Foreword by Prof Facundo Manes

This is a Foreword to my book entitled ‘Living well with dementia‘, a 18-chapter book looking at the concept of living well in dementia, and practical ways in which it might be achieved. Whilst the book is written by me (Shibley), I am honoured that this particular Foreword is written by Prof Facundo Manes.

There are two other Forewords that also make for a brilliant introduction to my book.

Sally-Ann Marciano’s Foreword is here.

Prof John Hodges’ Foreword is here.

Facundo Manes

Prof Manes’ biography is here (translation by Google Translate):

“Facundo Manes is an Argentinian neuroscientist. He was born in 1969, and spent his childhood and adolescence in Salto, Buenos Aires Province. He studied at the Faculty of Medicine, University of Buenos Aires, where he graduated in 1992, and then at the University of Cambridge, England (Master in Sciences). After completing his postgraduate training abroad (USA and England) he returned to the country with the firm commitment to develop local resources to improve clinical standards and research in cognitive neuroscience and neuropsychiatry.

He created and currently directs INECO (Institute of Cognitive Neurology) and the Institute of Neurosciences, Favaloro Foundation in Buenos Aires City. Both institutions are world leaders in original scientific publications in cognitive neuroscience. He is also President of the World Federation of Neurology Research Group on Aphasia and Cognitive Disorders (RGACD) and of the Latin American Division of the Society for Social Neuroscience. Facundo Manes has taught at the University of Buenos Aires and the Universidad Católica Argentina. He is currently Professor of Neurology and Cognitive Neuroscience, Faculty of Medicine and Psychology of the Favaloro University and was appointed Professor of Experimental Psychology at the University of South Carolina, USA.

He has published over 100 scientific papers in the most prestigious original specialised international journals such as Brain and Nature Neuroscience. He has also given lectures at several international scientific fora as the “Royal Society of Medicine” (London) and the “New York Academy of Sciences”, among others. His current area of ​​research is the neurobiology of mental processes. He believes in the importance of scientific disclosure for Society. He led the program ” The Brain Enigmas ” on Argentina TV and wrote many scientific articles in the national press. Finally, Prof. Facundo Manes is convinced that the wealth of a country is measured by the value of human capital , education, science and technology, and that there is the basis for social development.

This biography wants to put on record this journey. And the beginning of the future.”

FOREWORD TO ‘LIVING WELL WITH DEMENTIA’ BY PROFESSOR FACUNDO MANES, PROFESSOR OF NEUROLOGY AND COGNITIVE NEUROSCIENCE AT FAVAROLO UNIVERSITY, BUENOS AIRES, ARGENTINA AND CO-CHAIR OF THE WORLD FEDERATION OF NEUROLOGY APHASIA/COGNITIVE DISORDERS RESEARCH GROUP

A timely diagnosis of dementia can be a gateway to appropriate care for that particular person. Whilst historically an emphasis has been given to medication, there is no doubt that understanding the person and his or her environment is central to dementia care. Shibley’s book will be of massive help to dementia researchers worldwide in my view, as well as to actual patients and their carers, and is great example of the practical application of research. For patients with dementia, the assistance of caregivers can be necessary for many activities of daily living, such as medication management, financial matters, dressing, planning, and communication with family and friends. The majority of caregivers provide high levels of care, yet at the same time they are burdened by the loss of their loved ones. Interventions developed to offer support for caregivers to dementia patients living at home include counselling, training and education programmes, homecare/health care teams, respite care, and information technology based support. There is evidence to support the view that caregivers of patients with dementia especially benefit from these initiatives.

I am currently the Co-Chair of Aphasia/Cognitive Disorders Research Group of the World Federation of Neurology (WFN RG ACD). In this group, we also have a specialist interest in world dementia research. “Wellbeing” is notoriously difficult to define. Indeed, the World Health Organization indirectly defines wellbeing through its definition of mental health:

“Mental health is defined as a state of well-being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community.” (WHO, 2011)

Such a definition necessarily emphasises the potential contribution of a person to society. Some people who participate in research are voluntarily contributing to society. Irrespective of the importance that they assign to their own wellbeing, it is the duty and responsibility of researchers to protect participants’ wellbeing and even to contribute towards it if possible. Participating in research can and should be a positive experience.

I felt that there is much ‘positive energy’ in dementia research around the world. Dementia research is very much a global effort, and many laboratories work in partnership both nationally and internationally, where expertise can be pooled and more progress can be made through collaborative efforts.

In England, the support and funding of world-class health research in the best possible facilities by NIHR, Medical Research Council, the Economic and Social Research Council and the Research Charities is vital to the development of new and better treatments, diagnostics and care. Likewise, the “World Brain Alliance” is working toward making the brain, its health, and its disorders the subject of a future United Nations General Assembly meeting. As part of this effort, a “World Brain Summit” is being planned for 2014, Europe’s “Brain Year,” to create a platform involving professional organisations, industry, patient groups, and the public in an effort to set a World Brain Agenda.

It is certainly appropriate to think these are exciting times, at last, for living well with dementia.

