Interview
Interview with Professor John Bond, 30 April 2013
Dementia 2015, Vol. 14(3) 343–350 ! The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301214562141 dem.sagepub.com
Kevin R Peters and Stephen Katz Background Professor John Bond is a sociologist who over the last four decades has been a foremost researcher and author in the fields of social gerontology, policy, epidemiology, public health and the sociology of medicine. He is now Emeritus Professor of Social Gerontology and Health Services Research at Newcastle University and his many books, articles, edited collections and team projects have yielded a consistently innovative and critical literature about the key issues of ageing in modern societies. In drawing together critical and qualitative sociological perspectives and the health professions, his work has been highly regarded for demonstrating the impacts of structural processes on the everyday lives and experiences of older people in care environments. His ideas on Mild Cognitive Impairment (MCI) and dementia, frequently published with the leading experts in the field, have profoundly recast how we should approach the relationship between research, practice and quality of life in the context of an ageist culture. Question: Prof. Bond, thank you for talking to us today. Can you tell us about your career background and how you became interested in mild cognitive impairment in particular? JB: I graduated in sociology and social policy from the University of Essex in 1969 and took up a research assistantship with Peter Townsend who is a well-known figure in policy and ageing studies. This is when I became curious about ageing as a social issue. Then I got a job as a Senior Research Officer for the Scottish Health Service in Edinburgh in the mid1970s, in the Information Services Division, during which time I surveyed the needs of older people. It was then that I began to understand the emerging issue of cognitive impairment. Since that time, I have been interested in the way cognitive impairment is both socially constructed and responded to by older people. I then became engaged with the Medical Research Council (MRC) Cognitive Function and Ageing Study in the UK when it was set up in 1990 and continued into the 2000s (www.cfas.ac.uk). Working with epidemiologists, I was involved in the part of a study that assessed the carers’ needs, from a range of backgrounds, since there were various professional debates at the time about caring and the boundaries between normal and abnormal cognitive ageing. Later in the 1990s I thought and wrote more about how cognitive impairment had become medicalised. My interest in MCI itself began through conversations with my colleague Ian McKeith, a clinical researcher as well as a geriatric psychiatrist, who worked on Lewy-body disease. As
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an old-age psychiatrist Ian focuses on what cognitive impairment means to older people and we both became concerned with the personal implications of the label MCI, although MCI has been known by other terms for many years. I also did work with Blossom Stephan, where we identified at least 20 different algorithms for looking at early cognitive impairment. However, MCI as a labeled disease entity developed rapidly due to the emerging research in the United States and so the need to examine it closely became important. Later, we got a grant from the Economic and Social Research Council to look at the impact of MCI for the international community, and there I worked with Tiago Moreira, Carl May, and Lynne Corner (see selected publications below). Question: As a sociologist studying ageing and cognitive health, did you feel marginal in any way when working in a largely medical and scientific gerontological community? JB: I was fortunate because when I was working in the Scottish office and here in Newcastle I have had the opportunity to talk with psychiatrists who dealt with older people, not as neurologists, but as ‘people doctors.’ They neither worried about me not being a clinician nor minded any challenges I presented as a sociologist. I never felt marginalised and as I have built close working relationships with doctors and psychiatrists, they have been on an equal basis. Question: Prof. Bond, you are known for portraying a certain critical view of MCI as a socially constructed diagnostic category. But do you think MCI is still useful or might be useful into the future as newer treatments for pre-dementia conditions become available? JB: My view is that MCI is useful to psychiatrists, neurologists and clinicians, but it is of less value to the person being diagnosed with it. Certainly local research bears out my view as one of our recent studies illustrates.1 We talked to people who had gone through the assessment process, and many of them indicated that they weren’t really sure what the assessments meant for them. The clinicians told them what the scans indicated, and usually advised them just to return for more tests in a couple of years. This arrangement does not strike me as being very valuable for the individual who comes to the clinic with a complaint or thinks something is wrong. The epidemiological research we did with Blossom Stephan’s work involved analysing longitudinal data about the transition from a MCI category and we used the MCI criteria from the Mayo Clinic as well as other criteria which we had developed earlier.2 So we were able to estimate the number of people who, after 2 years, transitioned to dementia or appeared as though they were going to develop it. The proportion was approximately 50:50; however, a ratio which corresponds with my own experience encountering people who had been diagnosed with MCI but neither transitioned to dementia nor appeared to be likely to transition in the future. What was going on there? This is the kind of conversation I have had with Ian McKeith because, again, we remain concerned about the personal and ethical implications of a MCI diagnosis if it was received and interpreted by the individual as a predictor of dementia. We can say that, yes, there is some stage in life when cognition can become abnormal and which might indicate the development of dementia, but this doesn’t mean that our current diagnostic categories and criteria for pre-dementia conditions are especially useful.
