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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.
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]
Foreword to my book ‘Living well with dementia’ 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.
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]
Dr Shibley Rahman on decision-making in dementia
Why bother study decision-making in dementia? This is the issue tackled by a new paper by Prof. Manes’ team in Argentina. The paper from Prof Facundo Manes’ group, published in Nature (Neurology Reviews), indeed does provide the first ever comprehensive review of decision-making in dementia (including the neurodegenerative diseases), that I am aware of. There are certainly various reasons that I can think of, in complete agreement with the authors. Firstly, patients themselves suffer from abnormal decision-making, and this is bound to have an effect on their day-to-day lives. Secondly, it is possible that the medical profession may be able to do something about them one day. This is related to a third powerful reason, that each of the dementias carries with a unique ‘profile badge’ as they’d say on Facebook. This profile is a different type of response to decision-making situations, e.g. more conservative, more risky, more impulsive, more time-consuming, and it’s considered that this has something to do the part of the brain affected.
The link to the paper is here.
Nat Rev Neurol. 2010 Oct 12. [Epub ahead of print] Decision-making cognition in neurodegenerative diseases. Gleichgerrcht E, Ibáñez A, Roca M, Torralva T, Manes F from the Institute of Cognitive Neurology (INECO), Favaloro University, Castex 3293 (1425), Buenos Aires, Argentina.
I first became interested in dementia when I was studying my finals in Cambridge in 1996. Notwithstanding it, I did a Ph.D., awarded by the University of Cambridge in 2001. I was the first person in the world to demonstrate that patients with early behavioural variant frontotemporal dementia displayed a risky profile, but that it was not impulsive, because such patients took a long time to reach their problematic decisions. I note, interestingly, that this has been found to be a possible pattern of behaviour when patients with behaviour variant frontotemporal dementia are driving, anecdotally, but this has never been investigated formally to my knowledge, but these accounts have been very few in number, and do not constitute a reliable observation.
Most relevantly to Prof Manes’ article, I showed that the most likely place to pinpoint the pathology was the orbitofrontal lobe (or ventromedial prefrontal cortex), discussed as being important for ‘action selection’ in decision-making in the model proposed. This is closely connected with the ventral parts of the ‘striatum’ in the midbrain, and it is possible that the orbitofrontal lobe, ventral striatum and the insula have a special role to play in this decision-making, whether normally or abnormally.
The review contains a very nice picture of this ‘brain circuitry’, otherwise known in the trade as ‘distributed neuronal network’. It doesn’t matter if you go for another view of the brain, called ‘localization of function’ – decision-making without the orbitofrontal cortex is like a plasma screen without a cathode ray tube. I’ve got that right, haven’t I?
The most obvious feature of dementia, certainly in patients with Alzheimer’s disease, is memory loss. The authors allude to this being a problem in studying decision-making in dementia; when patients have other more prominent problems, making ‘pure’ decision-making hard to study. I found that my eight patients reported in Brain had no problems with standard tests, including those traditional tests of frontal lobe function.
I thought that this article was a brilliant contribution to the literature, and meticulously researched according to the plethora of published studies we are lucky to have so far.
Bravo!
Dr Shibley Rahman is an expert in behavioural variant frontotemporal dementia.
