Category Archives: Definitions

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Resilience in the midst of austerity: a challenge for dementia wellbeing

In Prof. Felicia Huppert’s latest chapter entitled, “The state of well-being science: concepts, measures, interventions and policie”s, to appear in Interventions and Policies to Enhance Well-being (Huppert, F.A. and Cooper, C.L. (eds.) ), Prof. Huppert re-establishes the perspective that it is possible to demonstrate wellbeing even in the presence of a label of a clinical diagnosis. This aligns itself  nicely with the argument which I have been advancing, that it is the possible to enhance the wellbeing of an individual with dementia through careful consideration of his or environment. For example, one could attempt to make the home or ward better designed, attempt to involve the individual with leisure activities or general activities (such as reminiscence therapy), seek to encourage adoption of assistive technologies or assisted-living technologies, or try to encourage more social activities including participation in a wider community. However, Huppert and So (2013), to establish what components comprise well-being, have examined carefully the internationally agreed criteria for the common mental disorders (as defined in DSM-IV and ICD-10) and for each symptom, listed the opposite characteristic. This resulted in a list of ten features which represent positive mental health or ‘flourishing’. These are: competence, emotional stability, engagement, meaning, optimism, positive emotion, positive relationships, resilience, self esteem, vitality.

Just as symptoms of mental illness are combined in specific ways to provide an operational definition of each of the common mental disorders, they proposed that positive features could be combined in a specific way to provide an operational definition of flourishing. The diagnostic criteria for a mental disorder do not require that all the symptoms be present; likewise, the operational definitions of flourishing (Keyes, 2002) do not require that all the features of positive feeling and functioning be present. There is currently a relative paucity of literature on the efficacy of psychological techniques such as “mindfulness” in enhancing wellbeing in individuals with dementia, but it is possible that innovative ways of improving any aspects of the multi-dimensional construct could be developed through such a technique. Among the reported benefits of mindfulness training in other populations, which are related to subjective well-being, are: reductions in stress and anxiety, increased positive mood, improved sleep quality, better emotion regulations, greater bodily awareness and increased vitality, and greater empathy (Huppert, in press.)

Clearly, ignoring the economic climate of an individual with dementia is not going to be possible, although I have thus far successfully managed to avoid such a discussion. The data reported in Huppert and So (2013) are from 2006/07, two years before the severe economic recession from which many countries have since suffered. Huppert (2013) argues that it would be very interesting to know if the recession has changed the prevalence of flourishing or its component features within and between countries, and the extent to which country rankings of the prevalence of flourishing may have altered. Relatively recent data from the Gallup World Poll show almost no impact of the economics crisis on subjective well-being in the UK (Crabtree, 2010). However, one clearly has to acknowledge the ‘social determinants of health”, famously described by Marmot (2012) as: “Mental health and mental illness are profoundly affected by the social determinants of health; psychosocial processes are important pathways by which the social environment … impact [s] on … physical and mental health … ”  Indeed McKee and colleagues (McKee et al., 2012) make a constructive but profoundly depressing link between illbeing and austerity:

“For many months, the political and financial aspects of the crisis have filled the headlines. However, behind those headlines, there are many individual human stories that remain untold. They include people with chronic diseases unable to access lifesustaining medicines, persons with rare diseases who are losing income support and forced to care for themselves, and those whose hopes of a better life in the future have been dashed see no alternative but to commit suicide. So far, the discussion has been limited to finance ministers and their counterparts in the international financial institutions. Health ministers have failed to get a seat at the table. As a consequence, the impact on the health and wellbeing of ordinary people was barely considered until they made their feelings clear at the ballot box.”

More optimistically, Huppert and So (2011) argue that this parcellation of the positive wellbeing multidimensional construct may be useful for developing targeted interventions:

“If a population group is high on some features of well-being such as positive relationships, but low on others such as engagement or resilience, it is clear where interventions should be targeted.”

resilience ability

 

Psychosocial resilience is a dimension of wellbeing which perhaps will be worth considering in detail, of how an individual and immediates might be able to cope and adapt to future adversity. This indeed is reflected in a definition of psychosocial resilience as provided by Williams and Kemp (in press) as “a person’s capacity for adapting psychologically, emotionally and physically reasonably well and without lasting detriment to self, relationships or personal development in the face of adversity, threat or challenge.”  Reaching a logical conclusion, whilst there might be aspects of life which encourage illbeing, a reasonable strategy might be to strengthen components which can help to improve specific aspects of wellbeing. This would not have been possible had it not been for the work of Prof. Felicia Huppert and colleagues emphasising that wellbeing is a multidimensional construct, in the same way that it is widely acknowledged that it is unhelpful to think of dementia as a unitary diagnosis.

