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Is there more to influencing English dementia policy than putting up a poster?
Now is the time to influence the new English dementia strategy. It is critically important that the informed opinions of a diverse group of stakeholders are involved in framing this policy.
As with any strategy document, it will be hard to be in full control of all of the facts and evidence, but I feel it’s very important that the views of people living with dementia are taken into account. This is not just a case of ‘involving’ people living with dementia where possible. It’s a case of allowing people living with dementia to lead in framing the narrative. I am not going to suggest what these topics might be. I think, for people with more advanced dementia, it is going to be important to listen to the views of carers, both unpaid and paid. There is currently a huge policy problem that the needs of carers themselves are unaddressed. Carers need to be better supported in a more structured way.
There has also been a problem rumbling on years: that people who’ve received a diagnosis of dementia are not signposted to appropriate services. While the job description of ‘dementia adviser’ was mooted, I don’t feel this goes nearly enough. The ‘Dementia Challengers’ website, through amazing personal efforts from its one-person designer who has personal experience of this field, offers useful leads on support for making informed choices for living well with dementia. There is no escaping the overwhelming desire, also, to see a system of specialist nurses participating in a care system. Also, we are not making use of the substantial expertise of social work professionals. For issues such as advocacy over capacity and liberty, there are certain people with dementia who need to have equitable access to such resources.
I am a card-carrying signatory that each person living with dementia has an unique experience. I’ve even written a book on it. But it might help people with certain types of dementia to be reassured that there are clinicians with expertise in dementias, and can promote certain support groups (such as the excellent PPA Support Group). We need any diagnosis of dementia to be correct. I too often hear of people being given a diagnosis from somewhere, on the basis of a very scanty work-up. I understand the concerns that too many people are being denied of a correct diagnosis, but we must ensure that this part of the system is adequately resourced. It is possible there will be a breakthrough in drug development for the dementias in the near future. I wish the people working on this well. I am sure that they will not wish resources to be diverted disproportionately into this away from current care, or making it appear that the current living well of people with dementia is less of a priority?
The ‘dementia friendly communities’ policy plank is potentially fruitful. However, I think we should address how we hear a lot from corporates, but not much, in this jurisdiction, from professionals and practitioners who could be useful members of that community. Under the current legislative framework, both in domestic and international law, the rules of equality and human rights apply. These are not issues only for the ivory towers. They have direct relevance to the person with younger onset dementia who finds himself in an unfair dismissal situation. They also have relevance to the person in the badly run care home who feels (s) he is subject to “degrading treatment”. Access to the law has been a real setback for the current Government, as has been access to see your GP. These create the perfect storm for a ‘dementia unfriendly community’.
I am the last person to denigrate the efforts of the vast army of people putting up posters, signing petitions, or handing out leaflets, in the name of ‘dementia awareness’. There is a huge danger that these posters, petitions and leaflets send out a message of ‘mission accomplished’, if there is no follow up? But I am likewise a bit burnt that the fact that #G7dementia and “Prime Minister’s Dementia Challenge” appeared from nowhere, and had the effect of threatening plurality in the dementia third sector. I am concerned about this, and now is the time to make views known to the Baroness Sally Greengross, Chair of the All Party Parliamentary Group, Prof Alistair Burns, the clinical lead for dementia in England, and Prof Martin Rossor, lead for research for dementia for NIHR.
The selling of dementia-related service products bears an uncanny resemblance to the selling of securitised mortgage products
There is a need for high quality dementia services in the United Kingdom. There are about one million people living with dementia currently, and there are many services which might be relevant to them: like adequate signage to improve spatial navigation, good advocacy services, good advice for ‘dementia friendly wards’, good assistive technologies, and so on.
Some of them will be regulated, such as adaptations which are in fact ‘medical equipment’. And it is in a sense the buyers’ market, in that buyers can choose which product to go for. It is a booming economy.
Everyone likes a bandwagon. A bandwagon for dementia service products might be as lucrative as a bandwagon for securitised mortgage products, particularly if there’s a “buzz” somewhere.
For six years, the basic narrative – accepted by commentators and politicians – has been that securitisation, in essence a way of transforming one type of assets into another one, was the primary reason for the global financial meltdown, especially in the US sub prime market.
But the situation there is turning out to be more complicated than at first glance. US sub prime mortgage products aside, the performance of the securitisation market to date has actually been very creditable and, in some cases, better than other, more conventional investments.
Likewise, even before the Prime Minister’s Dementia Challenge, it is true that there were some very creditable offerings on dementia-friendly designs and assistive technologies.
There’s now a market for dementia services, like there was for securitised mortgage products. But when they go bust, there are three options for what to do next.
Firstly, one can blame Gordon Brown.
By this mean, the current Coalition government blamed Gordon Brown convincingly for ‘crashing the car’, when patently the economies suffered in other jurisdictions not due to Gordon Brown
If these dementia services products go bust, as such there will nothing that can be done, other than a market which has burnt out.
