Don’t get me wrong.
I love neuropharmacology. I am interested in the neurotransmitter pathways of the human brain, and how they affect cognition and behaviour. I hold responsible for this Prof Trevor Robbins, one of my supervisors in my own doctoral thesis at Cambridge between 1997-2000. A great man in every sense, possibly the brightest person I have ever worked for, and a truly insightful genius. I don’t say this lightly.
Some time ago, I came to be interested in drug treatments for dementia. I took as examples simple manipulations of the dopaminergic and serotonergic systems of the brain, and indeed published my results on methylphenidate and paroxetine in a timely fashion. One of these drug manipulations worked in improving cognitive symptoms of the behavioural variant of frontotemporal dementia; one didn’t.
I was trained as a junior physician taught in research almost twenty years ago to value the nature of the scientific method. I was taught how to welcome the approach of scientific enquiry, that knowledge is built on bit by bit every day. Whilst we can overwhelmingly disprove something, it’s hard to be certain about findings. Unsurprisingly therefore I happen to think you can learn a huge amount from ‘failures’, and as such no research will therefore ever go to waste.
For rather complicated reasons, I later came to study criminal law. There I saw a rather different approach to proof – where things would be stated beyond reasonable doubt. This is of course different to the standard of proof in civil law, i.e. on the balance of probabilities.
I have some feeling for risk and defined probabilities, but it’s not great. I have some understanding of the relative risk of me being hit by a bus tomorrow compared to me travelling in a jumbo jet being gunned down over Egypt or Malaysia.
But I find risk and uncertainty tricky – this is like most human beings. I don’t think physicians and researchers have grasped this properly. Even if you can tolerate justifying booking in someone to do a spinal tap or take a set of bloods, or to go through a claustrophobic brain scan, think about real use you’ll make of the results. Is it really acceptable, or indeed helpful, to say to someone that they have a X% chance of developing Alzheimer disease in Y years time?
And – how confident would you feel in stating your belief, however well defined and settled, that if you did W, you could reduce your risk of developing dementia by Z?
We are where we are – and be in no doubt that insurance markets flourish on risk. Your premium will depend on how hazardous you are you to your insurer – do you have a strong family history of particular gene mutations for dementia?
When you attend AAIC this year again, I welcome you really to think critically about the concept of ‘pre-dementia’. For example, what does this tell you about the adequacy of our current diagnostic mechanisms for dementia if in fact the development of dementia is a slow burn across decades?
Think about the wider philosophical point. You might not be certain that you definitely have Alzheimer’s disease or you definitely have frontotemporal dementia, but if they are simply different manifestations of the way certain things happen to build up in the brain – such as tau or amyloid – do the diagnostic classifications indeed matter?
Or take for example posterior cortical atrophy, manifest in early stages most conspicuously, perhaps, in higher order visual processing. If you’re only interested in tau or amyloid, or voxel morphometry on MRI in parts of the temporal, occipital or parietal lobe, I have no problem with that.
What I do have a problem is is you not offering a way of improving his or her quality of life after the diagnosis. Perhaps you can find a way for him or her to live better with his difficulties, which could also include memory. Such an approach is called enablement – it is rehabilitation. It should be the norm for any long term condition.
We are where we are – and that includes in the hysteria of repeating every year the latest breakthrough on monoclonal antibodies for treating Alzheimer’s disease, this year reaching phase 3 for the first time, we have 49 million people living with dementia. Dementia is not discriminatory, in that anyone can develop it at any time. Likewise, it’s certainly not simply a first-world problem. If you’re vaguely concerned in equity, fairness and justice, you will be concerned about the latest technologies in Toronto, including drug treatments, not being available in a small village in Somalia.
This was always going to be the problem with pinning all your hopes on the medical model donkey. Even if the big breakthroughs come through in dementia, as in cancer, for different subtypes in different advances, how are we going to make them available? There’s no point slogging away for this for 10-15 years at huge cost for then the national regulator to advise against widespread adoption.
If you take the view as I do that it might be possible to slow right down specific dementias in future then I think it’s worth thinking about the best time to think about cognitive stimulation or cognitive rehabilitation psychological therapies. Without aggressively pimping innovations through private markets, it would be nice if psychological therapies could be easily self-adopted for the public good.
If you believe in zero sum gain, or even if you believe that money does not grow on trees, think about how easy is to divert resources from care to the ‘magic bullet’ of “curing” dementia. The fallacy of the cure is well rehearsed elsewhere – there’s no “cure” for asthma or headaches, routinely, just symptomatic treatment.
If you’re involved in research, I ask you not to be hysterical in raising false hopes to others about your work. If you’re involved in care, I beg you not just to talk about ‘treatments’ but to think about a whole person holistic management experience.
Listen to people living with dementia currently. Believe me, they have fundamental human rights, and you need also legally to listen to them.