practice and innovation” in some areas. There can be no denying that persons living with dementia in residential homes and at home are also living as part of “dementia friendly communities”.

I am particularly mindful of imminent developments in quality of post diagnostic support from the Alzheimer’s Society, Dementia UK, Care England, Care Quality Commission and NHS England.

Book 1

Details here

Bk1

Book 2

Details here

Bk2

Prof Sube Banerjee, Professor for Dementia at Brighton and Sussex Medical School, has kindly agreed to write the main Foreword for my third book. Sube will be joined by Lisa Rodrigues, formerly chief executive of Sussex Foundation Partnership Trust. Joining both Sube and Lisa will be Lucy Frost, clinical nursing specialist and campaigner.

They in fact join a great line up of brilliant people who have contributed forewords to my previous two books: namely, Kate Swaffer, Chris Roberts, Beth Britton, Prof Facundo Manes, Prof John Hodges and Sally Marciano.

The first book was written around the NICE Quality Standard 30 on “Supporting people to live well with dementia”. It was written just after the hugely successful Prime Minister’s Dementia Challenge, which coincided with a strong leadership drive to do with dementia around the world including the G8 and G7 legacy events. Another major event was the one hosted by WHO and Alzheimer’s Disease International in Geneva in March 2015.

My first book had a bias towards English dementia policy. My second book took a much more holistic view, and indeed included two chapters on global dementia strategies and diversity. In my second book, I introduced the importance of integrated care and whole person care in ‘seeing the person, not the dementia’.

In my third book, I will need to come back to recent service innovations in England, including the ‘vanguards’ and the ‘new models of care’. There is however a tendency though to be attracted to the ‘new and exciting’, and not to give proper scrutiny to on-running threads in policy.

It is going to be necessary to refer both to the developments in England’s policy, including also developments in system redesigns offering better value and system leadership, in my third book. I would also like to draw on best practice from other countries, for example the Alzheimer Society of Ireland’s anti-stigma campaign, or Scotland’s ‘Focus on Dementia’. The lead given on person-centred dementia care by ALLIANCE Scotland will be reflected.

There are a number of workstreams in Europe which are particularly relevant to this third book. I wish to address fairly addressing the health needs of persons living with dementia, whether in care at home or in a residential setting (such as a care home or nursing home). I should like this book also to retain the strong human rights theme developed in book 2, with discussion of how the UN Convention on Rights for Persons with Disabilities could be applied for dementia around the world.

My hope for the third book, like the previous books, will be that the content will be quite generic. It is hoped that I will showcase some of the outstanding work that has recently begun to emerge in journals and at conferences. I myself have been to, and spoken at, a number of conferences in 2015. This has been enormously helpful for me in weighing up the ‘hot topics’ for my book.

Quality of care is the overriding theme of my book. In keeping with parity of esteem, I wish to address aspects of mental health in a wide context (e.g. insight, effects of sleep hygiene, anxiety and depression) on a par with physical health (e.g. infections, frailty, fall, fractures).

 

I introduced rehabilitation and recovery in book 2, and I wish to elaborate on this work in discussion of life story, reminiscence, cognitive stimulation therapy, and wider approaches.

I wish to look at the overused phrase ‘meaningful activities’, and to think about the place of these activities in both care at home and in residential homes.

I will look at the importance of relationships not only between residents and others to improve quality of life and care but also between staff to improve leadership and staff skills. I will also consider intimate relationships and sexuality, and spirituality.

All patients in all care settings in this jurisdiction are entitled to the best standards of NHS and social care, and certainly free from abuse and neglect. Intelligent use of technology is paramount for integrated care, including electronic health records and mitigation against prescribing errors. Many persons with dementia live with important co-morbidity, and technology is an important consideration in self-management.

For an integrated health and care system to work, persons with dementia should attend acute care only when necessary, care transitions should be facilitated as should patient flow and appropriate use of other healthcare settings. Careful case management including dementia advisors, dementia support workers and clinical nursing specialists, will be extremely important.

I intend to devote a chapter to end of life, particularly drawing on high quality research from palliative medicine. I wish to consider advance care planning, difficult conversations, anticipatory grief, reactions of residents, place of death, end of life in residential care, and dementia as a terminal disease.

