What happens after a diagnosis of dementia? My quick survey.

There’s been a lot of diagnosis on improving the diagnosis rates for dementia in primary care as a result of the Prime Minister’s Dementia Challenge.

This survey which you can take only once asks seven quick questions.

Each scenario is separate.

Choose the best option out of the choices given.

You can only choose one answer. There is no “correct” answer.

The questionnaire does not abruptly end. You need to scroll down to see beyond question 1.

https://www.surveymonkey.com/jsEmbed.aspx?sm=EUE7LKKlvnVqspas5Wn8lw_3d_3d

Create your free online surveys with SurveyMonkey , the world’s leading questionnaire tool.

Whole person care, not misleading campaigning, will be brilliant for dementia

I believe that whole person care, to be introduced by the next Labour government, will be brilliant for bringing together health and care professionals with persons with dementia, and carers and support workers. But we should also be extremely vigilant of dodgy presentation of evidence being used ‘in the name of’ campaigning for my pet subject, dementia, I feel.

We keep on being told that the ageing population is one reason why we can no longer afford the NHS.

The clinical syndrome of dementia, for which advanced age is a risk factor, has therefore taken on a special significance in this context. Health policy gurus and politicians are seemingly having to find increasingly elaborate ways to force their agendas on an unsuspecting public. “The Shock Doctrine: The Rise of Disaster Capitalism” (2007), penned by the Canadian author Naomi Klein, argues that libertarian free market policies have risen to prominence in some developed countries because of a strategy by some political leaders. These leaders deliberately exploit crises to push through controversial exploitative policies while citizens are too emotionally and physically distracted by these crises to mount an effective resistance. Crises are, though, useful instruments for bringing about change.

Within the timescale of this parliamentary term, the Prime Minister’s Dementia Challenge (launched in 2012) has seen a torrent of newspaper headlines with sensational memes. They invariably depict some sort of crisis in projected numbers of people with dementia, and have helped Big Pharma with the task of campaigning for increased funds to find ‘a cure for dementia’. The memes have largely had twangs of crises. For example, ‘dementia is the “next time bomb”‘ was an early news story from 7 May 2012. This messaging has continued consistently since, with the latest popular meme being “soaring numbers diagnosed with dementia“. Indeed, only recently with the arrival of the “Dementia UK (second edition) report” presented in a conference in Central London, a press release was published stating “Alzheimer’s Society calls for action as scale and cost of dementia soars”. But this messaging has caused utter confusion and resentment amongst leading academics and practitioners in dementia. The cumulative effect, instead, of such headlines and articles in public health has been to produce a feeling of ‘moral panic‘. As rightly pointed out by Dr Martin Brunet in “Pulse Magazine”, a well respected commentator on dementia policy in English primary care, recent evidence suggests rather that that the prevalence of dementia in over 65s in 2011 is lower than would have been expected. This “CFAS-II study” from Cambridge, which was published last year in the Lancet, is widely quoted, comprehensively peer-reviewed, and is extremely well known amongst people working in this field.

This is all incredibly self-defeating, as the “Prime Minister Dementia Challenge” was intended to bring greater awareness of the dementias amongst the general public not least to tackle the stigma faced by people living with dementia in their everyday lives. But you have to wonder what the intention of this approach is in the long term? The final report from the Commission on the Future of Health and Social Care in England (“Barker Commission”) was published on 4 September 2014. It discusses “the need for a new settlement for health and social care to provide a simpler pathway through the current maze of entitlements”. Labour intends to introduce ‘whole person care’ in the next parliamentary term, and it could be that this “scorched earth” approach for dementia has served a useful function. “Whole person care” is their new “big idea“. The Barker Commission recommends moving to a single, ring-fenced budget for the NHS and social care, with a single commissioner for local services.

On page 9 of their final report, the ‘ultimate star prize’ is described, the personal budget:

“Personal budgets, and care in hospital and out of it, would be provided from a single, ring-fenced budget. There would be one budget and one commissioner for individuals and their families to deal with, in place of health, social care and, in the case of those aged over 65, the Department for Work and Pensions. Commissioners would be freed to acquire care designed around an individual’s need for support and health care, largely dissolving the current definitions of what is a health need and what is a care requirement.”