Prof Facundo Manes
Buenos Aires,
Argentina
24th August 2013

References

Mental health: a state of wellbeing.  [October 2011]

http://www.who.int/features/factfiles/mental_health/en/

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Foreword by Sally Marciano

I am very grateful to Sally-Ann for writing a Foreword to my book on ‘Living well with dementia’. The other Foreword has been written by Prof John Hodges, Professor of Cognitive Neurology, NEURA Australia and Emeritus Professor of Behavioural Neurology Cambridge University. Sally-Ann offers an unique perspective regarding her father’s own dementia, especially as she is a trained nurse. Sally-Ann’s journey, I feel, shows how in its purest form a “medical model” can fail patients, and a person-centred approach might be much positive for all. Prof. Hodges and I feel deeply honoured that Sally-Ann has added her enormously valuable contributions here.

 

memory

FOREWORD TO ‘LIVING WELL WITH DEMENTIA’ BY SALLY-ANN MARCIANO, PROJECT SPECIALIST, SKILLS UTILISATION PROJECT, SKILLS FOR HEALTH, BRISTOL.

 

I feel a tremendous honour that I have been asked to write a foreword to Shibley’s outstanding book. I am not an academic but I am a nurse, whose wonderful father died of Alzheimer’s in September 2012. Nothing during my training or nursing career could have prepared me for the challenge that came with supporting my mother in my father’s journey with dementia. I have never met Shibley in person, which makes being asked to write this even more special. What we do have in common, however, is real passion for raising profile of dementia and a hope that we can – one day –improve care for all those living with dementia.

Many people with dementia will live for many years after their diagnosis, and it should be everyone’s ambition in health and social care to ensure that those living with dementia do so as well as possible for all of the remaining years of their life. Diagnosis is just the start of the journey, and, with that, should come full care and support to allow those with dementia to live where they wish, and with their closest present every step of the way.

Sadly my father’s experience revealed a system where no one appeared to take direct responsibility for his care or support. He was, rather, classified as a “social care problem”, and as a result, he had to fund his own care. Even when he was dying, his care was classified as “basic” so that he did not even qualify for funded health care. Our only visit was once-a-year from the memory nurse, and, as his condition declined, my once intelligent, articulate father, who did not even know my name towards the end, needed total care.

Dementia of Alzheimer type destroyed his brain so badly that my father was unable to feed himself, mobilise, or verbalise his needs. He became totally dependent on my mother 24/7. As the condition advanced, my father became increasingly frail, with recurrent chest infections due to aspiration from swallowing difficulties. Each time the GP would be called out, antibiotics prescribed, and so the cycle would begin again. As a nurse, I wanted to see proactive management of my father’s condition. The system locally, however, was quite unable to provide this service. I feel that the dementia of Alzheimer type is a terminal condition, and, as such, should be treated like other similar conditions in care models. What we instead experienced was a “reactive “system of care where the default option was admission to hospital into an environment where my father would quickly decline.

Dementia awareness and training amongst staff must be better; many staff within health and social care will come into contact with people living with dementia as part of their everyday work. That is why I am so excited about Shibley’s book. It is written in a language that is easy to read, and the book will appeal to a wide readership. He has tackled many of the big topics “head on”, and put the person living with dementia and their families at the centre of his writing. You can tell it is written by someone who has observed dementia, has seen its joy, but also felt the pain.

My father was cared for at home right up until he died, mostly through the sheer determination of my mother to ensure she fulfilled his wishes. Not everyone is so fortunate, and for these individuals we really need to be their champion and advocate. Everyone should be allowed to live well with dementia for however long that may be, and, with this book, we can go some way to making this a reality for all.

Sally-Ann Marciano (@nursemaiden)
Bristol, England, United Kingdom
August 8th, 2013

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Leisure activities: reminiscence

keep calm and write poetry

 

Reminiscence therapy is a biographical intervention that involves either group reminiscence work, where the past is discussed generally, or the use of stimuli such as music or pictures. Although closely related to reminiscence therapy, life story work tends to focus on putting together a life story album for an individual.

Reminiscence work was, in fact, introduced to dementia care over 20 years ago, and has taken a variety of forms. At its most basic, it involves the discussion of past activities, events and experiences, usually with the aid of tangible prompts (e.g. photographs, household and other familiar items from the past, music and archive sound recordings).

The essence of reminiscence therapy is described elegantly by Sarah Reed (twitter details below), who has helped to popularise reminiscence approaches through various approaches. Reminiscence can be very beneficial. What a person with dementia has to say about their life experiences is a great way of demonstrating their value as a person – both to them and you, and even when their memory storage system is inconsistent, to really engage with them while they remember happy times is therapeutic and valuable to you both. Old photographs are a great way to get going and since home and family (assuming it was relatively happy) is so central to all our lives, this may be a good place to start.