The Department of Health (2012) policy document, “No health without mental health: implementation framework” very nicely produces a backdrop for emphasising the importance of wellbeing in dementia. Their core principles are set out “a clear and compelling vision, centred around six objectives: more people will have good mental health, more people with mental health problems will recover, more people with mental health problems will have good physical health, more people will have a positive experience of care and support, fewer people will suffer avoidable harm, and fewer people will experience stigma and discrimination“.

Notwithstanding this, it appears that the analysis of ‘living well in dementia’ is now benefiting from an approach which has led to an appreciation that no dementia is clinically the same; nobody’s wellbeing is exactly the same, because of the way in which all the contributing parts have come together. This approach is elegant, holds incredible promise for the future.

 

 

 

 

References

Crabtree, S. (2010) Britons’ wellbeing stable through economic crisis Gallup, November 24, 2010. Available at: http://www.gallup.com/poll/144938/Britons-W%20ellbeing-Stable-Economic-Crisis.aspx

Department of Health (2012) No health without mental health: implementation framework, available at: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/156084/No-Health-Without-Mental-Health-Implementation-Framework-Report-accessible-version.pdf.pdf

Huppert, F. (in press) The state of well-being science: concepts, measures, interventions and policies, to appear in Huppert, F.A. and Cooper, C.L. (eds.) Interventions and Policies to Enhance Well-being, Oxford: Wiley-Blackwell.

Huppert, F.A. and So, T.T.C. (2013) Flourishing across Europe: application of a new conceptual framework for defining well-being, Social Indicators Research, 110(3), pp 837-861.

Keyes, C. L. M., (2002) The mental health continuum: From languishing to flourishing in life, Journal of Health and Social Behavior, 43, 207– 222.

Marmot M. (2012) Health inequalities and mental life, Advances in Psychiatric Treatment, 18, pp. 320-322.

McKee, M., Karanikolos, M., Belcher, P., and Stuckler, D. (2012) Austerity: a failed experiment on the people of Europe. Clin Med, 12(4), pp. 346-50, available at: http://www.rcplondon.ac.uk/sites/default/files/documents/clinmed-124-p346-350-mckee.pdf.

Williams, R, and Kemp, V. (in press.) Psychosocial resilience, psychosocial care and forensic mental healthcare. In: Bailey S, Tarbuck P. (eds.) Adolescence Forensic Psychiatry, Cambridge: Cambridge University Press.

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What is “living well”?

Before contemplating approaches to ‘living well with dementia’, and how you could even measure it, we need to have an understanding of what “wellbeing” might be, and why it is currently considered important in public health policy circles and beyond.

Definition of wellbeing

The first thing to think about is: what does it actually mean to live well, in other words wellbeing?

Historically, Jahoda (1958) is usually regarded as the first person to have promoted the idea of positive mental health, which she defined in terms of six elements of positive functioning: ‘attitudes of an individual towards his own self’, ‘self actualisation’, ‘integration’, ‘autonomy’, ‘perception of reality’ and ‘environmental mastery’.

Huppert, Baylis and Keverne (2004) for their Royal Society meeting in 2004 further propose a definition of “wellbeing” as follows:

For the purposes of the Discussion Meeting, we defined wellbeing in broad terms as ‘a positive and sustainable state that allows individuals, groups or nations to thrive and flourish’. This means that at the level of an individual, wellbeing refers to psychological, physical and social states that are distinctively positive. Positive psychological states are exemplified by emotions such as happiness and contentment, attitudes such as generosity and empathy, and mental processes such as cognitive capabilities, interest and motivation. Positive physical states are characterized (sic) by vitality and physical capabilities, while positive social states include satisfying social bonds and loving relationships. Our definition of wellbeing also encompasses human resilience—the ability to survive and thrive in the face of the setbacks inherent in the process of living.

Wellbeing can be used to describe an objective state as well as a subjective experience. Objective wellbeing refers to wellbeing at the societal level; the objective facts of people’s lives, in contrast to subjective wellbeing which concerns how people actually experience their lives.