And this of course is nothing new: it has been in gestation for quite some time. I myself, in fact, wrote about personal budgets for ‘Our NHS’ in my piece ‘Shop til you drop?’ on 4 September 2013. It is said that Andy Burnham MP, Shadow State of Secretary of Health, “welcomes the Barker Commission“, but one wonders whether he wishes openly to support the more unsavoury parts. Labour is desperately keen to introduce its policy changes on integrated care, without them being seen as another “top down reorganisation”. Any public resistance to their flagship policy will be political dynamite. Labour is instead currently campaigning on an anti-marketisation and anti-privatisation slate, and has pledged to repeal the highly toxic Health and Social Care Act (2012) (“the Act”).

One significant part of this repeal will be the abolition of “section 75” and its associated regulations, which introduced competitive tendering in commissioning as the default option for NHS procurement. Nevertheless significant faultines in policy, described elegantly by Prof Calum Paton in his pamphlet “At what cost? Paying the price for the market in the English NHS” for the Centre for Health and Policy Interest (February 2013), still exist. They also are at danger of persisting, even if Labour triumphantly repeals the Act. There is a danger that unless these other pro-marketisation strands are addressed first, such as the purchaser-provider split, the “whole person care” policy will become engulfed in an intensely neoliberal direction. The counterfoil to this from Labour would presumably be that whole person care does not require a market in the first place. For this, clearly, Labour must not inflict personal budgets. A further big concern of mine is simple: not only will current scientific research into dementia have been completely misrepresented in the popular press, but also the field of dementia will be used to provide the raison d’être for yet another upheaval in service change.

And that upheaval could witness yet another change from the founding principles of the NHS. It could also be one too many.

The Barker Commission is helpful, but regulatory capture is an obstacle for dementia

 

I welcome the hard work from the Barker Commission at the King’s Fund taking yet another look at how the health and social care systems can be brought together.

I agree that the continuation of this would be to reinforce a somewhat historical relic, when the evidence in my own field dementia is that the silos of care are indeed unhelpful in our direction of travel.

Our direction of travel in dementia is to move away from someone somewhere prescribing an ‘anti-dementia drug’ such as a cholinesterase inhibitor which has a limited time window for its effect on symptoms in dementia (and no robust evidence for slowing disease progression).

And the direction of travel is to move towards to thinking how to improve the wellbeing of a person with dementia. A person with dementia only becomes a patient when he or she is ill, and the wish of the services I feel will be to try to look after a person long before he or she has a medical crisis.

Too often the debate about the fusion of health and social care system has been entrenched in the all important debate about merging a universal and means-tested system. I do not wish to deny that.

But on the other hand, it would, I am sure, for a dream to be realised that the National Health Service could look after the health of a citizen in a national way, rather than for the needs of a person to be ‘dealt with’ in a piecemeal, fragmented, way, where profit before people may be an overriding principle.

For me, personhood in medicine and social care is about understanding that person, the person’s past, present, and future, and in relation to the environment and community.

This means that there will need to be some retraining of the workforce and reconfiguration of the health and social care systems, but there should be intelligent kindness to a beleaguered workforce part of which has just had to cope with a £2 bn reorganisation through the Health and Social Care Act (2012).

Too often the focus for a person who has received a diagnosis of dementia is on the correct pill to prescribe.  But clearly this is not good enough.

I am told all the time that what people want is some idea about the nature of their condition, how it might progress, what adaptations to their home might be necessary, what benefits might be available, what legal advice they can get ahead of the crucial time when mental capacity is lost, how the community will help if at all (for example banks), or how the environment can help (good signage if people are prone to navigation problems).

I do not wish to take the wind out of the sails of the important, valuable work by my medical colleagues in thinking about what factors might prevent dementia (e.g. intense social networks, exercise, certain foods), nor the search for medications which can interfere with the progressive biology of the conditions.

But people living in the here and now wish a practical, joined up solution in health and social care system, where information is freely shared in a necessary and proportionate way, mitigating for risks of sharing of personal information.