The development of reminiscence work is usually traced to Butler’s early work (Butler, 1963) on “Life Review”. Butler described “Life Review” as a naturally occurring process where the person looks back on his/her life and reflects on past experiences, including unresolved difficulties and conflicts. This concept was incorporated into psychotherapy for older people, which emphasises that life review can be helpful in promoting a sense of integrity and adjustment. Butler’s seminal work contributed to the change in professional perspectives on reminiscence. Rather than being viewed as a problem, with the older person ’living in the past’, reminiscence was now seen as a dynamic process of adjustment.

Reminiscence work also has a cognitive rationale. People with dementia often appear able to recall events from their childhood, but not from earlier the same day. Accordingly a promising strategy appeared to be to tap into the apparently preserved store of remote memories. By linking with the person’s cognitive strengths in this way, it was thought that the person’s level of communication might be enhanced, allowing the person to talk confidently of their earlier life and experiences. In fact, studies of remote memory suggest that recall for specific events is not relatively preserved; performance across the lifespan is impaired but people with dementia, like all older people, recall more memories from earlier life. Some of the memories represent well-rehearsed, much practised items or anecdotes. The almost complete absence of autobiographical memories from the person’s middle years could lead to a disconnection of past and present, which could contribute to the person’s difficulty in retaining a clear sense of personal identity. From a cognitive standpoint, autobiographical memory and level of communication appear key outcomes.

Evidence suggests that reminiscence therapy can lead to overall improvements in depression and loneliness and promote psychological wellbeing. Research also supports the view that reminiscence therapy, including life story work, can improve relationships between people with dementia and their carers and thereby ‘benefits both’. Other reported benefits include enhancing the opportunity to provide personal and individualised care and assisting the individual move between different care environments such as home to care home, or between care homes.

However, Clarke and colleagues (Clarke et al., 2003) revealed an expressed concern of care staff that psychological types of therapy involving discussion and personal interaction are often not viewed as ‘real work’. Another view explored by Kerr and colleagues (Kerr et al., 2005) suggests that depression in older people is viewed as somehow natural, even when evidence indicates that a range of interventions, many of them psychotherapeutic, can be effective. If reminiscence therapy and life story work are to be used as effective treatments for those with mild to medium cognitive impairment, it is important that the potential value of these psychotherapeutic approaches is understood by care staff and endorsed by those in managerial positions.

The research evidence on reminiscence therapy has examined its impact on older people with dementia and those without the disease. Research by Chiang and colleagues (Chiang et al., 2010) among older people without dementia in institutions in Taiwan, found that there was a positive effect amongst research subjects involved in reminiscence therapy that was not found in the control group. The study found that those participants involved in reminiscence therapy were more sociable, less depressed and showed stronger signs of wellbeing than control group members. The relatively small sample size, its composition (all male) and short-term nature of the study (three months) mean that the results, although favourable, cannot be generalised to the whole population.

The effect of reading poetry on some individuals with dementia can be remarkable.

For example, the Guardian reported that:

“Reading aloud to groups of people with dementia has been found to stimulate memories and imagination – and a new anthology, compiled by Liverpool-based The Reader charity, provides inspiration.

Working in care homes can be challenging, says Katie Clark who runs Reader groups with dementia patients. “There was one woman called Flo who was very frustrated and aggressive. She used to sit in the lounge all scrunched up and tense, leaning forward in her chair, ready to throw her juice at the next passerby. The staff said, ‘Don’t sit with her – she’ll probably try to hit you.’

“So I sat down a safe distance away and said, ‘I’m just going to try reading this poem. If you don’t like it that’s fine, but let’s see what you think of it.’

“And I read the poem through. She relaxed back in her chair, went very quiet, and at the end she said, straight away, ‘read another’.””

 

 

 

Where to find out more

A good place to start on ‘reminiscence therapy’ is following on Twitter @SarahReed_MHR

 

 

Further reading

Butler, R.N. (1963) The life review: an interpretation of reminiscence in the aged. Psychiatry, 26, pp. 65–76.

Chiang, K.J., Chu, H., Chang, H.J., Chung, M.H., Chen, C.H., Chiou, H.Y., Chou, K.R. (2010) The effects of reminiscence therapy on psychological wellbeing, depression, and loneliness among the institutionalised aged, International Journal of Geriatric Psychiatry, 25, 380-388

Clarke, A., Hanson, E.J. and Ross H (2003) Seeing the person behind the patient: enhancing the care of older people using a biographical approach, Journal of Clinical Nursing, 12, 697-706.

Kerr, B., MacDonald, C., Gordon, J. and Stalker, K.  (2005) Effective social work with 0lder people, Edinburgh: Scottish Executive Social Research.

Kiernat, J.M. (1979) The Use of Life Review Activity with Confused Nursing home residents, American Journal of Occupational Therapy, 33, pp. 306–10.

 

 

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Foreword by Prof John Hodges

This is the Foreword to my book entitled ‘Living well with dementia‘, a 18-chapter book looking at the concept of living well in dementia, and practical ways in which it might be achieved. Whilst the book is written by me (Shibley), I am honoured that the Foreword is written by Prof John Hodges.