Secondly, one can blame the buyer.
The English law has a long tradition of ‘caveat emptor’, where the buyer is expected to do due diligence of what he or she is buying. There is an added complication here in that a failure of a duty of care by a middle man, such as an advisor, might be implicated if these products go bust. This can happen for securitised mortgage products, as well as dementia services products.
Thirdly, you can blame the regulator.
You could blame the financial regulator, or even abolish it (like what happened to the Financial Services Authority). In healthcare, likewise, you could simply abolish the regulator and start again hiving off parts into various functions. But this depends on how closely the regulator has been in promoting the product to begin with.
If a regulator has failed to do due diligence, the regulator will be blamed by people who have bought the product if the product goes bust.
In theory, the financial regulator can ‘stress test’ these products, to see how these financial products behave in a real environment. The options for the regulator means assimilating as much information about the product as possible.
In the case of financial services, this might include: does the product fulfil a legitimate need? In the dementia world, a dementia service product could make it easier to promote one of the 6Cs in nursing, or to prove your commitment to person-centred care; this is helpful for ticking boxes.
But again it’s a matter of due diligence; while regulatory capture can mean substantial competitive advantage for the seller of the dementia service product, the regulator is expected to show some understanding of the validity of the product.
So what can I conclude?
Nothing much. Just hope to hell that the luck doesn’t run out for the sellers of dodgy products; this might be as catastrophic for the dementia economy world, as the world macroeconomy.
Don’t sell dementia like a second rate used car salesman
I am often reminded of the piece of work which eventually won the Nobel Prize for Economics. It’s on the economics of ‘lemons’.
By this, I don’t mean the lemons you might see in Seville, or have a slice of for your gin and tonic. I’m talking about cars where the front looks normal, but the back is in fact soldered on. The car in question is in fact a rusty banger, and the car has been clocked.
“Living well with dementia” is an important policy strand. If done correctly, people realise that, while every person is unique with dementia, you become educated that there are medically various causes of dementia all with their own characteristics.
It’s sophisticated, as it needs an understanding of what ‘living well’, and why it might be of benefit for a person who has received a diagnosis of dementia. With the National Health Service operating a budget of millions of pounds, irrespective of whether you believe in a health market or not (and I do not), we need to know who the used car salesmen are.
“Living well with dementia” can be subject to the same sloganising as “No decision about me without me”. They seem to trip off the tongue, but commissioners need to be wary of any attempts at a quick fix. Mentoring for dementia has been around as an idea for decades. Some of us like shiny new products.
But people living with dementia are not a commodity. They are unique individuals like us, who happen to have been given a diagnosis of dementia. There’s absolutely no love lost between me and the medical profession, so I take with a pinch of salt those people who are ‘inspirational’ in healthcare, when problems with the healthcare industries and local economies include toxic suppression of whistleblowing and lack of a realistic duty of candour.
Innovation, like equality and diversity, have become marketing gimmicks in the National Health Service. Leadership has become another vacuous buzzword, when there are juniors shoving in catheters and pushing trolleys like no tomorrow in the current NHS.
But it’s a matter of authenticity. I will unfollow or even block people who are ‘NHS influencers’ who will ask me to retweet a last tweet. I am not so cheap so as to go round ferreting up the arses of people who want to be ‘recognised’.
There is a genuine problem with stigma and discrimination of people who have received a diagnosis of dementia. Due to a leading ‘innovation’ in the NHS which uses a tool which has been designed as a screening test for inpatients’ depression, there’s scope for some of these things ‘being done cheaper and more efficiently’ to produce a whole swathe of false diagnoses.
So, by all means, help with dementia. But don’t become a used car salesman, please.
Why I feel ‘parity of esteem’ for dementia needs cross-party consolidation
The five giants of Sir William Beveridge are all to do with the externalities in which a person finds himself. I agree with Lord Layard that the ‘sixth giant’ is indeed mental health, and really chimes with my definition of wellbeing as how a person is content with himself or herself and his or her own environment.
‘Dementia’ is a curious chimaera I feel: the physical condition affecting the brain has effects in mental functioning. And it has certainly been achievement of this current Government at least to attempt greater awareness of dementia through the ‘Dementia Friends’ initiative.
But why are you more likely to get a referral for a physical health problem than a mental health one?
It comes down to “parity”, and this has been an enduring strand of policy through Alan Johnson MP (Labour), Norman Lamb MP (Liberal Democrats) and Jeremy Hunt (Conservative).
In a nutshell, the definition of “parity” is as follows.
“Esteem” is essentially “worth”, or holding something as having the same value.
NICE recommended psychological treatment for depression and anxiety, and yet you’re much more likely to receive a prescription for antidepressants or antixoyltics than a referral to psychological therapies.
The “Improving Access to Psychological Therapie”s (IAPT) programme is a large-scale initiative that aims to greatly increase the availability of NICE recommended psychological treatment for depression and anxiety disorders within the National Health Service in England.
