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.
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.