Prof Hodges’ biography is as follows:

John Hodges trained in medicine and psychiatry in London, Southampton and Oxford before gravitating to neurology and becoming enamoured by neuropsychology. In 1990, he was appointed a University Lecturer in Cambridge and in 1997 became MRC Professor of Behaviour Neurology. A sabbatical in Sydney in 2002 with Glenda Halliday rekindled a love of sea, sun and surf which culminated in a move here in 2007. He has written over 400 papers on aspects of neuropsychology (especially memory and languages) and dementia, plus six books. He is building a multidisciplinary research group focusing on aspects of frontotemporal dementia.

Hodges foreword

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Is moral panic justified?

Red button - Panic

The whole use of language surrounding the diagnosis of dementia matters, not least in the general context of how risk is communicated with the general public. A further problem is that medical terms often get adopted by more general media such as tabloids in a fairly non-discriminatory way. Take for example. the formal definition of an “epidemic” is:

The occurrence in a community or region of cases of an illness, specific health- related behavior, or other health-related events clearly in excess of normal expectancy.”
(Greenland, Last and Porta, 2008)

According to Prof Paradis at Stanford University (2012), presented later by Paradis and colleagues (Paradis et al., 2012) in a public presentation, there has been an apparent ‘epidemic of epidemics‘, with no apparent restriction on the type of disease, on frequency or rates of affliction; there was no growth or contagion threshold. In the forthcoming decades, it is predicted that large numbers of people will enter the ages when the incidence rates of forms of dementia are the highest. People sixty years and over make up the most rapidly expanding segment of the population: in 2000, there were over 600 million persons aged 60 years or over worldwide, comprising just over 10% of the world population, and, by 2050 it is estimated that this figure will have tripled to nearly two billion older persons, comprising 22% of the world population (United Nations, 2007). Stephan and Blossom (2008) from the University of Cambridge state specifically that, “this ageing epidemic, while once limited to developed countries, is expected to become more marked in developing countries.” Supporting this, Sosa-Ortiz, Acosta-Castillo, and Prince (2012) propose that “global population aging has been one of the defining processes of the 20th century, with profound economic, political and social consequences. It is driving the current epidemic of dementia, both in terms of its extent and global distribution.”  It could be that stakeholders in the research community, as Paradis (2011) proposes, are effectively competing for “social capital” (after Bourdieu, 1986). Bourdieu’s definition of ‘capital’ extends fat beyond the notion of material assets to capital that may be social, cultural or symbolic (Bourdieu 1986: cited in Navarro 2006).

epidemic?

In professional circles, the diagnosis of dementia enmeshes a plethora of ethical issues, as reviewed elegantly by Strech and colleagues (Strech et al., 2013):

  • Risk of making a diagnosis too early or too late because of reasons related to differences in age- or gender-related disease frequencies
  • Risk of making inappropriate diagnoses related to varying definitions of mild cognitive impairment
  • Underestimation of the relatives’ experiences and assessments of the person with dementia
  • Adequate point of making a diagnosis:
  • Risk of disavowing signs of illness and disregarding advanced planning
  • Respecting psychological burdens in breaking bad news
  • Underestimation of the relatives’ experiences and assessments of the person with dementia Reasonableness of treatment indications:
  • Overestimation of the effects of current pharmaceutical treatment options
  • Considering challenges in balancing benefits and harms (side- effects)
  • Not considering information from the patient’s relatives
  • Adequate appreciation of the patient:
  • Insufficient consideration of the patient as a person
  • Insufficient consideration of existing preferences of the patient
  • Problems concerning understanding and handling of patient autonomy

A correct early diagnosis may be clarifying, and appreciated by patients even without disease-modifying treatment, and a diagnosis could be valuable since it allows informed planning for the future (Kaduszkiewicz, Bachmann, and van den Bussche, 2008). A ‘positive test result’ indicating dementia of Alzheimer type (“DAT”) will almost certainly lead to extended follow-up., and that individual being plugged into the system. However, at worst, the diagnosis could lead to stigmatisation resulting in feelings of hopelessness, agony, and despair. The rôle of the clinician and support, such as family members, relatives, friends, and other members of the “dementia-friendly community”, will be to mitigate against this risk. From a legal perspective, a test result indicating DAT could potentially affect insurance premiums (sic), and the right for an individual to hold a driver’s licence, depending on the jurisdiction in question. Certainly, the ethical consequences in falsely diagnosed cases could be grave. Furthermore, as Matthson and colleagues explore (Matthson, Brax and Zetterberg, 2008), If a false positive diagnosis results in treatment, any harmful side effect is a serious infringe on the basic medical ethics principle of non-maleficience, accurately summarised in the Latin phrase primum non nocere (“first, do not harm”).