There are a number of obstacles to making this happen, but there is no doubt for me that ‘parity of esteem’ is a crucial factor. We have got to get out of the mentality of thinking of mental health and social care as unimportant compared to medical care.

This is a longstanding problem in policy, and there has been important progress in this. However, if we are to go down the route of making each pound count in the current NHS spend, in the avoidance of extra taxes or copayments, we should be bold enough to think of whether an adapted phone with big buttons and redials is  more cost-effective than a pill for improving the quality of life of a person with early Alzheimer’s disease.

In the early stages of Alzheimer’s disease, the most common type of dementia worldwide, people living with dementia typically might experience problems particularly in short term memory and learning.

I think the regulatory capture of bodies such as NICE, and medical regulators, will help to perpetuate the medical approach to dementia.

But if we had unified regulators, including one which could directly compare the cost effectiveness of a pill with that, say, of advocacy advice, with a view to improving the outcome of a quality of life of that person, rather than the effect on two points on a memory screening instrument, this would be progress.

This will require political nerve, and leadership from people in the field. I hope all concerned are up for the challenge. But the Barker Commission is an useful start, I think.

Identifying people who “might” have dementia is simply not good enough

Imagine you are a 45 year old lady who goes to see a GP with a lump on the breast.

Just pretend the lump on the breast is not a sinister cancer, but a small harmless fatty collection of fatty cells called a lipoma.

Would you appreciate that GP labelling you as having breast cancer because of a Government target to improve the number of diagnoses of breast cancer nationally?

Whilst it might be good for that GP ‘hitting the target’, the GP is certainly ‘missing the point’, as he or she has inadvertently given the patient much distress through the misdiagnosis.

In medicine of course you do not necessarily need to progress to a surgical biopsy to lead to a confident diagnosis. It happens that it is relatively most unusual for a diagnosis of dementia to warrant a neurosurgical brain biopsy unless it might be for a rarer condition such as Variant Creutzfeld Jacob, or a potentially treatable cerebral vasculitis (inflammation of the brain).

It is known that a sizeable minority of people we think have dementia do not actually turn out to have dementia on post mortem. Indeed, according to Professor Seth Love? Department of Neuropathology, University of Bristol Institute of Clinical Neurosciences, “In most published series, the accuracy of clinical diagnosis of the different diseases that cause dementia is of the order of 70–80%.”

The definitive diagnosis of dementia is achieved post mortem.

Whilst it is laudable that there is a strong drive to improve the diagnosis of rate of dementia in England, it is absolutely imperative that this diagnosis should be reliable. Otherwise the scenario arises where a 85 year-old man who lives on his own, recently widowed, suffering from profound clinical depression can inadvertently get mislabelled as having a dementia, and this diagnosis in itself makes him even more depressed.

In recent years, large corporate-acting charities have been largely responsible for touting the concept of identifying people ‘before they have the disease’, for example overweight people who are likely to develop type II diabetes. Likewise, in dementia, professionals have received massive pressure from non-professionals for finding that ‘pot of gold’ of people who most likely might develop dementia. Despite much obfuscation and smoke and mirrors, it is known reliably now that the ‘mild cognitive impairment’, of ‘minor’ dementia-like symptoms, is not that pot of gold, as many individuals with this condition never go onto develop dementia.

But having a roadside MOT in primary care has been argument popularised by large charities and politicians who have been successfully lobbied by them. Without adequate resources going into service provision or training of people in the service, this approach runs the risk of creating an unprecedented demand for people who are in fact ‘worried well’.

Robert Aronowitz (2009) argues that risk of disease and actually having the disease have become conflated.

He uses as an example two people are treated largely the same as part of a ‘breast cancer continuum’ despite having different backgrounds.

“Imagine two women, one who is suffering from breast cancer and the second, “merely” at risk for the disease. The first woman is fifty-eight years old. Two years earlier, she detected a lump in her left breast. After an aspiration biopsy revealed cancerous cells, she had a lumpectomy and removal of lymph nodes in her armpit (none of which contained cancer), followed by a course of local radiation and then six months of chemotherapy. After this acute treatment, she was put on a five-year course of the “anti-estrogen” Tamoxifen. She now closely follows developments in breast cancer. At the moment, she is concerned about whether to start another kind of hormonal therapy after her course of Tamoxifen ends and whether she should begin getting screening breast MRIs and/or more frequent mammography. For these and other questions, she frequently searches the web and attends meetings of breast cancer survivor and advocacy groups.”