But the two are not disconconnected. It appears that, among people with a given physical illness, those who also have a mental illness cost the NHS significantly a year more – they go more often to A&E, and have more hospital appointments.
It is is well known, many NHS commissioners, when short of money, cut mental healthcare. Sue Bailey, the retiring president of the Royal College of Psychiatrists, called the situation a “car crash”, alluding to the fact that cuts in psychological therapy cause far more problems than they solve.
But the commissioning for such mental health services is a mess with a confused approach from CCGs, NHS England and local authorities.
NHS England have recently identified the importance of this issue in their document, “A call to action: achieving parity of esteem; transformative ideas for commissioners.”
The mental health of people with serious physical health problems is often overlooked. And likewise the physical health comorbidities of people living with dementia can be overlooked.
But who is going to lobby for this? There are practical difficulties if certain charities give the perception of being ‘too close’ to Government.
Developing a whole person care approach to health and social care and achieving parity between mental health and physical illness requires a fundamental change in the way services are commissioned.
I believe that people leading change will experience enormous resistance, not helped by the recent shrinking of actual funds for post-diagnostic support for people living with dementia, friends, family and carers.
Through a number of commissioning possibilities, though, it is possible to make sure all features of health and social care feature in a contract for living well with dementia. It’s possible to measure how successfully (or a not) a person living well with dementia is.
Such services will need to be designed by experts with experience including persons living with dementia and their communities, whatever their source of experience. This should be based on the best possible evidence base, and I have long felt that there should be ‘parity of esteem’ in research for wellbeing as there is for drugs which block or slow down the disease process of the dementias.
However, as services are re-tendered, or new ones considered, commissioners should consider how to put individuals at the centre of commissioning decisions, and to design integrated mental and physical health services. This may involve designing an ideal pathway from first principles. Focusing on outcomes can also help: by focusing on a set of integrated mental and physical health outcomes, commissioners can incentivise the development of integrated provision of the outcome of wellbeing.
I inherently feel that, whichever party comes into government on May 8th 2015, there is a golden opportunity there to put parity of esteem at the top of dementia diagnosis and support. It is a success that the notion appears in the Health and Social Care Act (2012), but, if this entire Act of parliament is repealed by a future Labour government, we need to ensure that this approach is consolidated in some other way on the statute books.
Despite ‘threats’ to the NHS budget, the potential cost savings are not insignificant, as well as the aim of optimising wellbeing which is extremely hard to argue against.
Could the “social impact bond” help to improve services in dementia care?
It’s impossible to ignore the occasional spate of reports of ‘care home scandals’, including Winterbourne View and Orchid View.
Whilst a direction of travel might be to advance people living ‘successfully’ as long as possible independently, there’ll be some people for whom a care home might be appropriate. There are particular aims of policy designed to support living well with dementia, such as combating loneliness and providing meaningful leisure activities, which can possibly be achieved through high quality care homes.
It’s pretty often that you hear of social care being “on its knees”, due to drastic chronic underfunding. A concern about attracting investment from the private sector is that this will help to accelerate the lack of financial resource allocation from the State. And yet this is the opposite to the argument of resources ‘leeching’ out of the public sector into the private sector.
In terms of the ‘business model’, there are concerns that, to maximise shareholder dividend, staff will not be incentivised to ‘care well’, if they are barely meeting the requirements of the national minimum wage. Whilst the employer emphasises ‘flexibility’ of zero hours contracts, for many such contracts are symbolic of a lack of commitment for sustained employment by the employer.
So the idea of bonds being used to prop up dementia care, currently one of the three big arms of the Prime Minister’s Dementia Challenge, has gained some momentum, for example here. Bonds are effectively “IOUs“, and concerns remain for them as in the private finance initiative – such as who actually benefits, the prolonged threat of penalty for not being able to meet your loan repayments, the issue of who decides the outcomes by which performance will be assessed, and who actually manages or controls the enterprise.
Social Impact Bonds (SIBs) are depicted as “a way of enabling innovation, creating flexible contracts around social outcomes and providing linked investment“. But for some, they are a vehicle for enabling ‘privatisation by stealth’.
The current Labour opposition officially is trying to distance itself from any mechanisms promoting the privatisation of the NHS, and yet it is known Chris Ham and Norman Lamb wish to publish a report imminently on the possible use of SIBs in policy under the auspices of the King’s Fund.
This is the title slide of Hazel Blears’ presentation for the Alzheimer’s Show on Friday.
And here is a section of her talk.
[apologies for the sound quality]
Hazel has a strong personal attachment to campaigning on dementia, and is particularly interested and influential in the direction of travel, not least in her rôle as Vice Chair of the All Party Parliamentary Group on dementia, a cross party group made up of MPs and Peers with an interest in dementia.
Andy Burnham MP, Shadow Secretary of State for Health, has made it clear that it is his firm and settled intention to repeal the Health and Social Care Act (2012). The current Prime Minister’s Dementia Challenge is to come to an end officially in March 2015.