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Question: Your response leads us to the question of intervention. If dementia is a disease, then medical logic dictates that we should expect early warning signs and symptoms. As with other serious diseases, early intervention is assumed to be beneficial and preventative, thus various drugs and biomarker tests are used as forms of intervention. What is your view of such early signs, symptoms and interventions for AD? Are they helpful or are they part of a trend towards medicalising cognitive decline at older ages? JB: My understanding of dementia is that it is not just one disease, but rather a number of diseases interacting in various ways. However, for biological and biomedical researchers, their work is to categorise clinical conditions in a way that makes them amenable to interventions. My colleague in Newcastle, Elaine Perry, first identified the cholinergic hypothesis at the same time as Peter Whitehouse did, within a framework of benefit and philosophically I have no issue with pursuing an intervention that promises to be beneficial and preventative. The disease model, which uses vaccination, for example, is very straightforward. If there was an effective vaccination for one or more of the various dementias there would be no argument about benefit, just as there is no argument about vaccinations for measles or tuberculosis from a health perspective. However, at the moment this kind of treatment or intervention does not appear on the horizon for dementia. In the end, the cholinergic hypothesis of AD has not shown much practical benefit. When we were doing our research on international perspectives on MCI, it happened at the time when Ronald Petersen published a paper on donepezil and Vitamin E that showed no improvement in MCI.3 We attended two conferences and at the second one where Dr Petersen was presenting his paper, suddenly Pfizer disappeared off the screen, while its representatives had flooded the first conference promoting various forms of donepezil. So we have the question of the driver behind research hypotheses and here is where I worry about the impact of the commercial interests of the pharmaceutical companies on the clinical interests of patients. In addition to being aware of the commercial drivers, we also need to critically investigate the research findings themselves that situate MCI as an indicator of further dementia. At this time, we do not have the measurement tools for MCI or dementia that would confirm their universal connection in consistently valid ways. Question: Regarding your comments about the problems of diagnostic and testing inconsistency for patients, some of the leading MCI researchers claim that too many clinicians use MCI diagnostic criteria after the fact rather than prospectively, which they view as a cause of the high instability of MCI that you have criticised. What do you think of this kind of commentary? JB: My first response is that our research is community based, yet much of the defensive MCI commentary is clinically based. Second, the question here is whether or not it is worth screening people with MCI or cognitive impairment in order to be able to intervene. And it is here in the actual practical contexts that we have this mismatch of labels. The pharmaceutical companies are also looking for widespread, community application; if donepezil had been shown to have an impact it would have been the biggest market for Pfizer for decades because of the enormous size of both the problem it addresses and the subject population. We also have to keep in mind that the top researchers, whose work is mainly clinically based and removed from the community in contrast to front-line and
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general practitioners, have the latest multiple testing technologies, teams of support workers and researchers, and large funding resources. Question: In relation to the community and the clinic, you have written about the neglect of people’s own experiences and perspectives in the research literature. What, now, do you think are the best ways to bring people’s own voices and experiences into the research world, especially around cognitive health and ageing? JB: I am ambivalent about this research issue because, as a human being and a sociologist, of course, I have included older people’s voices and wish to continue doing so. However, one of the problems is that when older people are engaged, as consumers or as patients, we do take the risk that providing more information to them can increase their anxiety and reduce overall benefits. Certainly on ethical grounds people should be involved and consulted, but I can also sympathise with traditional medical paternalism that relieved patients of all the possible bad news. In the research with which I’ve been involved, people with cognitive impairment or their carers were engaged in the process as much as possible. As you are aware, in qualitative research, the researchers set the questions and sometimes these are not what the research participants want to hear or address. Focus groups with the public can reveal that they have different kinds of concerns; for example, in a recent study the people really wanted to know whether or not they have MCI or dementia and if