“The second woman also is fifty-eight years old. She took birth control pills during her twenties, had her first child at age thirty-four, and, at the urging of her gynecologist, took supplementary estrogen pills starting at age fifty because of menopausal symptoms and to prevent heart disease and osteoporosis. A few years later her doctor told her to stop taking these pills because new medical evidence had conclusively shown that their risks—especially an increased risk of developing breast cancer—outweighed their putative benefits. Since age forty, she has been getting annual mammograms. Four years ago, she had an abnormal mammogram, which led to an aspiration biopsy that did not show cancer. Fearful of developing breast cancer, she is attentive to media reports and periodically browses the Internet for new information on cancer prevention. She has seen direct-to-consumer advertisements for Tamoxifen as a preventive measure for women at high risk of breast cancer. She understands that she has multiple risk factors for breast cancer, such as being middle-aged, being postmenopausal, having had her first child after thirty, having earlier used hormone replacement therapy, and having a history of a benign breast biopsy. She has sought advice from friends, doctors, and breast cancer advocacy groups about whether to take Tamoxifen and/or to find other means of reducing her risk of breast cancer.”

“At present, the first woman does not experience any symptoms of cancer but nonetheless undergoes intensive surveillance, has concerns about the long-term effects of previous treatments, and faces the future with caution. The experience of the second women is not very different. She may well decide to take Tamoxifen to prevent breast cancer. Like the first woman, she undergoes frequent surveillance and faces the future with caution. Both women face an array of similar choices and seek guidance in similar places. They share fears for the future, feelings of randomness and uncertainty, and pressures for self-surveillance. Both seek ways to regain a sense of control and face difficult decisions about preventive treatment and consumption. They are part of a larger breast cancer continuum, both in how scientists understand breast cancer and as a mobilized group for advocacy, fund-raising, and awareness (Klawiter 2002).”

In dementia, people who might be ‘at risk’ are those with strong genetic risk factors, or have a particular constellation of risk factors (hypothetically food intake low in zinc or high in cholesterol etc.) Industries allied to medicine would love to open up new markets by finding these people and offering them treatments early on. However, the drugs currently used to treat Alzheimer’s disease only impact on symptoms for some for a short while, and there is no consistent robust evidence that they slow down the disease course in humans.

In October 2014, I will be presenting data in the Alzheimer’s Europe conference in Glasgow about how precise identification of people most likely to develop dementia will lead those people to have insurance premiums which go through the roof, in a private insurance system, compared to a system where we all pool risk in the National Health Service.

I blogged on this study originally here.

The direction of travel for dementia with influences from private industry is a malign one. It consists of actively seeking out people are who are yet to develop dementia at the risk of completely ignoring the needs of the current cohort of people trying to live well with dementia. The pharmaceutical companies have been spectacular in the minimisation of failures over the last few decades in therapeutic treatment of dementia, and the current case finding approach in the English national health service has the potential to produce as much distress as much benefit.

But people have been warning about major fault lines in our dementia policy, correctly, for some time. See, for example, the excellent work by Margaret McCartney and Martin Brunet.

We can’t go on like this. Identifying people who “might” have dementia is simply not good enough. A properly funded National Health Service, where we are all “in it together”, where the concerns of professionals are listened to as well as the spokesmen of the new ‘dementia economy’, is a necessary start. Besides, the service for post-diagnostic support for those individuals who have been correctly identified as having a dementia needs to be far better resourced and organised so that people don’t feel they are being sent from pillar to post.

Whole person care is important in dementia. It should not be used for backdoor privatisation though.

“No matter how busy you are, you must take time to make the other person feel important.” -Mary Kay Ash

People living with dementia are generally not kept ‘in the loop’ about major decisions in the running of their health and social care services.

Whereas some politicians clearly see some capital in promoting dementia, it is hard to distinguish whether this is a genuine interest in dementia or a need to act as a broker for the pharmaceutical multinationals.

