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'Whole person care' has been done by family doctors for years. We do not need yet more managerial silos.

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“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 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.

 

 

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Is the use of GPS "trackers" for people living with dementia necessary and proportionate?

This is the introduction to “Living better with dementia: how champions can challenge the boundaries”, chapter 12, “Do GPS trackers have a rôle to play in living better with dementia?”

 

 

“We live in a ‘surveillance society’. If you happen to log in on Facebook, Facebook can identify your location exactly, and then can offer you a choice of cheap hotels there. The idea that a GPS system (“global positioning system”), as a tracker, can identify you where you are might seem like an invasion of privacy, but not much of an invasion of privacy than Facebook, arguably. And indeed a non-invasive system might be better than a method of physical restraint for certain people with dementia. It would be hard to justify a tracking device in a person who is not a candidate for physical restraint though conceivably?

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Tracking for people with dementia raises strong emotions, not helped with some of the discussion acting at the extremes, such as a hypothermic person with dementia found in a ditch due to a GPS tracker. But the conflation of ‘tracking’, with ‘tagging’ as per frequent offenders in the criminal law, is an unfortunate one. At a time when there are international drives towards decreasing stigma in people with dementia, people warn about the mission creep that is offered with tracking: for example, one wonders how long it might be for a GPS tracker to become an implantable micro-chip. The word ‘tracking’ itself, however, is a misnomer, in that these trackers do not actively ‘follow’ people, but can pinpoint someone’s location through the method of ‘trilateral’. Satellite detectors happen to be there, in the same way that public telephone boxes happen to be there. Public telephone boxes take on a different atmosphere if highly illegal activity happen to be taking there, and there is a proportionate need to intervene. But intervene in what? Here we are talking about a criminal activity, rather than intervene in a person at risk of causing harm to himself or herself? The question that someone can consent to doing himself or herself avoiding being at personal harm, exercising too his or her own ethical right to autonomy, and a clear definition of consent depends on a clear definition of capacity. A human right to privacy which is inalienable albeit qualified may transcend capacity, causing further disquiet in legal circles. And, besides, people who do happen to travel beyond their physical zone might not be doing so out of any particular malice: a person with dementia may simply have problems with spatial navigation. Presumption of innocence is pivotal in the law is pivotal, and laying blame on innocent people is unacceptable – even subtlely through terms laced with innuendo such as “wandering”.

One wonders whether the legal definition of capacity across a number of jurisdictions, which depends on an “all-or-nothing” construct, can cope with those dementias where cognitive abilities fluctuate or cognitive demands vary. Is legal capacity to make a sandwich the same as capacity to write a paper on human rights? And who is best to make a decision about fitting a GPS tracker? It must surely cause concern if a caregiver would wish to fit one simply because it makes the monitoring of an individual an easier job, rather than the person with dementia wishes to be more independent. It is therefore clear that there is no right answer to GPS systems in dementia, especially as the term “dementia” itself is a portmantaneau term for lots of different clinical conditions, with different types and ‘severities’. Whether GPS trackers are necessary and proportionate for any one person living with dementia is a rather abstract question, given that there are so many different subtypes of dementia making some more prone to travel beyond their locality than others. With GPS tracking in dementia, we see yet another example where ‘one glove fits all’ approach is a dismal failure.”

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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.

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Personalised medicine, genetics and Big Data: the "New Jerusalem" for dementia?

The fact that there are real individuals at the heart of a policy strand summarised as ‘young onset dementia’ is all too easily forgotten, especially by people who prefer to construct “policy by spreadsheet”.

It is relatively uncommon for a dementia to be down to a single gene, but it can happen. And certainly, even if there might not be ‘cure’ for today or tomorrow, identification of precise genetic abnormalities might provide scope for genetic counseling. Markus (2012) argues that many monogenic forms of stroke are untreatable, and therefore, specialised genetic counseling is important before mutation testing. This could be particularly important in asymptomatic individuals, or those with mild disease; for example, potential cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy (CADASIL) patients who have migraine but have not yet developed stroke or dementia. Mackenzie and colleagues (Mackenzie et al., 2006) published on a group of families with a clinical diagnosis of tau-negative, ubiquitin-immunoreactive neuronal inclusions (NII). The authors discussed how findings across the literature appeared to suggest that, in this particular condition, NII are a highly sensitive pathological marker for progranulin genetic mutations and their demonstration may be a way of identifying cases and families that should undergo genetic screening.

But is this genomics revolution the beginning of a “New Jerusalem” in dementia, beyond the headlines?

“Big data” refers to information that is too large, varied, or high-speed for traditional methods of storage, processing, and analytics. For example, one application of mining large datasets that has been particularly productive in the research community is the search for genome-wide associations (“Genome-Wide Association Studies (“GWAS”)). GWAS rely on analysis of DNA segments across vast patient populations to search for DNA variants associated with a particular disease. To date, GWAS analyses have identified a handful of promising genetic associations with Alzheimer’s disease, including Apo E4.

This is clearly wonderful if “money does grow on trees”, but the concern for initiatives such as these such work is resource-intensive, and diverts resources from frontline improvements in wellbeing of people living with dementia. Investors also have to be mindful of their financial return compared to the risk of such initiatives. One of the biggest complaints of proponents of “Big Data” is that data tend to be pocketed in a fragmented, piecemeal fashion.

As the McKinsey Centre for Business Technology (2012) state in an interesting document called, “Perspectives on digital business”:

 “The US health care sector is dotted by many small companies and individual physicians’ practices. Large hospital chains, national insurers, and drug manufactuers, by contrast, stand to gain substantially through the pooling and more effective analysis of data.”