Wellbeing as a goal

Wellbeing has become an important goal in itself, both here and in the U.S. among many other jurisdictions.

Wellbeing is truly a concept that crosses across a number of different subject disciplines, and for many there are common attractions in using it as a national policy goal. Quoted by Juliet Michaelson (2012) of the New Economics Foundation Cente for Wellbeing, the head of the USA’s central bank, Federal Reserve chair Ben Bernanke, offered that:

“The ultimate purpose of economics, of course, is to understand and promote the enhancement of wellbeing. Economic measurement accordingly must encompass measures of wellbeing and its determinants.”

wellbeing2

There are currently at least four good key reasons at least for a focus on wellbeing:

  1. Wellbeing indicators directly capture information about human lives. There is now substantial evidence showing that we may be able robustly to measure how people ‘feel’ about their lives, using indicators that converge with a whole range of other types of data. These have also been shown to predict future behaviour.
  2. Measuring wellbeing broadens the scope of an overly narrow politics. It is widely argued that politicians have become so used to their success or failure being judged according to the headline measure of economic growth that their scope of action (the gross domestic product or “GDP”) has become rather narrow. This may indeed have contributed to apathy and disenfranchisement with the contemporaneous “political process”.
  3. People support wellbeing as a goal for governments as well as themselves. There has long been evidence that people think wellbeing is an important goal for governments to pursue. For example, a BBC poll of 1996 found that 81% of people in the UK supported the idea that government’s prime objective should be the ‘greatest happiness’ rather than the ‘greatest wealth’.
  4. Measuring wellbeing is a fundamentally democratic approach. Directly measuring how people feel about their lives avoids the need for others making decisions about what is important to then: this is the much respected ‘no decision about me without me’ approach. In principle, then, this brings people’s voices into the heart of policy.

According to Norton, Matthew and Brayne (2013), population ageing over the first half of this century is likely to lead to dramatic increases in the prevalence of dementia. This will affect all regions of the world, but also (it is said) particularly developing regions. Dementia projections have been used extensively to support policy. It is therefore important these projections are as accurate as possible. By the middle of this century, around 1 in 5 of the estimated 9 billion world population are expected to be aged over 60-years, compared to around 1 in 10 in 2000 (United Nations, 2004).

Furthermore, according to Luengo-Fernandez, Leal, and Gray (2011), dementia was estimated to cost the EU €189 billion in 2007. 68% of total costs were due to informal care, 26% to social care, 5% to health care and 1% to “productivity losses”. Therefore, dementia has posed a significant economic burden to European health and social care systems, and society overall, and it is extremely likely that it will continue to do so. The EURODEM consortium found that among European studies, using similar methodologies and diagnostic criteria, there were only trivial differences in the age-specific prevalence of dementia (twelve studies) and DAT (six centres), concluding that ecological comparisons were unlikely to be informative about aetiology (Rocca et al., 1991).

Helpful sources

Jahoda, M. (1958) Current concepts of positive mental health, New York: Basic Books.

Huppert, F.A., Baylis, N., and Keverne, B. (2004) Introduction: why do we need a science of wellbeing?”, Phil Trans R Soc Lond B, 359, pp. 1331–1332.

Luengo-Fernandez, R., Leal, J., and Gray, A.M. (2011) Cost of dementia in the pre-enlargement countries of the European Union. J Alzheimers Dis, 27(1), pp. 187-96.

Michaelson, J. (and the New Economics Foundation) (2012) The importance of measuring wellbeing http://www.neweconomics.org/blog/entry/the-importance-of-measuring-well-being.

Norton, S, Matthews, FE, and Brayne, C. (2013) A commentary on studies presenting projections of the future prevalence of dementia, BMC Public Health, 13, pp. 1.

Rocca, W.A., Hofman, A., Brayne, C., Breteler, M.M.B., Clarke, M., Copeland J.R.M., Dartigues, J.F., Engedal, K., Hagnell, O., Heeren T.J., et al. Frequency and distribution of Alzheimer’s disease in Europe: a collaborative study of 1980–1990 prevalence findings. The EURODEM-Prevalence Research Group. Ann Neurol 1991;30:381–90.

United Nations (2004) World population to 2300, available at: http://www.un.org/esa/population/publications/longrange2/WorldPop2300final.pdf.

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