Likewise, ‘whole person care’ has all the makings of a great slogan, raising expectations beyond a reality. The concept is, irrespective of funding mechanisms in various jurisdictions, is that you see beyond a list of clinical diagnoses.

You ‘take notice’ of a person when they’re not ill; this has become a very potent concept with realisation that many people live with conditions but are not symptomatic of any illness. And more than ‘taking notice’, you actively help with issues that can help with wellbeing (such as lifestyle, advice about enforcement of legal rights, good quality housing, access to appropriate benefits, proper design of the environment.)

My working definition of ‘personhood’ is somewhat more basic than that of Carl Jung and Tom Kitwood, whose feet I should never wish to tread on intellectually. But my definition is simply that any person living well is at ease with his or her own past, present and future, and his or her environment including community.

In my view, therefore, it is refutable that there are sources of expertise for whole person care outside the medical profession, including unpaid carers, nurses, occupational therapists, physiotherapists and speech and language t harpists, as well as other persons with dementia.

Health and social care in England currently feels like fragmented different worlds, with a complete lack of communication between them. The lack of continuity of care leads to operational problems in offering health and social care. And if you reduce people to a list of diagnoses, you ignore the past of that person.

For example, a concert pianist might have rather different views about developing rheumatoid disease in his fingers than a building site construction worker has about developing the same disease in his.

What is driving the cost of the NHS budget in England, however, in England is technology not the ageing population; half of England’s current NHS budget goes to people below the age of 65 (Iliffe and Manthorpe, 2014).

There is an important how it could be delivered. An anticipated problem is that how the ‘integrator’ will include services including the private sector as well as possibly community care units; in this rôle the integrator ends up subcontracting services, potentially subverting the original ethos of the CCG process. This is a recipe for fast tracking resources away from the State to the private sector, highly dependent on corporates acting like ‘good citizens’.

Certainly, electronic patient records shared between entities would help.

But there is a temptation, and indeed danger, that ‘whole person care’ becomes a wish list for multinational corporations; e.g. “big is best” and implementation of massive IT projects. Focusing on a person’s beliefs, concerns and expectations, however, has been done successfully for decades by many family doctors, who have been subject to the same principles of regulation over confidentiality and disclosure as relevant to IT systems. By this I mean family doctors who spent ages talking to persons and their families in various environments such as home visits, rather than some doctors in modern general practice guillotined by the seven minute time slot.

The current UK Labour opposition is wishing to implement ‘whole person care’ in its next government, and it of course it remains to be seen whether they will be given a mandate for doing so.

But, if so, policy has a delicate balance to run between recognising specialist clinical care in dementia, e.g. through Admiral nurses, in England, and not creating new “silos”, e.g. whole person care nurses in dementia.

Creation of new silos from management and management consultants, apart from all else, encourages insurance-based funding mechanisms for single diseases rather than mechanisms which encourage fair treatment of the whole person in an equitable way.

The strength about the ‘whole person care’ construct is that persons have their physical health, social care and mental health needs considered in the round, with an understanding that comorbities can act both ways: physical illness can cause mental illness, and vice versa.

Whilst it might seem like an experiment in England, and could not have come at a worse time for the NHS with campaigners feeling that changes in health policy are essentially a rouse for backdoor privatisation, the approach of ‘whole person care’ is particularly relevant to dementia, and other jurisdictions, for example California, have already made good progress with it.

Time for a new regeneration. The New Secretary of State for Dementia.

Ed Miliband looks a bit awkward eating a bacon sarnie, or simply looks a bit “weird”. This man doesn’t look like your next Prime Minister?

But switch back into the reality. A cosmetic reshuffle where the present Coalition had to ditch a Secretary of State more toxic than nuclear waste from Sellafield to transport in a catwalk of tokenistic young hopefuls, “governing for a modern Britain”.

And engage a bit with my reality: where English law centres have been decimated, nobody is feeling particularly “better off” due to the cost of living crisis, GPs have been pilloried for being “coasters”, criminal barristers have gone on strike, or you can’t get your passport on time.

Whisper it quietly, and nobody wants to admit it, that despite all the concerns that Labour will front another set of middle-class neoliberal policies, Labour is in fact going to walk it on May 8th 2015 as the new UK government.