so, what will their lives be like into the future. These are not question clinicians can honestly answer, since they can only talk in terms of general instances. My point is that if people want answers to these kinds of unanswerable questions, then researchers should consider this issue before engaging them in interactive contexts. No one really likes tests or waiting long for test results, especially if the medical response is that nothing can be done except to return for more tests later. And, as we know, our cognitive tests are set up so that everybody at some point fails them to a certain degree, although they are certainly more pleasant than lumbar punctures. Question: Given your work and experience in public health, what do you think of current health promotion images and campaigns around cognitive health? Is there a new lifestyle that has added the care of the mind to the care of the body as part of successful ageing? JB: I am aware of the positive benefits and lasting value, as demonstrated epidemiologically, of certain lifestyle behaviours, especially exercise. The intentional public health messages with advice to do more exercise, along with eating sensibly, not smoking and drinking moderately, are the kind I would want more people to see. The problem is the commercialisation of such messages in terms lifestyle products, fad diets, and expensive but not necessarily beneficial recreational activities. I suspect that such commercialisation will undoubtedly alight on cognitive health because as we age, cognitive crises will become a central anxiety into the future. We also have to differentiate between the actual usefulness of cognitive testing and the realistic impacts of physical exercise, diet, and environment on cognitive health. Question: If exercise and diet advice is commonsensical, then perhaps we do not need frightening medical labels to convince us to change our behaviour. However, research such as The Risk Evaluation and Education for Alzheimer’s disease (REVEAL) Study,4 where people were informed of their ApoE E4 status, demonstrated that such individuals did not
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make any significant changes to their diet or exercise based on their elevated risk for AD. They did, however, consume more dietary supplements (e.g. gingko biloba, vitamin B, etc.) even though there is no evidence that such supplements are helpful in reducing the risk for AD. JB: That’s an interesting dilemma and you’ll find it is probably the same situation if you look at heart disease or other genetically identifiable risk factor groups, which is that people do not respond to the risk factor information in predictable, rational ways. Really the issue around exercise and diet has little or nothing to do with personal motivation; even though this is what we are told because it creates the appearance that we can control our conditions of life. However, we also know that the uncontrollable factors of social housing conditions, the commercialisation and adulteration of food products, accessibility to safe environments, air and water quality, etc., are enormous determinants of health. The latest one from our government in the UK is that people should avoid drinking sweetened drinks every day because it increases the risk of diabetes tenfold. But our very same society supports the production, promotion and widespread consumption of such drinks, even for children, on a daily basis. We need social and global change to make a difference; otherwise, the focus on individualising and personalising health risks is self-defeating. Question: This was certainly the case with smoking in North America; it took governmental laws against smoking along with consumer tax hikes and age restrictions, to reduce tobacco use. JB: And that has worked in Europe too, where smoking in public places is banned as is selling tobacco to minors. Question: There are also concerns here in North America about the growing expenses of maintaining cognitive as well as physical health amongst ageing populations. Is this an issue in the UK as well? JB: If we are living longer and face greater prospects of cognitive dysfunction, and if nursing care is what the majority of people with dementia receive, then yes, it is expensive and will become more so. However, the popular imagery neglects the fact that increasing health care costs are actually outside of the cognitive field and more to do to with technologies that predict or prevent heart disease and things of that nature. But the Alzheimer’s Society in the UK and America has been using the fear scenario in order to generate research income. Their argument is that if diseases such as breast cancer can be prevented and managed when adequate funding is devoted to them, then we can do the same with dementia. The difference with dementia is the ageing factor, as the epidemiologists suggest, that if we live long enough we are going to experience various forms of cognitive impairment that will be expensive to manage. Question: A recommendation that is appearing more frequently is that front-line physicians and general practitioners should be better trained to identify cognitive problems before they become expensive in terms of care. Would you agree with this recommendation? JB: The epidemiology suggests otherwise, that once you have a decline, whatever the decline is and if you don’t die from something else, then you will end up in a very