A salutory warning is provided by the well documented discussions of the communication of obesity as a public health issue. The very fast increase in mass media attention to obesity in the U.S. and beyond seems to have many of the elements of what social scientists call a ‘moral panic’. Moral panics are typical during times of rapid social change and involve an exaggeration or fabrication of risks, the use of disaster analogies, and the projection of societal anxieties onto a stigmatized group (Cohen, 1972; Goode and Ben-Yehuda, 1994). Moral panic is a term usually used to describe media presentation of something that has happened that the public will react to in a panicky manner. Moral panic has a tendency to exaggerate statistics and to create a ‘bogey-man’, known as a ‘folk-devil’ in sociological terms. In recent years moral panic and media presentation have covered a wide-ranging number of topics from HIV/AIDS in the 1980s to immigrants into the UK in the 2000’s. Moral panic goes back as far as World War One when the wartime government used the media to portray the Germans in a certain manner in the hope of provoking a response. The conduct of the media is pivotal in all this.

Despite arguably the very weak evidence that obesity represents a health crisis, scientific studies and news articles alike continue to treat the population’s weight gain as an “impending disaster”. A content analysis of 221 press articles discussing scientific studies of obesity found that over half employed alarming metaphors such as ‘time bomb’ (Saguy and Almeling, 2005). The fundamental problem is that there is no adequate treatment for the commonest type of dementia, DAT, and yet authors still talk in a language suggesting that it is possible to treat this epidemic successfully. For example, Korczyn and Vakhapova (2007) in their article entitled, “The prevention of the dementia epidemic”, cite polio as an example of an epidemic which was successfully ‘treated’.

The last epidemic which has been fought with outstanding success is poliomyelitis. In order to win that war, the first step was to identify the cause, the polio virus. The next step, achieved within a few years, was to develop methods to cultivate the virus. Justifiably, J. Enders, T. H. Weller and F. C. Robbins were awarded the Nobel Prize in 1954 for this important discovery, which led to the development of immunization (sic) methods by A. B. Sabin and J. E. Salk.”

This is nothing new. Even the Department of Health (2002) has referred to the “obesity time bomb“:

The growth of overweight and obesity in the population of our country – particularly amongst children – is a major concern. It is a health time bomb with the potential to explode over the next three decades…. Unless this time bomb is defused the consequences for the population’s health, the costs to the NHS and losses to the economy will be disastrous.” (Department of Health 2002)

In a remarkable paper, Bethan Evans (2010) considered the characterisation of obesity as a ‘threat to the future nation’ through considering obesity as a biopolitical problem – which simultaneously addresses the individual body and the ‘population’ (Foucault 1997) – and as a form of “pre-emptive politics”. According to Massumi (2007), pre-emptive action is not legitimised through ‘scientific truths’ established to know the future, but through the (re)production of ‘affective facts’ which make potential futures felt in the present. This ensures ‘any action taken to pre-empt a threat from emerging into a clear and present danger is legitimated by affective fact of fear, actual facts aside’ (Massumi 2007). An example of this use of language is seen in the report of Alzheimer’s Disease International (2012) on stigma in DAT. They clearly wish the reader to project to the future.

Our healthcare and financial systems are not prepared for this epidemic. Dementia is the main cause of dependency in older people 1, and we will not have enough people to care for these large numbers of people with dementia. Globally, less than 1 in 4 people with dementia receive a formal diagnosis  Without a diagnosis, few people receive appropriate care, treatment and support.”

The authors of that particular report cite numerous examples supporting their thesis than an early diagnosis is beneficial. For example, they state that, Scotland’s national dementia plan includes ‘overcoming the fear of dementia’ as one of its plan’s five key goals. This plan seeks to improve access to diagnosis by providing general practitioners with information and resources. If the “dementia epidemic” is a real one, according to Nepal and colleagues (Nepal et al., 2008), policy strategies to deal with the dementia “epidemic” could be informed in a number of ways. The prevalence depends upon interaction of age with other factors (e.g., co-morbidities, genetic or environmental factors) that in turn are subject to change. If onset of dementia could be postponed by modulating its risk factors, this could significantly affect its incidence (e.g. review, Treves and Korczyn, 2011). The need for longitudinal and population-based data that would enable analyses of resource allocation and cost implications has been identified (Wimo and Winblad, 2004). Conducting prospective intervention studies is an established approach to test alternative policy models in the field, but these studies require substantial investment in time and resources. Computer-based dynamic microsimulation models are an ideal alternative to these, as the computer simulations provide an opportunity to test a range of policy options in a virtual world in a shorter time frame.

Nonetheless, this debate is better ‘out than in’, and should be conducted openly for the benefit of those individuals with dementia, and their most immediate people in their community, including partners, friends, relatives or family members. Even charities have been known to use terms such as ‘epidemic’ and ‘timebomb’ in common parlance, and the debate above could go some way into explaining why the word “early” in dementia diagnosis has been replaced by “timely” in most UK circles. As we are all relatively new to the dementia journey, some more than others, it is appropriate we stop to think before rushing at full speed into an uncontrollable situation about communication.

[Thank you very much to @nchadborn and @peterdlrow for useful discussions on this issue through the medium of ‘Twitter’.]

References

Alzheimer’s Disease International (2012) World Alzheimer Report 2012: Overcoming the stigma of dementia, London: Alzheimer’s Disease International, available at: http://www.alz.co.uk/research/WorldAlzheimerReport2012.pdf.