This will obviously be quite a shock to the system, and you can already feel the Civil Service behind the scenes mentally preparing themselves for a change in flavour for the dementia policy.

The current dementia policy had “Nudge” fingerprints all over it. “Customer facing” corporates could become dementia friendly so as to allow market forces to gain competitive advantage for being ‘friendly’ to customers living with dementia.

The Alzheimer’s Society got thrust into the limelight with the Prime Minister’s Dementia Challenge, ably supported by Alzheimer Research UK, to offer the perfect package for raising awareness about dementia and offering hope for treatment through basic research. This private-public partnership was set up for optimal rent seeking behaviour, with the pill sugared with the trite and pathetic slogan, “care for today, and cure for tomorrow.”

Except the problem was that they were unable to become critical lobbying organisations against this Government, as social care cuts hit and dementia care went down the pan. Dementia UK hardly got a change to get a look in, and it looked as if a policy of specialist nurses (such as Admiral nurses) would get consigned to history. They are, after all, not mentioned in the most recent All Party Parliamentary Group report on dementia.

It is widely expected that Labour’s NHS policy will be strongly frontloaded with a promise of equality, which the last Labour government only just managed to get to the statute books. Insiders reckon that this policy will be frontloaded with an election pledge with equality as a strong theme.

In the last few years, it has become recognised that caregivers feel totally unsupported, people get taken from pillar to post in a fragmented, disorganised system for dementia with no overall coordinator, and there are vast chasms between the NHS and social care treatment of dementia.

The next Government therefore is well known to be getting ready for ‘whole person care’, and it now seems likely that the new Secretary of State for Health and Care under a new government will have to deliver this under existing structures. This will clearly require local authorities and national organisations to work to nationally acceptable outcomes for health and wellbeing through empowered Health and Wellbeing Boards. This will help to mitigate against the rather piecemeal patchwork for commissioning of dementia where contracts tend to be given out to your friends rather than the quality of work. Health and Wellbeing Boards are best placed to understand wellbeing as an outcome (which can become missed in research strategies of large corporate-like charities which focus on care, cure and prevention).

And the switch in emphasis from aspirational friendly to a legal equality footing is highly significant. The new policy for dementia under the new Secretary of State will be delivering what people living with dementia have long sought: not “extra favours”, but just to be able to given equal chances as others. Environments will have signage as reasonable adjustments for the cognitive disabilities of people living with dementia in the community under the force of law, rather than leaving up to the whim of a corporate to think about with with the guidance of a fundraising-centred charity to implement.

With the end of the Prime Minister’s Dementia Challenge in March 2015, which has been highly successful in places in delivering ‘dementia friendly communities’, a commitment to improved diagnosis rates and improved research, it is hoped that the next government will be able to take the baton without any problems. It will be quite a public ‘regeneration’ from Hunt to Burnham, but one which many people are looking forward to.

Could the “social impact bond” help to improve services in dementia care?

This blogpost first appeared on the ‘Living well with dementia’ blog yesterday.

 

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.

Dementia care in the whole person care age

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.

 

 

@legalaware

 

[First posted on the ‘Living well with dementia‘ blog]

The five core messages of ‘Dementia Friends’ are consistent with the current literature

I first posted this blogpost on my ‘Living well with dementia‘ blog.

“Dementia Friends” is an initiative from the Alzheimer’s Society and Public Health England to raise awareness of the dementias amongst the general public.

Ideally, at the end of a ‘Dementia Friends’ session, each participant will have learned the five key things that everyone should know about dementia, and aspired to turn an understanding into a commitment to action.

In this blogpost, I wish just to discuss a little bit these messages in a way that is interesting. If you’re interested in finding out more about ‘Dementia Friends’, please go to their website. Whatever, I hope you become interested about the dementias, even if you are not already.

I’ve got nothing to do with writing ‘Dementia Friends’, but the following I reckon is a view which would be given by anyone like me who has worked in this academic field for a very long time.

 

Anyway, I do wish ‘Dementia Friends’ well, and I hope very much you will book yourself into an information session at the first available opportunity.

 

1. Dementia is not a natural part of aging.

This is an extremely important message.