Dementia UK set up some time ago its innovative ‘Admiral Nurses’ scheme, to provide specialist nurses who could help people with dementia and family carers to improve the quality of life of people with dementia and family carers.
Burnham has also let it be known that he intends to subsume social care within the NHS under the construct of ‘whole person care’. Whichever various formulations of ‘whole person care’ you look at, you tend to find a ‘care coordinator’ somewhere. The exact job description of the care coordinator, nor indeed which specialisms might be best suited to accomplish this rôle, is somewhat unclear presently.
But it is all too common to hear of people being diagnosed with dementia being ‘lost in the system’, sometimes for years without follow up.
A “care coordinator” might help to boost access to the following services: emotional support, enable short breaks for people with dementia and anyone in a caring role, promote nutritious meals, ensure medications are given on time, ensure the correct medications have been subscribed (for example avoiding antipsychotic medications in individuals who might be unsuited to these), advice about suitable housing (including downsizing), ensure all physical commodities are properly medically managed; and so the list goes on.
I feel it’s pretty likely there’ll be a ‘first mover advantage‘ effect for any entity which takes up this coordination rôle in dementia care. But the tension between this and the Opposition’s policy is palpable: one cannot talk of this entity being ‘the first to enter the market’, as many wish (and expect) Labour to abolish the internal market in health care.
Such a coordinating entity could well be a recipient of a SIB – but is this like the PFI of social care? PFI by and large has an incredibly negative press amongst members of the general public.
But on the other hand, is it vindictive to prevent a social enterprise from pitching from such a service? If that entity has the technical ‘know how’ to run operations nationally competently and at a reasonable price, would that be preferable to the State running such services when projects such as NHS IT and universal credit have not gone terribly well?
In our jurisdiction, private companies can hide easily being a corporate veil, and are for example currently not readily accountable through freedom of information legislation. This is despite numerous requests to Jeremy Hunt in parliament about parity in disclosure requirements from both private and public providers.
And the track record of some outsourcing companies in the private sector, it is said, has been terrible.
Jeremy Hunt and Norman Lamb are currently in control of NHS and care policy, but there might be a fundamental change in direction from the next Government.
Or there might not be.
If dementia is so much like cancer, does Hunt wish to shame GPs over performance there too?
There are many reasons why diagnosis rates of dementia in primary care might vary, irrespective of the skill of the primary care clinician.
Some groups of patients, particularly in certain ethnic classes, might be unwilling to seek a diagnosis; or might be dissuaded from seeking a diagnosis from family members or friends.
Some people may be genuinely frightened to seek a diagnosis of dementia, for fear for consequences such as losing a driving licence or losing friends.
In certain areas, such as with a local population with a high incidence of diabetes, high blood pressure or high cholesterol, there might be high rates of vascular dementias.
That’s why a ‘regional map‘ of diagnosis in rates for dementia is far too simplistic. The idea is that you might shop around to avoid those places were diagnosis rates are ‘unacceptably low’, but diagnosis rates may be low in certain places of their own accord.
Ultimately, you should wish for a national system for specialist services which includes a mechanism to confirm the diagnosis, and proper post-diagnosis support perhaps including specialist nurses.
The steady stream of meticulously choreographed public meetings for the #G8dementia and latterly #G7dementia have seen a battalion of comparisons made between dementia and cancer.
And indeed it’s been previously remarked upon that people are trying not to talk openly about dementia, in a similar way to how cancer used to be avoided as a conversation topic.
Our success in ‘treating cancer’ has come from improvements in treating various types of cancer, e.g. bone, blood, lung, brain.
To talk of a ‘cure for dementia’ is meaningless as there are about a hundred different types of dementia, with Alzheimer’s disease the most common worldwide.
Cancers, like dementias, have their own natural history. Indeed, primary care physicians have spotted cancers missed by hospital physicians.
A policy to ‘name and shame’ GPs ‘who miss cancer’ implies a fault of GPs, as if they are not competent enough to detect cancer. This is all too reminiscent of the very loud criticism by non clinicians of clinicians, complaining that they either do not know how to diagnosis dementia, or withhold the diagnosis deliberately.
Such a policy can so clearly have unintended consequences, not least contributing to the destruction of the morale of the workforce. At worst, GPs might refer all suspect cancers indiscriminately for specialist review, such that hospital medicine is flooded with new cases; so the sheer numbers of low probability cases might flood out high priority cases for management.
Without extra funding going into the NHS, it’s like putting a large bag of sugar into a small jam jar. The system is being set up to fail.
Likewise, the evidence underlying the claim that resources have been put into primary care or into specialist clinics which can confirm a likely diagnosis of dementia is far from clear. Ultimately, a diagnosis of dementia needs more than a few ten minute chats, and reflect substantially more than memory problems.
Specialists in dementia have access to facilities not easily available to primary care, namely EEG, MRI, CT, psychology, a lumbar puncture, for complicated cases of dementia. And there are some presentations of dementia which benefit from specialist hands, such as the progressive primary aphasia spectrum of cases.
