Day: November 24, 2013

Would I want to know if I had a dementia?

Shibley Rahman 1 Comment

Brain scan

Would I want to know if I had a dementia?

The background to this is that I am approaching 40.

For the purposes of my response, I’m pretending that I didn’t study it for finals at Cambridge, nor learn about it during my undergraduate postgraduate training/jobs, nor having written papers on it, nor having written a book on it.

However, knowing what I know now sort of affects how I feel about it.

Dementia populations tend to be in two big bits.

One big bit is the 40-55 entry route. The other is the above 60 entry route. So therefore I’m about to hit the first entry route.

I don’t have any family history of any type of dementia.

My intuitive answer is ‘yes’. I’ve always felt in life that it is better to have knowledge, however seemingly unpleasant, so that you can cope with that knowledge. Knowledge is power.

If I had a rare disease where there might be a definitive treatment for my dementia, such as a huge build-up potentially of copper due to a metabolic inherited condition called Wilson’s disease, I’d be yet further be inclined to know about it.

I would of course wish to know about the diagnosis. The last thing I’d want is some medic writing ‘possible dementia’ on the basis of one brain scan, with no other symptoms, definitively in the medical notes, if I didn’t have a dementia. This could lead me to be discriminated against to my detriment in future.

There is a huge number of dementias. My boss at Cambridge reviewed the hundreds of different types of dementia for his chapter on dementia in the current Oxford Textbook of Medicine. Properly investigating a possible dementia, in the right specialist hands, is complicated. Here‘s his superb chapter.

But just because it’s complicated, this doesn’t mean that a diagnosis should be avoided. Analysis can lead to paralysis, especially in medicine.

I very strongly believe that there’s absolutely nobody more important that that person who happens to living with a diagnosis of dementia. That diagnosis can produce a constellation of different thinking symptoms, according to which part of the brain is mainly affected.

I also think we are now appreciating that many people who care for that person also may have substantial needs of their own, whether it’s from an angle of clinical knowledge about the condition, legal or financial advice.

I think though honesty is imperative.

I think we need people including charities to be honest about the limitations and potential benefits in defined contexts about drug treatments for dementia. It’s clearly in the interest of big pharmaceutical companies to offer hope through treatments which may objectively work.

I think we also need to be very open that a diagnosis of dementia isn’t a one path to disaster. There is a huge amount which could and should be done for allowing a person with dementia to live well, and this will impact on the lives of those closest to them.

This might include improving the design of the home, design of the landscape around the home, communities, friends, networks including Twitter, advocacy, better decision-making and control, assistive technology and other innovations.

The National Health Service will need to be re-engineered for persons with a diagnosis of dementia to access the services they need or desire.

Very obviously nobody needs an incorrect ‘label’ of diagnosis. The diagnosis must be made in the right hands, but resources are needed to train medical professionals properly in this throughout the course of their training.

All health professionals – including physicians – need to be aware of non-medical interventions which can benefit the person with dementia. For whatever reason, the awareness of physicians in this regard can be quite poor.

There is no doubt that dementia can be a difficult diagnosis. Not all dementia is Alzheimer’s disease, characterised by symbolic problems in new learning. There are certain things which can mimic dementia for the unaware.

But back to the question – would I rather know? If the diagnosis were correct, yes. But beware of the snake oil salesman, sad to say.

Background to the world of assistive technology

Shibley Rahman 0 Comments

AT1

It is widely propagated in the media that the two major drivers for ‘increased costs of caring’ for the National Health Service (NHS) comprise the ageing population, as well as the increasing rôle that technological advances will play. Both factors are of course subject to ferocious debate regarding the economic sustainability for the NHS, but certainly one potent myth is that assistive technologies are always expensive. This is not true, and the field of assistive technologies is ever expanding.

David Gems (2011) argues that gerotechnology is at the heart of living well in the context of aeing:

[Another] goal of research on ageing is to improve the health of older people. Here, biogerontology is akin to other biomedical research topics, sharing with them the goal of understanding the biological mechanisms that underlie pathology. The particular value of such understanding is that it enables the development of therapeutic treatments, leading to improved health and wellbeing.
A formidable challenge still remains in the relative lack of evidence for pursuing good design principles as well as assistive technologies in improving living well with dementia. For example, the National Dementia Strategy (2009) provides the following.

The evidence base on design principles is sparse, but there is consensus on key principles and a number of good practice checklists are available. There is a more substantial evidence base to show the opportunities offered by assistive technology and telecare to enable people with dementia to remain independent for longer, and in particular to help the management of risk. But the data on newer approaches are still sparse and inconclusive. An evaluation of one scheme demonstrated cost effectiveness and reports of improved quality of life. Large-scale [Department of Health] field trials of such technology are currently under way.