However, it is known that the greatest known risk factor for dementias overall is increasing age. The majority of people with Alzheimer’s disease, typically manifest as problems in new learning and short term memory are indeed 65 and older.

But Alzheimer’s disease is not just a disease of old age. Up to 5 percent of people with the disease have early onset Alzheimer’s (also known as younger-onset), which often appears when someone is in their 40s or 50s.

 

[For a further discussion of this statement, please see another blogpost of mine.]

 

2. It is caused by diseases of the brain.

Prof John Hodges, who did the Foreword to my book, has written the current chapter on dementia in the Oxford Textbook of Medicine. He also supervised my Ph.D. The chapter is here.

There is a huge number of causes of dementia.

The ‘qualifier’ on this statement is that the diseases affect the brain somehow to produce the problems in thinking. But dementia can occur in the context of conditions which affect the rest of the body too, such as syphilis or systematic lupus erythematosus (“SLE”).

 

[For a further discussion of this statement, please see another blogpost of mine.]

 

3. It’s not just about memory loss.

This statement is perhaps ambiguous.

“Not just” might be taken to imply that memory loss should be a part of the presenting symptoms of the dementia.

On the other hand, it might be taken to mean “the presentation can have nothing to do with memory loss”, which is an accurate statement given the current state of play.

John (Hodges) comments:

“The definition of dementia has evolved from one of progressive global intellectual deterioration to a syndrome consisting of progressive impairment in memory and at least one other cognitive deficit (aphasia, apraxia, agnosia, or disturbance in executive function) in the absence of another explanatory central nervous system disorder, depression, or delirium (according to the Diagnostic and Statistical Manual of Mental Disorders , 4th edition (DSM-IV)). Even this recent syndrome concept is becoming inadequate, as researchers and clinicians become more aware of the specific early cognitive profile associated with different dementia syndromes.”

I remember, as part of my own Ph.D. at the University of Cambridge on the behavioural variant of frontotemporal dementia,virtually all the persons with that specific dementia syndrome, in my study later published in the prestigious journal Brain, had plum-normal memory. In the most up to date global criteria for this syndrome, which should be in the hands of experts, memory is not even part of the six discriminating features of this syndrome as reported.

Exactly the same arguments hold for dementia syndromes which might be picked up through a subtle but robust problem with visual perception (e.g. posterior cortical atrophy) or in language (e.g. semantic dementia or progressive (non-) fluent aphasia, logopenic aphasia.) <- note that this is in the absence of a profound amnestic syndrome (substantial memory problems) as us cognitive neuropsychologists would put it.

 

[For a further discussion of this statement, please see another blogpost of mine.]

 

4. It’s possible to live well with dementia.

I of course passionately believe this, or I wouldn’t have written a book on it. It is, apart from all else potentially, the name of the current English dementia strategy.

 

[For a further discussion of this statement, please see another blogpost of mine.]

 

 5. There is more to the person than the dementia.

This is an extremely important message. I sometimes feel that medics get totally lost in their own clinical diagnoses, backed up by a history, examination and relevant investigations; and they become focused on treating the diagnosis rather than the person with medications. But once you’ve met one person living with dementia, you’ve done exactly that. You’ve met only one person living with dementia. And it is impossible  to generalise for what a person with Alzheimer’s disease at a certain age performs like. We need to get round to a more ‘whole person’ concept of the person, in not just recognising physical and mental health but social care and support needs, but realising that a person’s past will influence his present and future; and how he or she interacts with the environment will massively influence that.

 

[For a further discussion of this statement, please see another blogpost of mine.]

Living well with dementia and the #Oldham review of whole person care

There were of course huge structural problems in the much heralded Oldham report on whole person care was published this week.

It’s officially called ‘One Person, One Team, One System‘.

These structural problems are, not least, to what extent will the NHS be paid for out of general taxation in the long term. The issue is not fudged altogether, in that Oldham calls for a future government to look into this as a priority.

Nonetheless, the Oldham Commission does fudge the issue of how much integrated and social care systems can rely on private not state provision. This is a strange ‘elephant in the room’, given the emphasis of the report on individualised budgets (call them what you will, personal budgets or personal care budgets).