Jeremy Hunt has proved convincingly that talk is cheap, but reassuringly the public are not falling for this scam.
I would like to leave the last word to a specialist in cancer (an ‘oncologist’), instead.
Why not have a global summit on living well with dementia?
Yesterday, the UK Department of Health plumbed to new low depths.
Actually, the week had started well. The Department’s 2014/5 corporate strategy which they had published included ageing and living well with dementia as a top priority.
The day before yesterday, the All Party Parliamentary Group on dementia had produced a thought provoking report which helped to map out a future landscape for English dementia policy.
This had included care coordinators, which I think would be very useful provided we get the appointment of such a rôle correct with people with the right skills, behaviours and experiences.
This included a proposal for “integrated care“. I personally feel we should attempt to introduce a large scale cultural transformation towards whole person care.
But why on earth nothing on specialist nurses as a critical rôle in the workforce?
Is it because the APPG report was hugely biased towards the Alzheimer’s Society not other large dementia charities such as Dementia UK?
Many of us are rightly concerned about the provision of specialist clinical nurses such as Admiral nurses.
But the summit yesterday #globaldementia was painfully bad in intellectual balance. The Department of Health Twitter account for the event was clearly manned by people who have little experience in the current policy of dementia in England.
Their “live blog” was as fascinating as watching a mouldy slice of Stilton get even more mouldy.
The number of tweets by members of the Department of Health far outweighed the tweets from elsewhere, relative to the sheer numbers in each of the two populations. I meanwhile continued to tweet a not inconsiderable number of tweets, including my own blogposts on language, whole person care, and social prescribing.
And this for me was the most telling slide of what has gone fundamentally wrong.
The use of toxic language to meet targets:
I have worked in research for dementia not continuously for seventeen years, including the top mark in my MBA in marketing.
I am quite sensitive to corporate marketing.
The drug companies need to come clean and to be honest.
They have had two decades of trying to produce a medication to slow progression of dementia. NICE is currently unable to recommend any anti-dementia drug that slows progression, albeit can improve symptoms for a few months.
The opportunity cost for this is incredible.
Both Cameron and Hunt produced unedifying language about dementia such as its effects on “humanity” and “horrible”, while unashamedly talking about the stigma of the wide ranging condition.
One of the key messages of “Dementia Friends“, a £2.4 million funded programme which appeared from nowhere in the current Government by the Department of Health and Social Care Fund, but “an Alzheimer’s Society initiative” (when not ambushed by the phrase “Public Health initiative”), is that “you can live well with dementia”.
Someone please tell this to Dr Dennis Gillings.
THE lowest point of yesterday was Gillings, telling Helga Rohrer, a passionate advocate and person living with dementia, about the need for ‘translationary research’ in response to a direct question about living well with dementia. Such research has been touted as finding a cure for dementia in the forthcoming decades.
He is the “World Dementia Envoy” for a panel which does not even have a direct patient or carer representative.
How completely offensive.
Martin Prince gave a fairly standard patter on an economic situation analysis of intervention after diagnosis. Well respected, he ignored completely the notion of any intervention on the wellbeing of a person with dementia.
But think this through. This would have involved an appreciation of how to measure the effect of an intervention of wellbeing in dementia. What type of dementia for example?
And do drugs affect wellbeing? The answer is actually by and large no.
There have been reported effects of memantine helping with wellbeing in dementia, presumably through affecting predominantly neuropsychiatric symptoms in certain patients (e.g. psychosis or aggression)?
But the drugs thus far have modest COGNITIVE effects. Prof Martin Rossor whom I respect wholly was right not to overinflate their importance, but right to draw attention on some value for some.
Yesterday was a well orchestrated cover, as a “legacy event” for the G8, for the current Government marketing for Pharma.
In the guise of the meme ‘private and public partnership”, please read “Pharma would like some of your State welfare benefits?”
The whole spectacle was unedifying.
It was an insult to people living with dementia.
It was an insult to a social care system which has been stripped of money during this current Government. Why don’t we have an ‘awareness’ campaign for that then?
Put quite simply, it was an obscene insult to many in the field, including academics in wellbeing.
It consolidated the notion of people with dementia being used for “tokenism” purposes.
Looking on the bright side, it was an outstanding example of “tokenism” and “non-participation”, compared to “citizen power”, as per Shelly Arnstein’s work.
I’ll continue blogging on my blog, which I increasingly see as blogging the other side of the story on dementia, while the others shill for Britain. Some unpaid.
Finally, I’ll leave the last word to @KateSwaffer, Consumer Champion for Alzheimer’s Australia, and a person living with dementia:
Time for a change in government.
Acknowledgements: It was Val Hudson who first alerted me to Arnstein’s work; this was a Twitter thread involving me, Val and John Ashton. Val has a longstanding and wide ranging background in dementia, including working for the late great Prof Sir Martin Roth, Emeritus Chair of Psychiatry at the University of Cambridge, inter alia.