Finally, it cannot be assumed that all persons living with dementia ultimately wish to live in a care home. Therefore, I will consider care at home, respite care, living alone with dementia; as well as possible future developments in extra care housing, smart homes, and the implications for the ‘aging in place’ policy strand.

I am hoping to cover this all in thirteen chapters in about 300 pages. I do not wish to promote any particular chain of care homes, but I would like to provide case studies of great practice. It is my intention to continue consulting as widely as possible. As regulation is a pervasive theme in this book, I intend to meet up with Andrea Sutcliffe from the Care Quality Commission. I also intend to liaise closely with people who have experienced the services in different regions of the UK including Wales, through, for example, voluntary sector organisations such as Age UK.

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

What follows is a massive disservice as I take a policy wonk approach to outing the problems in our current English policy. You would better served in spending your time listening to Andy Tysoe or Tommy Whitelaw, whose efforts on dementia are truly remarkable. It is truly a sad indictment of our society that the impetus behind the G8 dementia and global initiatives in dementia may have been more to do with public-private handouts to boost an ailing industry, rather than a sincere wish to people currently living with dementia to live better. The “Prime Minister’s Challenge on Dementia“, from the Department of Health, Cabinet Office, and the Prime Minister’s Office, was probably more disappointing for what it didn’t say rather than what it did say.

The central issue for many is what the point of diagnosing a dementia is, “if nothing can be done about it“.

This might explain, in part, the policy stance that prevention of dementia, ‘healthy body healthy mind’, is a worthy cause. And indeed the policy initiative from the Blackfriars Consensus is helpful. In terms of opportunities for ‘wealth creation’, it offers opportunity for open innovations, such as ‘wearable technology‘, to come light and to become marketed. The present NHS sometimes appears to be more fixated about how much of its work can be exported abroad to make a profit than the effects of cuts on patient safety. That social care spending is now on its knees, consequent upon it not being ringfenced, is however a threat to patient safety; and the added legal problem with residential homes in private care is that information about staffing can be withheld from freedom of information requests due to being ‘financial sensitive’. Similarly, recent initiatives on whistleblowing, such as the Francis Review, have concentrated on toxic cultures in the NHS rather than residential homes. The NHS and care sectors are still likely to have patient safety problems, given the trend in the size of the NHS litigation budget. There is an argument for zero hour contracts in the care sector offering ‘flexibility’, but such arguments must be proportionate. For many, however, zero hour contracts offer poor job security. Many caregivers are below the national minimum wage. Carers do not have rights under the present NHS constitution. Currently, the system is kept afloat through the valiant work of a huge army of unpaid family caregivers, who often worry themselves about the lack of support they are given in doing their job. There needs to be a much more coherent framework of the regulation of paid carers, many feel, however, for the minority of caregivers who seem inadequately trained in dementia including risk assessment.

As a person living with dementia needs care needs, there is no doubt that the needs of carers need to be given a priority in a new English dementia strategy. Carers clearly do need support, not least because caring is psychologically, emotionally, financially, and physically draining. A person with dementia at some stage will be involved in a decision as to whether to stay at home, or to move into a nursing home or care home, for example. Unmet medical needs such as incontinence, falls or declining mobility often underlie why some people with dementia go into residential care. The reason many feel that post-diagnostic care and support is inadequate is because it is perceived that the organisation of it is haphazard, with stakeholders not communicating with one another. The silos cannot go on, and it’s not on that there seems to be no-one in overall control of dementia policy, or even directly accountable for it. The lack of communication between residential care in the community and acute hospital trusts helps to explain the logjam of some people with dementia experiencing delayed discharges. It is all very well to talk about ‘parity of esteem‘, but such calls sound hollow with slashes in funding in social and mental health care. And health is so much more than health and social care – it’s all to do with how we are able to lead our lives, including education, housing and transport, for example – and that applies to people with dementia and caregivers too.

