It was some considerable interest that I read a contribution in dementia policy, co-authored by one of my previous bosses, Prof Martin Rossor. The other co-author was Prof Martin Knapp. The short piece is called “Can we model a cognitive footprint of interventions and policies to help to meet the global challenge of dementia?”, and is on the Lancet platform here.
I commend the full article to you in fact, but this paragraph will give you a good introduction to the heart of the argument proposed by the two Martins.
“In reframing and extending the debate in this way, it might be helpful to borrow a concept from another major global challenge of modern times: global warming. Can we develop a so-called cognitive footprint that, as with a carbon footprint, can be either negative (impair cognition) or positive (enhance cognition)? A cognitive footprint could then be used to assess and model potential cognitive effects of medical and public health interventions through to social and wider public policies. It could be identified across many public policy areas, including health, social care, education, criminal justice, transport, sport, employment, and doubtless others. The importance of this footprint stems from links between cognitive skills and educational attainment, employment status, earnings, performance in instrumental activities of daily living, and (at national level) to income distribution and economic growth.1 Thus a range of activities will have an effect on cognition throughout the life course that could be associated with footprints as illustrated below.”
First of all, I think we do need to reframe the discussion of dementia at both a domestic and international level. I think use of certain language in the dementia discourse can alter the dynamics of the debate. In my thesis entitled “Living better with dementia: good practice and innovation for the future”, I discuss how abuse of language has helped to advance stigma, discrimination and poor empowerment of people with dementia in one of the early chapters.
I’d like to think the general public’s fundamental knowledge of the dementias has been improved by public ‘awareness campaigns’ in a number of jurisdictions – but there’s no formal way of telling. Sir Gus O’Donnell famously claimed ‘If you treasure it, measure it’, and I think attempts to measure the health related quality of life have attempted to legitimise wellbeing as an outcome not only in clinical trials but in events of clinical commissioning.
Overall I think a ‘cognitive footprint’, if adopted as an innovation in articulating the impact of dementia, might be a very welcome one. I think the understanding of health related quality of life and wellbeing still remains very poor, despite the slogans of ‘living well with dementia’ or ‘living better with dementia’. I think it could act as a very good surrogate measure of how inclusive a society, city or country is of people living with dementia. It also embodies something which I strongly urge people to think; that there is a big non-fatalistic component of dementia. As Richard Taylor PhD, who sadly recently passed away, who had been living with both dementia and cancer, said famously at one of the Alzheimer’s Disease International conferences, “We’re all going to die of something. Having a diagnosis being told to me takes me no closer to the actual day on which I die. I want to think about how to live with dementia, rather than how I am guess how I am going to die from dementia.”
That there are well recognised environmental factors which affect cognition is very important. Infections can indeed produce cognitive impairments, and the article appropriately brings this up in the context of neurocystercosis. I as it happened saw a patient with neurocystercosis in a district general hospital who presented with unexplained epilepsy. And the article is right to identify the ‘bidirectional’ aspect of education and dementia. At one end, we have the ‘lose it or use it’ way of thinking, but at the other end we are well aware that there have been very intelligent people with dementia, for example Baroness Thatcher and Iris Murdoch. Whilst the effects of modifiable risk factors for dementia should not be overstated in policy, the idea that modifiable risk factors can be targeted in work environments or otherwise is important. I also happen to believe we need to forge together the streams of ‘dementia friendly communities’ (a very poor articulation of a worthy concept) and the social determinants of health. I’d also like the term to reflective of the diversity in dementia; for example it might be useful to identify the ‘cognitive footprints’ for young onset dementia. One of my ‘wishes’ is for there to be accurate information about the prevalence of young onset dementia (dementia before the age of 65), country by country.
The two Martins, to give them credit, do appear to be practising what they preach. For example, instead of talking purely in negative terms such as the use of words such as ‘cost’ and ‘burden’, the two Martins talk of ‘cognitive capital’. I think the value of people living with dementia, all 47 million of them, is not to be underestimated. But likewise there are ‘impacts’ of dementia at a country by country level. That is why I think we cannot only see dementia through a developed world prism; and that the Alzheimer’s Disease International are completely justified in pursuing their workstreams in looking at dementia in low and middle income countries as well. A ‘cognitive footprint’ would help not only in communicating the regional impact of dementia in terms of prevalence say, but also would be useful in communicating how successfully local policies are being implemented.
My major concern is the same as that for any metric. It can be gamed. This would be an unfortunate unintended consequence of what I think potentially is a great idea. I once went to a presentation by a corporate law firm about how city firms could help traders of ‘carbon credits’. Carbon credits were introduced in the climate change world by corporates, and some might say helpfully as a rent seeking device. A “carbon credit” is a “generic term for any tradable certificate or permit representing the right to emit one tonne of carbon dioxide or the mass of another greenhouse gas with a carbon dioxide equivalent equivalent to one tonne of carbon dioxide. It would be incredibly sad if big corporates saw the ‘cognitive footprint’ as a fast way to generate easy bucks instead of focusing on what is a delightful way of encapsulating the public health policy issues surrounding dementia?