A large scale cultural national transformation is needed to drive whole person care in dementia
I’ll be blunt. It’s my dream for the #NHS to run a proactive not reactive service, promoting the whole person living well with dementia.
The Australian jurisdiction have recently provided some helpful inroads here.
The narrative has changed from one of incessantly referring to people living with dementia as a ‘burden’ on the rest of society. For example, to push a sense of urgency that we have an ‘ageing population timebomb’, the cost of the ageing people with dementia flies completely in the face of other public health campaigns which emphasise, for example, “dementia is not a natural part of ageing”.
“The NHS as a whole and individual hospitals recognise that dementia is a significant, growing and costly problem for them” is the opening gambit of the Alzheimer’s Society “Counting the cost” report.
An easy to use online resource, Valuing People from Alzheimer’s Australia has been developed in collaboration with community aged care providers who have helpful in stablishing a person centred approach to service delivery.
Person centred care is a development to provide ervices provided in a way that is respectful of, and responsive to, the preferences, needs and values of people and those in the care and support network.
I cannot recommend this resource highly enough. The main source is here.
In fact, it summarises succinctly the conclusions I came to after my exploration of personhood in my book ‘Living well with dementia’. The late great Prof Tom Kitwood said of personhood, “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”.
If a Labour government is elected on May 8th 2015, the first necessary step is to legislate for the repeal of the Health and Social Care Act (2012) and to enact new legislation to allow for integrated packages provided they are justified by clinical outcome. For this to happen, it will be necessary for Labour to undergo a ‘conscious uncoupling’ from all the baggage of EU competition law. For this, it is essential also that the UK government is able to carve out provisions from the investor protection clauses and/or the rest of the EU-US free trade treaty (TTIP).
The “whole person care model” has become attractive to those who wish to break down silos between different physical health, mental health and social care “silos”. It has been worked up in various guises by various parties.
A helpful construct is provided in the document, “Healthcare for complex populations: the power of whole-person care models” originally published by Booz & Company in 2013.
A major problem with dementia care, however it is delivered, is that it is full of divisions: public vs private care, fragmented vs national care, competitive vs integrated models. Operating in silos can’t work because of the nature of the dementias: the mood and cognition of a person with dementia profoundly affects how they might interact with the outside world, for example perform activities in the outside world. And we know that taking part in leisure activities can promote a good quality of life.
Their model is, though, a useful starting point.
Dementia cannot be only addressed by the medical model. In fact, it is my sincere belief that it would be highly dangerous to put all your eggs in the physical health basket, without due attention to mental health or social care. For example, last week in Stockholm, the international conference on Parkinson’s disease, a condition typified by a resting tremor, rigidity and slowness of movement, which can progress to a dementia, often is found to have as heralding symptoms changes in cognition and mood.
So it’s pretty clear to me that we will have to embark on a system of multidisciplinary professionals who could all have a part to play in the wellbeing of a person with dementia, depending on his or her own stage in life, and ability or need to live independently. “Care coordinators” have traditionally been defined incredibly badly, but we do need such an identity to navigate people with dementia, and actors in the care and support network, through the maze.
“Care collaborators” in their construct are very wonkily articulated, like “pre-distribution”, but the concept is not stupid. In fact it is very good. One idea is that people with dementia could act as support as other people with dementia, for people on receiving a diagnosis of dementia. The rationale for this is that people living with long term conditions, such as for example recovery from alcoholism, often draw much support from other people living with other long term conditions, away from a medical model. There needs to be safeguards in the system to safeguard against a lot of unpaid goodwill (which currently exists in the system.)
Informatics would have a really helpful rôle here, being worked up in telecare and assistive technology. But even simple disruptions such as a person living with dementia at risk of falling from problems with spatial depth perception being able to ‘hot email’ a care coordinator about perceived problems could trigger, say, an early warning system. And with various agents in the provision of care being involved in differing extents it will be up to NHS England to work out how best to implement a single accountable tariff. Falls are just the sort of ‘outcome metric’ which could be used to determine whether this policy of ‘whole person care’ for people living with dementia is working. And, even though everyone ‘trots it out’, the performance on avoided hospital admissions could be put into the mixer. It’s already well recognised that people with dementia can become very disoriented in hospital, and, and despite the best efforts of those trying to improve the acute care pathway, people with dementia can often be better off away from hospital in the community. But it’s imperative that care in the community is not a second-rate service compared to secondary care, and proper resourcing of community whole person care is essential for this before any reconfiguration in acute hospital services.
But the private sector has become such a ‘bogey term’ after arguably the current Government overplayed their hand with the £3bn Act of parliament which turbo-boosted a transfer of resource allocation from the public to private sector. Any incoming government will have to be particularly sensitive to this, as this is a risk in strategy for the NHS.