Many people with dementia, and friends and families, feel that they have maximal involvement with the medical profession at the beginning and end of their experiences with dementia, with the annual check up serving little function other than to repeat investigations to emphasise what a person with dementia cannot do any longer. This is completely wrong, if you wish to reframe the argument from what a ‘dementia patient costs’ to what ‘value a person with dementia brings’. Add on top of this that the National Health Service is fragmented and geared up to be a ‘repair’ service rather than ‘care’ service. Sure, repair is important, but often repair can be avoided altogether if there is better proactive case management.  It is utterly deplorable that, even when the contributions of Marie Curie and Macmillan specialist nurses are undisputed, that there has been scant attention to the clinical outcomes and financial benefits of a national network of clinical nursing specialists (as described recently in the HSJ). The “Admiral Nurses” scheme would have massive benefit if England were to invest appropriately here. I am extremely grateful to campaigners such as Beth Britton for keeping the flame of reasonableness alive.

There is no doubt that the Alzheimer’s Society have assumed a market dominance, and this is of course good for the sustainability of this sector, but they must be able to campaign effectively on shortcomings of government policy, whichever government that is, to act as a good corporate citizen with license to operate and license to lead. Such a dominance in providers is not in the best interest of persons using the NHS, especially if the voluntary sector is to participate in clinical contracts (e.g. cancer care), so a preferred model of care to offer the post-diagnostic support infrastructure for dementia is likely to be alliance contracting as successfully implemented in other jurisdictions (e.g. New Zealand). English health policy is heading towards collaboration rather than competition, so it is important that service provision in dementia also takes the lead; legislation in England needs to give voluntary sector providers some long term security, such that they can develop the capacity to expand to help the NHS form resilient communities. A person-centred approach would mitigate against lack of continuity of care. Persons living well with dementia have a multiplicity needs, requiring the ‘whole person’ approach, not least reflected in numerous comorbidities. Part of the problem we have had in English dementia policy is the overprescription of antipsychotics (see the Banerjee report 2009), but if we invested in a workforce trained in personhood (using techniques such as life story) and addressed problems in communication, particularly in residential care settings, we could mitigate against such a high need need for antipsychotics inappropriately prescribed for alleged agitation and aggression.

I feel it is crucial now we take the NHS on a radical transformation from a patient-oriented service to a person-oriented one.  Broadening the explanatory perspective on illness to include social and psychological factors has expanded the remit of medicine into the realm of ‘healthy’ bodies. Again, this has been particularly evident in general practice. The promotion of wellbeing must surely be seen as integral to that. Wellbeing in general measures ‘individuals’ subjective perceptions that life as a whole is good’, thus there is a strong link to the fulfilment of needs. A biopsychosocial perspective alone is not enough for a full understanding of the patient’s experience of illness, which depends on his or her particular life story; for example rheumatoid arthritis in the fingers might have a more profound effect on a concert pianist than a long jump expert. Even if a person is diagnosed with exactly the same condition or disability as someone else, what that means for those two people can be very different. A care and support plan should truly reflect the full range of individuals’ needs and goals, bringing together the knowledge and expertise of both the professional and the person, and it should give parity of esteem to mental and physical health needs. But the ‘no decision about me’ has tended towards vacuous sloganeering – but it is quite telling that the World Dementia Council were so slow to appoint someone living well with dementia, and even then appointed someone who was not democratically elected. While I think the actual appointee is brilliant, it is hard to see how one voice can ‘represent’ the views of millions of people living with dementia worldwide without proper resource allocation.

Part of the reason that many people in the general public believe that ‘nothing can be done about dementia’ is the relentless framing of dementia in the media as ‘dementia sufferers’ or ‘X has lost his battle against dementia’, and news of the latest game-changing “breakthrough”. The raison d”être of ‘Dementia Friends‘ was to combat stigma and prejudice through educating the general public about give basic facts about the dementias, but there has never been any systematic peer-reviewed publication on these basic campaigning facts were chosen, or how effective the organisers of ‘Dementia Friends’ have been in seeing their pledges materialise ‘turning community to action’. I think it is laudable to reframe the discussion of public services, and I do sympathise with the view of David Willetts in ‘Civic Conservativism’ predating Cameron’s antidote to the Big State as the “Big Society” (see for example his noteworthy Hugo Young lecture). But I do draw short shrift at ‘death by information session’, dressed up haphazardly as “training”, in other words making the State impoverished and malnourished of resources.