Bourdieu, P. (1986) The forms of capital. In J. Richardson (Ed.) Handbook of Theory and Research for the Sociology of Education (New York, Greenwood), 241-258.

Cohen, Stanley. (1972) Folk Devils and Moral Panics, Routledge: New York.

Department of Health (2002) Annual report of the chief medical officer 2002: Health check, on the state of the public health, available at: http://webarchive.nationalarchives.gov.uk/+/www.dh.gov.uk/en/PublicationsAndStatistics/Publications/AnnualReports/DH_4006432.

Evans, B. (2010) “Anticipating fatness: childhood, affect and the pre-emptive ‘war on obesity’”, Trans Inst Br Geogr, 35, pp. 21–38.

Foucault, M. (1997) “Society must be defended: lectures at the Collège de France 1975–76 Translated by Macey, D.”, London: Penguin.

Goode E, Ben-Yehuda N. Moral Panics: The Social Construction of Deviance. Malden, MA: Blackwell Publishers, 1994.

Greenland, S., Last. J.M., and Porta, M.S.(2008) A dictionary of epidemiology, New York: Oxford University Press.

Kaduszkiewicz, H., Bachmann, C., and van den Bussche, H. (2008) “Telling “the truth” in dementia-Do attitude and approach of general practitioners and specialists differ?”, Patient Education and Counseling, vol. 70, no. 2, pp. 220–226.

Korczyn, A.D., and Vakhapova, V. (2007) “The prevention of the dementia epidemic”, J Neurol Sci, 15. pp. 257(1-2):2-4.

Massumi, B. (2007) The future birth of the affective fact: the political ontology of threat forthcoming, in Pollock ,G. (ed ), The ethics and politics of virtuality and indexicality, Cambridge:  Cambridge University Press.

Mattsson, N., Brax, D., and Zetterberg, H. (2010) “To know or not to know: ethical issues related to early diagnosis of Alzheimer’s disease”, Int J Alzheimers Dis,. pii: 841941.

Navarro, Z. (2006) ‘In Search of  Cultural Intepretation of Power’, IDS Bulletin 37(6): 11-22.

Nepal, B., Ranmuthugala, G., Brown, L., and Budge M. (2008) “Modelling costs of dementia in Australia: evidence, gaps, and needs”, Aust Health Rev, 32(3), pp. 479-87.

Paradis, E. (2011) Changing meanings of fat: Fat, obesity, epidemics and America’s children, Stanford University unpublished dissertation.

Paradis, E., Albert, M., Byrne, N., and Kuper, A. (2012) Changing Meaning of Epidemic and Pandemic in the Medical Literature, 1900-2010. American Sociological Association Conference, Denver, CO: August, available at: http://www.eliseparadis.com/files/EoE-DenverV1.pdf.

Saguy, A.C., and Almeling, R. (2005) ‘Fat devils and moral panics: news reporting on obesity science.’ Presented at the SOMAH workshop. UCLA Department of Sociology. June 1.

Sosa-Ortiz, A.L., Acosta-Castillo, I., and Prince, M.J. (2012)  “Epidemiology of dementias and Alzheimer’s disease”, Arch Med Res., 43(8), pp. 600-8.

Stephan, B., and Brayne, C. (2008) Prevalence and projections of dementia, in: Excellence in Dementia Care: Principles and Practice (eds. Downs, M. and Bowers, B), Maidenhead (UK): Open University Press (McGraw-Hill Education).

Strech, D., Mertz, M., Knüppel, H., Neitzke, G., and Schmidhuber, M. (2013) “The full spectrum of ethical issues in dementia care: systematic qualitative review”, Br J Psychiatry, 202, pp. 400-6

Treves, T.A., and Korczyn, A.D. (2012) “Modeling the dementia epidemic”, CNS Neurosci Ther., 18(2):175-81.

Wimo, A., and Winblad, B. (2004) “Economic aspects on drug therapy of dementia”, Curr Pharm Des, 10, pp. 295-301.

United Nations Department of Economic and Social Affairs, Population Division (2007) World Population Ageing 2000. Repository at: http://www.un.org/esa/population/publications/publications.htm.

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Where is the policy generally heading?

he most ‘perfect’ scenario for dementia screening would be to identify dementia in a group of individuals who have absolutely no symptoms might have subtle changes on their volumetric MRI scans, or might have weird protein fragments in their cerebrospinal fluid through an invasive lumbar culture; and then come up with a reliable way to stop it in its tracks  The cost, practicality and science behind this prohibit this approach.

There are well defined criteria for screening, such as the “Wilson Jungner criteria“. Prof Carol Brayne from the University of Cambridge has warned against the perils of backdoor screening of dementia, and the need for evidence-based policy, publicly in an article in the British Medical Journal:

“As a group of clinical and applied researchers we urge governments, charities, the academic community and others to be more coordinated in order to put the policy cart after the research horse. Dementia screening should neither be recommended nor routinely implemented unless and until there is robust evidence to support it. The UK can play a unique role in providing the evidence base to inform the ageing world in this area, whilst making a positive difference to the lives of individuals and their families in the future.”