In October 2005, Harold Sirkin, Perry Keenan and Alan Jackson published a highly influential article in the Harvard Business Review entitled “The hard side of change management“. Whilst much play has in fact been made of politicians having to be distant from running the NHS, a completely lubricous line of attack when it is alleged that Jeremy Hunt talks regularly to senior managers and regulators in the NHS, the benefits of clear political leadership from an incoming Labour government are clear.
Andy Burnham MP has already nailed his colours to the mast of ‘whole person care’ on various occasions, and it is clear that the success of this ambitious large scale transformation depends on clear leadership and teamwork from bright managers. Take for example the DICE criteria from Sirkin, Keenan and Jackson:
But this is perfectly possible from an incoming Government. The National Health Service has a chance to lead on something truly innovative, learning from the experience of other jurisdictions such as Australia and the USA.
As alluded to in the new resource from the Alzheimer’s Australia, this cultural change will require substantial ‘unfreezing’ from the current mindset for provision of care for people with dementia. It will require a change in explicit and implicit sources of knowledge and behaviours, and will need to be carefully brought about by learning from the successes and failures of pockets of implementation.
The whole project’s pretty high risk, but the rewards for people living with dementia, and members of the care and support network, are potentially vast. But it does require the implementation of a very clear vision.
[First posted on the 'Living well with dementia' blog]
Our ‘Dementia Friends’ session at BPP Law School on 1 December 2014
Chris Roberts (@mason4233), Jayne Goodrick (@JayneGoodrick) and I (@legalaware / @dementia_2014) will be running a ‘Dementia Friends’ information session .
This ‘Dementia Friends’ information session will be at 4 pm at BPP Law School, Holborn, London WC1N 4NY.
‘Dementia Friends’ is a Public Health England and Cabinet Office initiative, delivered by the Alzheimer’s Society.
It is likely that this will be held in the lecture theatre [though this is awaiting confirmation, as we need to coordinate arrangements with the course schedulers of the Law School.]
It is completely free of charge to attend.
It is an information session, containing some activities, about five key facts about dementia. It is not training. We are not experts. We are not counsellors.
People living with dementia can often be frightened to tell their friends and/or family that they have received a possible diagnosis of dementia. This initiative is designed to impart some basic information about what dementia is.
We are not delivering this as ‘a tick box exercise’ – only attend if you are genuinely interested.
There will be a booking sheet published soon on our Twitter feeds. Places will be allocated on a ‘first come, first served basis’.
We should like to thank Anne (BPP University Room Allocation Service), Prof Carl Lygo and Prof Peter Crisp (Professors of Law, CEO of BPP and Dean of the BPP Law School respectively), and Shahban Aziz (CEO of BPP Students) for local help in BPP in organising this session for us.
Proposed plan
Poster
Can you live well with dementia and suffer at the same time?
First, read Kate Swaffer’s poem. “Who’s suffering?”
When the media fires bullets of suffering in their magazines (quite literally), it is not clear who is the suffering by, what they’re suffering, how they’re suffering, when they’re suffering, and why they’re suffering.
Many readers suffer at this lack of clarity.
It’s pretty clear this narrative has got extremely distorted for no clear reason. What do the caring professions or the media have to gain by describing so much suffering?
And are people really suffering as purported?
Are there any randomised placebo-controlled drug trials where the relief of “suffering” in #dementia is a reported outcome?
Kate Swaffer (@KateSwaffer)’s poem conversely is a very helpful contribution, based on a personal experience of living well with a dementia.
“Rhetoric referring to Alzheimer’s disease as ‘the never ending funeral’ or ‘a slow unraveling of the self’ implies that diagnosed individuals and their families alike are victims of a dreaded disease.”
So comment Beard and colleagues.
“The fact that the words Alzheimer’s disease conjure up images of a hideous, debilitating condition demonstrates that an Alzheimer’s diagnosis can be both “a stigmatizing label and a sentence”. When depicted as a ‘living death’, Alzheimer’s can have countless social-psychological consequences for those diagnosed. Within a medical model, the relatives of persons with dementia are ascribed the role of ‘caregiver’ with a focus on the associated stressors or ‘burden’. Subsequently, health promotion efforts have historiiccally positioned family members as the ‘second’ or ‘hidden’ victims.”
Of course, this discussion is not confined to Alzheimer’s disease.
It is not uncommon for people who love people living with advanced dementia to have a miserable time, and suffer from that.
Alzheimer’s disease is the most common type of ‘dementia’, a disease of the brain. It’s not just about memory, although memory problems can be a common feature of Alzheimer’s disease early on in particular.
There is more to the person than the dementia. It’s possible to live well with a dementia. And dementia is not necessarily associated with ageing.
But some critics of ‘living well with dementia’ have attacked the concept saying it is trying to airbrush or sanitise suffering. I hope that this is not a widespread belief, as it is not true.
Across a number of jurisdictions, the word ‘sufferer’, like ‘victim’, is avoided in common parlance and academic papers when referring to people getting on with their own lives.