Oldham does however concede helpfully that ‘financial arrangements in the adult social care system are equally fragmented, with complex and overlapping funding and provision arrangements between private and public funding sources, and private and public providers of care. The multitude of private care providers adds to this complexity.’

The need to repeal section 75 Health and Social Care Act is pivotal to all this. In fact, a repeal of the whole Act, as Labour (as Andy Burnham and Ed Miliband have indeed promised), would be helpful. This is, quite simply, because legally integration might offend the competition legal infrastructure established by section 75 and its associated Regulations, and of course sit uneasily with EU competition law.

At the moment, the NHS and social care services are geared up to ‘reacting to events’. And this is reflected in the payment by results mechanism (a reincarnation of ‘activity based costing’).

“Public funding has increasingly focused on those with greatest needs – particularly as rationing of care has become more severe – driven by a reactive, crises oriented approach rather than a focus on early intervention and wellbeing.”

Wellbeing is of course not just the opposite of illbeing, though lessons can be learnt from poor hydration and nutrition, for example, in individuals with advanced dementia.

The Oldham Commission view health and wellbeing boards as a vehicle for collective system leadership for whole person care,” involving the leaders of existing organisations working together to coordinate care and align incentives across their geography.” And therefore it is critically important that they are fluent in what wellbeing is, and how to promote it. This is especially important for dementia, but I would say that wouldn’t I.

Information is obviously vital in decision-making along a path to wellbeing however defined. I, in fact, devote a whole chapter to decision-making in my book ‘Living well with dementia’.

The exact mechanism of integration of voluntary organisations and health and care services to provide a combination of medical and non-medical support as part of the care pathway for older people living with multiple long term conditions needs of course to be put under greater scrutiny.

The ‘deal‘ between the Department of Health and the Alzheimer’s Society in promoting ‘Dementia Friends’ is of course welcome in promoting awareness of dementia. But we do need to be careful that, firstly, other dementia charities do not suffer in a ‘zero sum gain’ manner. Secondly, we need to be doubly sure that charities are not expected to pick up any shortfall in state provided services. Already there’s valid criticism of the way in which private companies can legitimately ‘cherry pick’ services to maximise their shareholder dividend.

Oldham’s group is right to refer to “a strong evidence base now exists to target key risks to health independence and wellbeing in old age.” Clearly there’s a balance to be struck between independence through assistive technologies perhaps of persons living with dementia in their own homes, and social inclusion with other persons face-to-face. Online communities offer great value for persons with dementia nonetheless.

Oldham’s team also helpfully reviews how Preventive aspects of whole person care must therefore pay attention to environmental factors. The emphasis in the Report is on diet, but this is valid too for dementias in the context of vascular dementias. Vascular dementias are common in older age groups, and certainly medical professionals, dieticians and others are keen at considering cholesterol and diet, and their interaction with other factor such as smoking.

Therefore, one of the conclusions is that, “Whole person care should not only include joining up services …”

It is inescapable that whole person care should include ‘joined up services’. Data sharing different disciplines, despite the concerns about #caredata, needs to involve a more effective dialogue with the general public, one expects.

The report also picks up on a number of other important issues.

One is the possible interaction with benefits. People with disabilities, for example, are right to wonder if benefits might be taken away if the system drives towards ‘whole person care’. On the other hand, it does not perhaps make intuitive sense for the care and benefits situation to work in isolation?

This is of course an intense political quagmire, given ATOS’ role in both the GP extraction scheme and the implementation of the much criticised disability and employment benefits.

Also, it turns out that 70% of people over 75 live with a major long term condition and a quarter live with two or more. Many persons living with dementia also live with otherconditions.

Furthermore, the Report notes that, “in all groups in society, housing has a large impact on people’s health and wellbeing.” As perhaps care embraces personhood in the true meaning of Kitwood or otherwise, the influences of other people in society, such as housing or the criminal justice system to name but a few, may become apparent.

But what the State is by that stage is anyone’s guess. In the meantime, the Oldham Report is fully consistent with my book ‘Living well with dementia’.

I had expected this to be the case. In fact, there’s a paragraph on whole person care in my book.