Tweet source

Training tweet

In my view the workforce does need to be properly training in dementia from those who have been adequately trained (I admire Andy Tysoe as he is properly trained.) For every pound spent on developing a cure for dementia that’s one pound deprived from frontline care. I am very much enthused about the need for visionary basic research in dementia. I myself made a groundbreaking discovery in the diagnosis of the behavioural frontal variant of frontotemporal dementia, which is currently in the Oxford Textbook of Medicine. But we have an English dementia strategy which has benefited from corporate capture, regulatory capture and Big Charity capture. For every pound spent on the NHS on a medication for dementia which does not slow progression and only has a limited time window for the treatment of symptoms (according to NICE), that’s one pound being deprived for a ‘social prescription‘ which could actually improve the quality of life of someone living with dementia (such as an iPod). Social prescribing offers a prompt means of providing an alternative to medication, which is a way to avoid physical disease and mental illness even.

Here we do need above high quality research into living well with dementia which offers comparatively, in my view, the best return on investment; see the brilliant research, for example, from the “Dementia” journal.

We do need to “face the facts”, and dishonest politicians should come clean (with or without the assistance of Big Charity with vested interests in promoting neuroscience); see:

“Scientific and financial challenges have meant that, between 1998 and 2012, there were 101 unsuccessful attempts to develop drugs for Alzheimer’s disease, with only three drugs gaining approval for treating symptoms of the disease, according to the study.

But please don’t get me wrong! I would be absolutely delighted if the medical profession were able to come up with a safe medication for Alzheimer’s disease which could cross the blood brain barrier (and a comparable treatment for the other 100 or so dementias).

There’s absolutely no doubt in my mind that communities can be “dementia supportive”, a term I prefer possibly to “dementia friendly”. The point here is that communities should be supportive as a matter of legal obligations, i.e. should not be unlawful in not providing reasonable adjustments under the Equality Act (as dementia is a disability), or living in a care home which do not meet basic human rights in dignity. Otherwise, it merely becomes a race to the bottom of shopkeepers wishing to establish their ‘dementia friendly’ credentials to make a fast buck. I am especially attracted to the idea that communities, if supportive of people living with dementia and caregivers, can mitigate against loneliness and isolation which can so easily follow the clinical diagnosis of dementia.

Ardent campaigner, Norman McNamara, living with diffuse lewy Body type dementia, himself warned against thinking ‘job done’ simply with a label, back in 2012:

“It was agreed with the PM (Can’t believe i am writing this) that we WILL NOT just put stickers up all around town/cities  announcing that we are Dementia friendly unless some sort of Dementia Aware training is in place first. Do you remember in the 80s when town called themselves “Nuclear free? AS IF!! It was a fiasco and we don’t want to go down that route!”! So please my friends remember, this is just the beginning , but what a beginning, and please remember this is in memory of all those lost already to this disease and those living with itt now, THE FIGHT GOES ON !!!”

Rights are indeed important in the NHS: it may, in certain circumstances, be more effective to exert ‘choice’ through the NHS Constitution in future for a right over where to die than through a personal budget.

And the actual diagnosis itself merits scrutiny. We should not be in a race to the bottom there, with high volume low quality diagnoses. For every wrong diagnosis, there is a victim of that diagnosis. Clinicians are regulated for this, but Big Charity is not. There has never been any systematic study into the harm done by an incorrect diagnosis, though presumably that would have been addressed in the impact assessment of the QOF ‘incentivising dementia diagnosis’ policy. I think primary care is overstretched, and I have a huge amount of personal admiration for GPs (my late father used to be a GP for about 30 years). But it would be unfair to overload them with making the diagnosis, even though the ‘diagnosis gap’ is well rehearsed elsewhere.

It is truly sad for me, as someone who has given a large part of my life to this, much of it in a voluntary capacity, that visions for dementia in England are more to do with individual egos and commercial aspirations of Big Charity than the actual needs of people living with dementia and caregivers. I do, however, look forward to hearing from people I respect, such as Agnes Houston or Kate Swaffer (who is about to go to Geneva to speak at the WHO/ADI conference on behalf of the Dementia Alliance International).

But otherwise… we really cannot go on like this.

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