binary choice

A binary choice between personalised medicine or person-centred care? We can’t go on like this.

This piece of mine is to appear in ‘My Health Skills’ tomorrow. I have been given permission to reproduce it here.

In 2009, the then Government in England published its five year strategy for dementia. It’s therefore very timely, as we approach 2014, to take stock the direction of our policy, and to evaluate critically where its opportunities and pitfalls might now lie.

In 1999, I published at Cambridge a paper on the early diagnosis of the frontal dementias from a cognitive neuroscientific perspective. This paper is indeed well known in itself, and is currently cited in the chapter on dementia in the Oxford Textbook of Medicine. Since then, the language in national policy overall has changed from ‘early’ and ‘timely’ regarding the clinical diagnosis of the dementias, in part due to the valiant efforts of Prof Alistair Burns (the national clinical lead for dementia in England). I feel this is a very welcome move.

Above all, the diagnosis of dementia should be appropriate for the right time in a person’s life. The discussion of wishing to improve national diagnosis dates indeed dementia is a valid one, but really does need to be in expert hands. There are hundreds of different causes of dementia, albeit the dementia of the Alzheimer type is the most common one globally. I’d be the first to say the person ‘comes first’, in that I’m a card-carrying advocate of Tom Kitwood’s “personhood”. The diagnosis of a dementia in an individual nonetheless should be on clinical need not the need to meet a national ‘target’. On the other hand, a correct diagnosis of dementia can be enable someone to ‘access’ appropriate services. Large volumes of money should not be pumped into increasingly gimmicky ways of diagnosing a dementia; the system for a correct diagnosis and correct post-diagnosis support must be funded properly.

In my view, the drive to understanding living well with dementia doesn’t simply come from the fact the “drugs don’t work” (don’t work very well in early stages of dementia, that is.) The benefits of a class of drugs in dementia called cholinesterase inhibitors have undoubtedly been overstated in the media, alarmingly often by fundraisers themselves for dementia research. After nearly 15-20 years of trying, the published evidence for cholinesterase inhibitors having a beneficial effect on memory and attention is minimal. The evidence that they slow down progression of that syndrome is very poor. The evidence that they significantly decrease the rate of atrophy in critical parts of the brain in that syndrome is poor.

That is not to say, at all, that these drugs have been useless. I know personally of carers of individuals who’ve reliably reported good effects (and it may be that they may be particularly effective in certain types of dementia such as Lewy Body dementia.) Pharma has taken up a huge amount of funding for ‘research and development’; but this is at a time when carers are on zero-hour contracts. Many people currently report that caring does not appear to a prestigious vocation this merits further scrutiny. That is wrong.

From that perspective, last week’s G8 dementia conference was truly a missed opportunity. It is hard to find a single ‘cure for dementia’ especially given that there are hundreds of different causes of dementia at least. However, an outcome to slow progression or cure outright types of dementia is an ambitious yet admirable claim. A promise, though, to disseminate examples of dementia care is not the same as investing in necessary and sufficient care. These important questions were left unanswered. The media invariably reported dementia debate in hysterical language, using words such as “time bomb” and “catastrophe”. I resented this because it was if the media wished us to be angry that we all hadn’t noticed that dementia is important (aside from the fact that I have given all my adult life to studying it.)

Even when I was a junior doctor in the dementia firm at the National Hospital for Neurology and Neurosurgery more than a decade ago, I was totally unaware of personhood. It’s clear people working on dementia in different disciplines don’t communicate with another. It would be a sign of humility of the medical profession if they could acknowledge that they do not have all the answers, particularly if members of that profession have all their eggs in the ‘cure’ basket. Much can indeed be done to help a patient to live well with dementia, including optimising design of the ward, home or built environment, improving advocacy services, improving information about dementia services, and improving access to leisure activities, for example. There is much wonderful work currently in progress in developing assistive technologies and ambient assisted living technologies, which potentially could improve the wellbeing of people with dementia, in the context too of telemedicine and telehealth.

I firmly believe in acknowledging the value of social capital of those caring for people with dementia, including friends and families, but certainly we need to appreciate that caregivers themselves can need support. This is because people with dementia can be open to financial abuse themselves, and need some form of legal protection. ‘Dementia friendly communities’, I feel, potentially provide a wonderful mechanism for we can include people with dementia in society. But, even there, we need desperately high quality research to match the marketing output of corporates seeking competitive advantage. Peer-reviewed published research on this in the medical journals is virtually non-existent.

The focus on G8 dementia, from the perspective of Big Pharma, was unashamedly ‘big data’. The undercurrent that personalised medicine, involving sharing of drug trials data and possibly genomic information across jurisdictions, was pretty obvious to me. The way that corporate investors sought to ‘rent seek’ through changes in the law to allow ‘flexibility’ was also a warning sign for me. And of course people with dementia are more than generous with their efforts to ‘co-produce’ a solution. But as the dementia debate becomes increasingly complex, and as people with dementia want real solutions to shortfalls in the caring system, we have to be quite brutal as a society in questioning one huge issue.

Now from a sedentary position as an academic, I don’t want to be mistrustful of people’s motives. I don’t want to further a feeling of apprehension. I do, however, think it’s unfortunately the case that, apart from the wonderful people themselves living with dementia, there are some vocal ‘stakeholders’ in the dementia world who have their own agendas to pursue. And all too easily they add noise and confusion to the actual signal.

Has this really become a binary choice between personalised medicine or person-centred care? We can’t go on like this. No it hasn’t, whatever politicians and their admirers tell you – the person with dementia will always come first, as far as I’m concerned.

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