However, a problem has arisen in how aggressively to find new cases of dementia in primary care, and a lack of acknowledgement by some that incentivising dementia diagnosis might possibly have an untoward effect of misdiagnosing (and indeed mislabelling) some individuals, who do not have dementia, with dementia. Unfortunately there are market forces at work here, but the primary consideration must be the professional judgment of clinicians.

Diagnosing dementia

There is no single test for dementia.

A diagnosis of dementia can only be confirmed post mortem, but there are ‘tests’ in vivo which can be strongly indicative of a specific dementia diagnosis (such as brain biopsy for Variant Creutzfeld-Jacob disease or cerebral vasculitis), or specific genetic mutations on a blood test (such as for relatively rare forms of the dementia of the Alzheimer type).

Memory vs non-memory functions in CANTAB

CANTABmobile is a new touchscreen test for identifying memory impairment, being described as a ‘rapid memory test’. The hope is that memory deficits might be spotted quickly in persons attending the National Health Service, and this is indeed a worthy cause potentially. In the rush to try to diagnose dementia quickly (and I have explained above the problem with the term “diagnose dementia”), it is easy to conflate dementia and memory problems. However, I demonstrated myself in a paper in Brain in 1999 using one of the CANTAB tests that patients with behavioural variant frontotemporal dementia (bvFTD) were selectively impaired on tests sensitive to prefrontal lobe function involving cognitive flexibility and decision-making. I demonstrated further in a paper in the European Journal of Neuroscience in 2003 that such bvFTD patients were unimpaired on the CANTAB paired associates learning test.

bvFTD is significant as it is a prevalent form of dementia in individuals below the age of 60. The description given by Prof John Hodges in the current Oxford Textbook of Medicine chapter on dementia is here. Indeed, this chapter cites my Brain paper:

“Patients present with insidiously progressive changes in personality and behaviour that refl ect the early locus of pathology in orbital and medial parts of the frontal lobes. There is often impaired judgement, an indifference to domestic and professional responsibilities, and a lack of initiation and apathy. Social skills deteriorate and there can be socially inappropriate behaviour, fatuousness, jocularity, abnormal sexual behaviour with disinhibition, or theft. Many patients are restless with an obsessive–compulsive and ritualized pattern of behaviour, such as pacing or hoarding. Emotional labiality and mood swings are seen, but other psychiatric phenomena such as delusions and hallucinations are rare. Patients become rigid and stereotyped in their daily routines and food choices. A change in food preference towards sweet foods is very characteristic. Of importance is the fact that simple bedside cognitive screening tests such as the Mini-Mental State Examination (MMSE) are insensitive at detecting frontal abnormalities. More detailed neuropsychological tests of frontal function (such as the Wisconsin Card Sorting Test or the Stroop Test) usually show abnormalities. Speech output can be reduced with a tendency to echolalia (repeating the examiner’s last phrase). Memory is relatively spared in the earl  stages, although it does deteriorate as the disease advances. Visuospatial function remains remarkably unaffected. Primary motor and sensory functions remain normal. Primitive refl exes such as snout, pout, and grasp develop during the disease process. Muscle fasciculations or wasting, particularly affecting the bulbar musculature, can develop in the FTD subtype associated with MND.”

Memory tests, mild cognitive impairment and dementia of Alzheimer type

Nobody can deny the undeniable benefits of a prompt diagnosis, when correct, of dementia, but the notion that not all memory deficits mean dementia is a formidable one. Besides, this tweeted by Prof Clare Gerada, Chair of the Royal College of General Practitioners, to me this morning I feel is definitely true,

normal ageing

A political drive, almost in total parallel led by the current UK and US governments, to screen older people for minor memory changes could potentially be leading to unnecessary investigation and potentially harmful treatment for what is arguably an inevitable consequence of ageing. There are no drugs that prevent the progression of dementia according to human studies, or are effective in patients with mild cognitive impairment, raising concerns that once patients are labelled with mild cognitive deficits as a “pre-disease” for dementia, they may try untested therapies and run the risk of adverse effects.

The idea itself of the MCI as a “pre-disease” in the dementia of Alzheimer type is itself erroneous, if one actually bothers to look at the published neuroscientific evidence. A mild cognitive impairment (“MCI”) is a clinical diagnosis in which deficits in cognitive function are evident but not of sufficient severity to warrant a diagnosis of dementia (Nelson and O’Connor, 2008).It is claimed that on the CANTABmobile website that:

statement

However, the evidence of progression of MCI (mild cognitive impairment) to DAT is currently weak. It might be attractive to think that MCI is a preclinical form of dementia of Alzheimer Type, but unfortunately the evidence is not there to back this claim up at present: only approximately 5-10% and most people with MCI will not progress to dementia even after ten years of follow-up (Mitchell and Shiri-Feshki, 2009).