Dementia conditions have the potential to make day-to-day life more difficult. It is clearly very difficult to ‘know’ what an individual feels in terms of his or her wellbeing, even if he or she is unaffected by dementia, even though a conceptual framework of general consciousness is now under way (see, for example, Crick and Koch, 2003). Indeed, as Greenfield (2002) explains, the relationship between the words ‘consciousness’ and ‘mind’ merit attention.

Emotions play a critical role in the evolution of consciousness and the operations of all mental processes (Izard, 2009). Little things like mislaying keys, forgetting to turn off the taps or leaving the gas unlit can prove frustrating or even create hazards.

Orpwood (2007) has argued that mechanisms underlying consciousness and qualia are likely to arise from the information processing that takes place within the detailed micro-structure of the cerebral cortex. It looks at two key issues: how any information processing system can recognise its own activity; and secondly, how this behavior could lead to the subjective experience of qualia. In particular, it explores the pattern processing capabilities of attractor networks, and the way that they can attribute meaning to their input patterns and goes on to show how these capabilities can lead to self-recognition. That paper suggests that although feedforward processing of information can be effective without attractor behaviour, when such behaviour is initiated, it would lead to self-recognition in those networks involved. It also argues that attentional mechanisms are likely to play a key role in enabling attractor behaviour to take place.

There has become a growing feeling that ‘assistive technologies’ (AT) may provide more support for the carer than for the individual with dementia (Kinney et al., 2004), or to ease service provision. However, there have been some noteable exceptions to this focus on security and safety, such as the work of Topo and colleagues (Topo et al., 2004) on the enjoyment of music, and Alm and colleagues (Alm et al., 2005) on general reminiscence.

However, the influence of engineering on the quality of life research has come to a fore in most recent years (for example Orpwood et al., 2007). The INDEPENDENT study has been specifically aimed at designing technology to support quality of life. This collaborative project involved academic engineers, social scientists and architects, together with representatives of user groups and a manufacturer. The design work was based on a comprehensive user survey in which people with dementia themselves highlighted the factors which affected their quality of life. These data were analysed through a series of multidisciplinary workshops through the whole consortium.

There have been, nonetheless, a number of concerns raised about the assistive technology. Roger Orpwood submitted the following comment to the consultation held by the Nuffield Council on Bioethics summarised in ‘Dementia: ethical issues’ between May 2008 and July 2008.

Care professionals often express concern about the use of assistive technology because they see it as something to replace human care. There is no doubt that there is a real danger that some purchasers may see it in this way, either to save money on the part of local authorities, or to reduce the need for direct support on the part of relatives. Those of us involved in developing such equipment see it more as augmenting human care rather than replacing it. However there are some things technology can do that is better than human support. It doesn’t get tired or frustrated, it can operate 24 hours a day, and it clearly doesn’t get upset by the behaviour of the person with dementia. There is evidence from our own work that technology can provide a much clearer picture of how the user is getting on than can care staff. Our last client in London had a major sleep problem that no-one had picked up, but as soon as our sensor network was turned on the problem shouted at us. So technology has an important role to play, and can do some things better than human carers, but it cannot be a replacement for human care, and all the expression of feeling, empathy and understanding that humans can provide. There are major ethical concerns if it is viewed as a replacement.

Suggested readings

Crick F, Koch C. (2003) A framework for consciousness, Nat Neurosci, 6(2), pp. 119-26. [Review.]

Department of Health (2009). Living well with dementia: A NationalDementia Strategy: Putting people first, London: Her Majesty’s Stationery Office, available at: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/168221/dh_094052.pdf

Gems, D. (2011) Tragedy and delight: the ethics of decelerated ageing, Philos Trans R Soc Lond B Biol Sci, 366(1561), pp. 108-12.

Greenfield, S. (2002) Mind, brain and consciousness, British Journal of Psychiatry, 181, pp. 91-93.

Izard, C. (2009) Emotion theory and research: highlights, unanswered questions and emerging issues, Annu Rev Psychol, 60, pp. 1-25.

McKinney, K.M., Kart, C.S., Murdoch, L.D., and Conley, C.J. (2004) Striving to provide safety assistance to families of elders: the SAFE house project, Dementia, 3, pp. 351-370.

Nuffield Council of Bioethics. (2009) Dementia: ethical issues, available at: http://www.nuffieldbioethics.org/sites/default/files/Nuffield%20Dementia%20report%20Oct%2009.pdf.

Orpwood, R. (2007) Short communication: neurobiological mechanisms underlying qualia, Journal of Integrative Neuroscience, 6(4), pp. 523–540.

Topo, R., Maki, K., Saarikalle, K., Clarke, N., Begley, E., Carhill, S., Arsenlind, J., Holthe, T., Morbey, H., Hayes, K., and Gillard, J. (2004) Assessment of music-based multimedia program for people with dementia, Dementia, 3, pp. 331-350.

What is “living well”?

Shibley Rahman 1 Comment

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.