The term ‘live well with dementia’ is not indeed to enforce a degree of pleasantry on the lives of people. Contentment is not compulsory. But the term conveys a notion which is a pure and simple reaction to people being written off on the receipt of a diagnosis of dementia.
We owe much of the current drive in policy to ‘person centred care’ from the seminal work of the late great Prof Tom Kitwood on personhood. Persons living with dementia have been classified as “empty shells”, a label that may contribute to the development of paternalistic attitudes and behaviors toward care.
Kitwood suggested that people with dementia are often depersonalized and actively disempowered.
Research into the “self” in dementia is important for a number of reasons. It is important to understand how people with dementia experience their sense of self because this has implications for how people cope with the illness, how they relate to others, including friends, family, and health professionals, and what any types of intervention might be appropriate for them.
One person, interviewed by Wendy Hulko, described the experience as “hellish”.
But it turned out that this word was chosen partly out of word finding difficulties.
“Well, having um a difficulty coming out with the right words for example or phrases or um having difficulty with uh numbers and um dates, times, um having difficulty coming up with um, difficulty um, coming up with just a common expression uh, or um even words that are very frequently used by anyone without the disease and um having difficulty coming up with just ordinary expressions…”
Several of the participants dismissed the significance of having dementia, some focusing on the lack of impact it had on their lives. Several of the participants tolerated dementia, noting the inconvenience it caused and downplaying the negativity associated with it.
Despite extremely powerful national advocacy organisations founded over a quarter century ago in the United States and the United Kingdom, the voice of people with all forms of dementia has been surprisingly slow to emerge.
A recent exception to this has been the Dementia Alliance International.
The medical model has unintentionally forced a narrative in the media which does present people living with dementia in the positive light. Such ‘ringfencing’ of the person with dementia positions them as withdrawing from social life rather than considering how their social roles may have been withdrawn from them, which demotes them to ‘patient’ or ‘dementia sufferer’.
Such biomedical reductionism, arguably, can, therefore, create additional obstacles for diagnosed individuals and their families.
People with dementia, like all of us, undoubtedly have “rough spots” along an individualistic path of dementia, but the person is more important than the diagnosis as reflected in strategies for circumventing the rough spots.
There are typically personal, interactional, and environmental factors that caused them difficulties. Strategies included concrete activities, emotional responses, and environmental adaptations.
A number of devices can be used cognitive aids, made various modifications, garnered assistance from others’ engagement, akin to how people like me live with physical disability.
And often the language itself is intensely stigmatising.
Take for example this example by Dupuis and colleagues.
Such current language and discussion around “challenging behaviours” have the effect of blaming persons with dementia for behaviors and labeled persons as violent, aggressive, disruptive, challenging and so forth. This was hurtful and stigmatising and did not reflect the meanings of the actions of persons with dementia.
Conversely, it is quite often – and incredibly politically incorrect to say so – a failure by the care or support network to understand communication by a person with dementia amidst intense frustration.
Sarah Lamb notes at the beginning of this year that the current North American “successful ageing” movement offers a particular normative model of how to age well, one tied to specific notions of individualist personhood emphasising independence, productivity, self-maintenance, and the individual self as project.
However, Lamb concludes that the “successful ageing” narrative “might do well to come to better terms with conditions of human transience and decline, so that not all situations of dependence, debility and even mortality in late life will be viewed and experienced as “failures” in living well.”
This thought is bound to raise eyebrows.
An emerging political approach suggest that individuals with dementia are viewed as having transgressed “core cultural values—productivity, autonomy, self-control, cleanliness—and these failures damage the ‘victim’s’ status as an adult, and indeed, full humanity” (Herskovits, 1995: 153).
In articulating a “political” model of dementia, Susan M. Behuniak suggests that one is inviting very different meanings:
“everything from absolute control over the individual to a total lack of public policy, from an emphasis on individual rights to that of social responsibility, and from laws that draw absolute lines to those that accommodate shades of grey.”
Although dementia is not traditionally viewed as a power question but as a medical condition, power in its most traditional of formulations can be seen when debates arise over who should decide matters involving the individual with dementia.
This is, I feel, also an issue when we talk about a ‘carer’ or ‘support’ for a person with dementia. Whilst not as unsubtle as the word ‘sufferer’, there is an implicit power relationship there for me.
Chris Roberts [@mason4233], one of the @DementiaFriends, himself a card-carrying member of the ‘living well with dementia’ club has often remarked as follows:
So it is possible to suffer and live well with dementia.
But once you’ve met one person with dementia, you’ve met only one person with dementia.
But hold on.
Carly Findlay, like Chris and Kate, also puts it beautifully, this time writing from Melbourne about “ichthyosis“.
In her piece, “I get told I suffer… I don’t suffer.”
Ask others for their opinion if possible, or those closest to them.
It’s very important that no views are simply shouted down, particularly since it will be an important strand of the English dementia strategy (probably from next year.)
Further reading
Herskovits, E. (1995). Struggling over subjectivity: Debates about the ‘self