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Operationalising 'the cognitive footprint'

It is widely accepted that well-being is a multidimensional concept encompassing multiple domains of human functioning (McGillivray, 2007).

Objective and subjective well-being is fundamental to many international economic strategy recommendations and the measurement and monitoring of both is increasingly required for policy development and evaluation.

There has recently been a surge in interest in measuring wellbeing at a national level, a policy plank which has grown to prominence in recent years. There is absolutely no reason why dementia should escape this approach, particularly since the promotion of wellbeing is the statutory aim of the Care Act (2014).

“Dementia 2012” was the first in a series of annual reports for the Alzheimer’s Society. YouGov completed a poll of the UK adults for Alzheimer’s Society in December 2011. 2,070 individuals were asked about both their own quality of life and their perceptions of how well people are able to live with dementia.

That poll found that 17% of people with dementia responding to the survey said that they are not living well with dementia at all, 55% said they are living quite well with dementia and only 22% said that they are living very well with dementia.

This survey had been distributed to people with dementia via Alzheimer’s Society dementia support workers and dementia advisers in England, Wales and Northern Ireland.

Just shy of the weekend currently in progress, 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.

Knapp and Rossor raised the issue of a “cognitive footprint” thus.

“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.”

There are methodological issues to do with a ‘mass survey’ of people with dementia.

First of all, there’s the ethical issue of consent. As such it’s not a clinical trial, and even then special considerations are being used to involve as many people as possible in research ethically as possible. One would have to confirm that this survey did not require local or national clinical ethical approval; and if not, such approval would have to be sought.

Secondly, one would have to select arbitrarily a size of the sample. A good starting point would be a comparable number to the Dementia 2012-5 samples. Also, there has never been any comment to my knowledge regarding the composition of these samples. For example, would the sample comprise of people with dementias reflecting the natural national prevalences of the different underlying conditions, such as Alzheimer’s disease? Might it be helpful to do a separate survey for people living with dementia under the age of 65 (so called ‘young onset dementia’)?

Thirdly, how would one do the survey?

It makes sense, for example, to do the survey electronically; but this raises questions how confident people living with dementia feel in participating in electronic surveys? Such surveys would be expected not to offend the Equality Act (2010). I know from my own personal experience that I blog sometimes with the option of the audience selecting a large size of print (this is for people living with a posterior cortical atrophy type of dementia, where reading difficulties can be noteworthy.)

And how to measure the wellbeing metrics?

I feel a useful starting point would be to use the methodology of the Office for National Statistics in measuring wellbeing currently. One example of their recent outputs is here.

There are other valid approaches. For example, this paper charts the development of the UK validation of a general measure of subjective well-being: the modified BBC subjective well-being scale (BBC-SWB) (“BBC paper”).

The ONS describe a whole plethora of measures and helpfully provide supportive literature. Particularly relevant here are the ONS’ attempts at measuring ‘social capital’, which could prove to be helpful to the measurement of ‘cognitive capital’ of Rossor and Knapp.  Also, the ONS provide a basis for ‘international comparisons’. Clearly, for us to make comparisons with other jurisdictions, one would need to run the same methodology abroad, say, with supportive charities (such as Alzheimer’s Australia or the Alzheimer’s Association), maybe under the auspices of the Alzheimer’s Disease International.

Table 1 of the BBC paper presents a series of questions for investigation, but they could be easily adapted to ask about the domains of the Rossor and Knapp paper.

“Are you happy with access to criminal justice?”

“Are you happy with opportunities to do sports?”

The document “Measuring  Subjective Well-being” from Lucy Tinkler and Stephen Hicks at the Office for National Statistics (2011) helpfully summarises the theoretical underpinnings of this type of work.

Three broad approaches have been identified when measuring subjective well-being; ‘evaluative’, ‘experience’, and ‘eudemonic’.  That’s why it would be important to include some ‘core questions’, viz:

  • overall, how satisfied are you with your life nowadays? (experience)
  • overall, how happy did you feel yesterday? (positive affect)
  • overall, how anxious did you feel yesterday? (negative affect)
  • overall, to what extent do you feel the things you do in your life are worthwhile? (eudaemonic)

The ONS approach to measuring subjective well-being “is a balanced approach, taking into account the different ways that subjective well-being can be measured.”

Previous wellbeing research has thrown up some interesting anomalies.

For example, there’s the notion of the ‘happy peasants’, that very poor people can be extremely contented; or put another way, the relationship between income or GDP and quality of life or wellbeing is poor. Likewise, it has been shown that wellbeing does not necessarily correlate with ‘severity’ of dementia, howeverso defined or measured.

I fully expect future research to throw up some anomalies. We might find that countries with the highest incomes do not necessarily show the highest subjective ratings of wellbeing.

This brings up a final methodological consideration. How good are people living with dementia at rating their own wellbeing? This is a relatively under explored area of research, although there is a growing area of research in dementia into degree of insight into cognitive symptoms and lack of insight (anosognosia).

But Rossor and Knapp should be given credit for opening up an extremely area of research, which will be important both nationally and internationally.

 

Recommended reading

McGillivray M: Human well-being: issues, concepts and measures. In Human well-being: concept and measurement. Edited by McGillivray M. Basingstoke: Palgrave Macmillan; 2007:1–23.

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How a 'cognitive footprint' may put the heat on policy on dementia

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?

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