Vast collections of genomic data obviously represent a goldmine for health providers around the world. Meltzer (2013) reviews correctly that personalized medicine been the subject of increased basic and clinical research interest and funding. Meltzer describes that a knowledge of the genetic and molecular basis of clinical heterogeneity should make it possible to more reliably predict the likely outcomes of alternative approaches to treatment for specific individuals and therefore what course of action is likely to be best for any given patient. Knowledge of personal genetic traits might allow accurate prediction of those invididuals who are most likely to experience adverse events through medication (Markus, 2012).

Both ‘Big Data’ and ‘personalised medicine’, in being couched language of bringing value to operational processes in corporate strategy, tend to lose the precise cost-effectiveness arguments at an accounting level. The new CEO of NHS England, Simon Stevens, will have raised eyebrows with the Guardian piece entitled, “New NHS boss: service must become world leader in personalised medicine” from 4 June 2014 in “The Guardian” newspaper (Campbell, 2014) . Whether the National Health Service of the UK can cope with this, with inevitable transfer of funds from the public funds to private funds, with all the talk of ‘sustainability’, is a different matter. It is difficult to predict what the uptake of personalised medicines will be, even if every patient has access to his or her personal genomic sequence in years to come. All jurisdictions have to consider whether they can justify the sharing of information for public interest overcoming concerns about data privacy and security, and ultimately this is a question of legal proportionality.

The pitch from corporate investors tend to minimise biological practicalities too. For example, it is still yet to be determined what the precise interplay between genetic and environmental factors are, particularly for the young onset dementias. And the assumption that all ‘big’ data are ‘good’ data could be a fallacy. There are 1000 billion neurones in the human brain, and it is well known that not all neuronal connections between them are ‘productive’; in fact a sizeable number are redundant. Heterogeneity in genetic sequences might be meaningful, or utterly spurious, and it could be a costly experiment to wait to find out how, when there are more pressing considerations about both care and cure.

But is this genomics revolution the beginning of a “New Jerusalem” in dementia, beyond the headlines?

Frontotemporal lobar degeneration (FTLD) is the second most common cause of dementia in individuals younger than 65 years (Ratnavilli et al., 2002). It is a progressive neurodegenerative disorder characteristically defined by behavioural changes, executive dysfunction and language deficits. The behavioural variant of FTLD is characterised in its earliest stages by a progressive, insidious change in behaviour and personality, considered to reflect underlying problems in the ventromedial prefrontal cortex (Rahman et al., 1999). FTLD has a strong genetic background, as supported by positive family history in up to 40% of cases, higher than what reported in other neurodegenerative disorders and by the identification of causative genes related to the disease (Seelaar et al., 2011). The notion that genetic background might affect disease outcomes and rate of survival, modulating the onset and the progression of the pathological process when disease is overt (Premi et al., 2012). Given the consolidated role of genetic loading in FTLD, the likely effect of environment has almost been neglected.

Only recently, it has been reported that modifiable factors, i.e. education and occupation, might act as proxies for reserve capacity in FTLD. Patients with a high level of education and occupation can recruit an alternative neural network to cope better with cognitive functions (e.g. Borroni et al., 2009; Spreng et al., 2011). But the search for treatments for particular types of dementia based on their underlying genes and genetic products is arguably not an unreasonable one. A good example is provided by the Horizon Scanning Centre of the National Institute for Health Research of NHS England in September 2013 (NIHR HSC ID: 8239): leuco-methylthioninium, which is a “tau protein aggregation inhibitor”. It acts by preventing the formation and spread of neurofibrillary tangles, which consist of aberrant tau protein clusters that aggregate within neurons causing toxicity and neuronal cell death in the brain of patients with certain forms of dementia. Leuco-methylthioninium is a stabilised, reduced form of charged methylthioninium chloride. The clinical trials for this are under way. The medication at the time of writing may or may not work safely.

No. This genomics revolution the beginning of a “New Jerusalem” in dementia, especially when social care is on its knees.

 

References 

Borroni B, Premi E, Agosti C, Alberici A, Garibotto V, Bellelli G, Paghera B, Lucchini S, Giubbini R, Perani D, Padovani A. (2009) Revisiting brain reserve hypothesis in frontotemporal dementia: evidence from a brain perfusion study. Dement Geriatr Cogn Disord, 28, pp. 130–135

Campbell, D. (2014) New NHS boss: service must become world leader in personalised medicine, The Guardian, 4 June. http://www.theguardian.com/society/2014/jun/04/nhs-boss-world-leader-personalised-medicine.

Mackenzie, I.R., Baker, M., Pickering-Brown, S., Hsiung, G.Y., Lindholm, C., Dwosh, E., Gass, J., Cannon, A., Rademakers, R., Hutton, M., Feldman, H.H. (2006) The neuropathology of frontotemporal lobar degeneration caused by mutations in the progranulin gene, Brain, 129(Pt 11), pp. 3081-90.

Mendez, M. (2006) The accurate diagnosis of early-onset dementia. Int J Psychiatry Med, 36(4), pp. 401– 12.

McKinsey Centre for Business Technology (2012) Perspectives on digital business.

Rahman, S., Sahakian, B.J., Hodges, J.R., Rogers, R.D., Robbins, T.W. (1999) Specific cognitive deficits in mild frontal variant frontotemporal dementia, 122 (Pt 8), pp. 1469-93.

Ratnavalli E, Brayne C, Dawson K, Hodges JR. (2002) The prevalence of frontotemporal dementia. Neurology, 58(11), pp. 1615-1621.

Spreng, R.N., Drzezga, A., Diehl-Schmid, J., Kurz, A., Levine, B., Perneczky, R. (2011) Relationship between occupation attributes and brain metabolism in frontotemporal dementia,  Neuropsychologia, 49, pp. 3699–3703.

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