An equally important question is also the specificity and sensitivity of the CANTABmobile PAL test. Quite a long explanation is given on their webpage again:

Specificity and sensitivity of PAL

However, the reference that is given is unrelated to the data presented above. What should have appeared there was a peer-reviewed paper analysing sensitivity and sensitivity of the test, across a number of relevant patient groups, such as ageing ‘normal’ volunteers, patients with geriatric depression, MCI, DAT, and so on. A reference instead is given to a paper in JAMA which does not even mention CANTAB or CANTABmobile.

NICE, QOF and indicator NM72

A description of QOF is on the NICE website:

“Introduced in 2004 as part of the General Medical Services Contract, the QOF is a voluntary incentive scheme for GP practices in the UK, rewarding them for how well they care for patients.

The QOF contains groups of indicators, against which practices score points according to their level of achievement. NICE’s role focuses on the clinical and public health domains in the QOF, which include a number of areas such as coronary heart disease and hypertension.

The QOF gives an indication of the overall achievement of a practice through a points system. Practices aim to deliver high quality care across a range of areas, for which they score points. Put simply, the higher the score, the higher the financial reward for the practice. The final payment is adjusted to take account of the practice list size and prevalence. The results are published annually.”

According to guidance on the NM72 indicator from NICE dated August 2013, this indicator (“NM72”) comprises the percentage of patients with dementia (diagnosed on or after 1 April 2014) with a record of FBC, calcium, glucose, renal and liver function, thyroid function tests, serum vitamin B12 and folate levels recorded up to 12 months before entering on to the register  The timeframe for this indicator has been amended to be consistent with a new dementia indicator NM65 (attendance at a memory assessment service).

Strictly speaking then QOF is not about screening as it is for patients with a known diagnosis of dementia. If this battery of tests were done on people with a subclinical amnestic syndrome as a precursor to a full-blown dementia syndrome with an amnestic component, it might conceivably be ‘screening’ depending on how robust the actual diagnosis of the dementia of those individuals participating actually is. As with all these policy moves, it is very easy to have unintended consequences and mission creep.

According to this document,

“There is no universal consensus on the appropriate diagnostic tests to be undertaken in people with suspected dementia. However, a review of 14 guidelines and consensus statements found considerable similarity in recommendations (Beck et al. 2000). The main reason for undertaking investigations in a person with suspected dementia is to exclude a potentially reversible or modifying cause for the dementia and to help exclude other diagnoses (such as delirium). Reversible or modifying causes include metabolic and endocrine abnormalities (for example, vitamin B12 and folate deficiency, hypothyroidism, diabetes and disorders of calcium metabolism).

The NICE clnical guideline on dementia (NICE clinical guideline 42) states that a basic dementia screen should be performed at the time of presentation, usually within primary care. It should include:

  • routine haematology
  • biochemistry tests (including electrolytes, calcium, glucose, and renal and liver function)
  • thyroid function tests
  • serum vitamin B12 and folate levels.”

It is vehemently denied that primary care is ‘screening’ for dementia, but here is a QOF indicator which explicitly tries to identify reversible causes of dementia in those with possible dementia.

There are clearly issues of valid consent for the individual presenting in primary care.

Prof Clare Gerada has previously warned to the effect that it is crucial that QOF does not “overplay its hand”, for example:

“QOF is risking driving out caring and compassion from our consultations. We need to control it before it gets more out of control – need concerted effort by GPC and RCGP.”

Conclusion

Never has it been more important than to heed Prof Brayne’s words:

“As a group of clinical and applied researchers we urge governments, charities, the academic community and others to be more coordinated in order to put the policy cart after the research horse.”

In recent years, many glib statements, often made by non-experts in dementia, have been made regarding the cognitive neuroscience of dementia, and these are distorting the public health debate on dementia to its detriment. An issue has been, sadly, a consideration of what people (other than individual patients themselves) have had to gain from the clinical diagnosis of dementia. At the moment, some politicians are considering how they can ‘carve up’ primary care, and some people even want it to act as a referral source for private screening businesses. The “NHS MOT” would be feasible way of the State drumming up business for private enterprises, even if the evidence for mass screening is not robust. The direction of travel indicates that politicians wish to have more ‘private market entrants’ in primary care, so how GPs handle their QOF databases could have implications for the use of ‘Big Data’ tomorrow.

With headlines such as this from as recently as 18 August 2013,

£! headline

this is definitely ‘one to watch’.

Further references 

Beck C, Cody M, Souder E et al. (2000) Dementia diagnostic guidelines: methodologies, results, and implementation costs. Journal of the American Geriatrics Society 48: 1195–203

Mitchell, A.J., and Shiri-Feshki, M. (2009) Rate of progression of mild cognitive impairment to dementia -meta-analysis of 41 robust inception cohort studies. Acta Psychiatr Scand, 119(4), pp. 252-65.

Nelson, A.P., and O’Connor, M.G. (2008) Mild cognitive impairment: a neuropsychological perspective, CNS Spectr, 13(1), pp. 56-64.

National Institute for Health and Clinical Excellence (2006) Dementia. Supporting people with dementia and their carers in health and social care. NICE clinical guideline 42

Many thanks to @val_hudson for a useful critical comment about an earlier version of this blogpost.

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