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expensive care situation for dementia. However, it may be that the front-line physicians need to be better trained for identifying cognitive problems, not necessarily to save expenses but to make management for individual patients more sensible and suitable for them. Physicians, especially if they know the patients and their families, can help with explaining problems and preparing for late-life decisions. They can also reassure families and carers on how to deal with declining conditions, while remaining focused on the person at the centre of it. Question: Prof. Bond, would you say there is anything particularly innovative in the UK today which you would consider as leading the way into the future for ageing, MCI and/or dementia? JB: I don’t think so anymore. I would have said that 20 years ago the role of old age psychiatrists was innovative because they looked at the whole person and not just the dementia. They also encountered dementia in the context of other diseases and conditions within people’s social networks. Now, unfortunately, this part of psychiatry is becoming more medicalised and influenced by neurologists, who have increasing interests in brain scans and other physical biomarkers, which moves psychiatry away from holistic models, although I still have some great colleagues who continue to work in those models. As you are aware, the British advocate Tom Kitwood and his promotion of ‘person-centred’ in the Alzheimer’s field was quite a challenge to the pharmaceutical companies. His ideas have actually remained very current some 20 years later as the idea of person-centred care has informed national policy and remains part of the national dementia strategy. However and despite its innovation and popularity, I do not see person-centred care practices widely established here in clinical settings. While good nursing homes embrace person-centered care by respecting the autonomy and privacy of their residences, 95% of the homes also lack the time and the budgets to carry out such care fully. Also, the ratio of patients to caregivers is growing, which also affects person-centred care. As I read the international literature and talk to people from across the world, it seems that we are coming up with similar ideas in relation to the challenges presented by healthcare systems. So in that sense we are still innovators. In the UK, there is socialised medical coverage and patients do not have to worry about affording access to care, while this is not the case in some European countries and certainly not in the United States. So innovation in this sense is also about matching good social supports to evolving health problems. Question: Being a qualitative sociologist, you come across the consequences of the divide between home-care and residential care. In our country, Canada, people are encouraged to stay in their homes for as long as possible for emotional and cost-saving reasons. Yet, cognitive impairment can create risks for people staying at home in terms of safety especially. What do you think of this ‘stay-at-home’ and ‘ageing-in-place’ emphasis for cognitive impaired individuals? JB: The issue of safety is very important and in the last few years in the UK we have implemented The Mental Capacity Act (2005), where people have the right to decide to stay in their homes, but they are not advised to do so if there are ‘safety’ issues. But what are the safety issues? If a safety issue is about somebody living in a place where they are likely to create a fire, then how does one calculate this probability of risk? And what kinds of environments are more at risk for being unsafe than others? And how is age calculated
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into safety risks? I think there is often too much risk assessment built into the health professional’s behavior because they have to cover their backs too. If a person has an accident or dies at home, when it could have been prevented or not happened at all in an institution, then who is to blame? So the ageing-in-place policy comes with a certain clinical surveillance and risk-insurance model. When I talk to my economist colleagues, they tell me that if costing is done properly, that is the whole package of housing, property, and in-house care costs is included, then community care does not necessarily save money. So I am not sure that the desire to stay at home is due to financial exigency or just the desire to stay at home for emotional reasons. Question: There is also the assumption that family members will be carers. JB: This is true. We do assume that family members, especially women, along with other close friends and community members become sort of natural carers. Today there are also grandparents who look after children much more than they would have in the past. But domestic life is also a domain that can be very innovative, especially where families do not like to see their older relatives or friends suffer. All manner of public/private boundary issues become introduced here that have significant implications for health across the life course. Question: You mentioned that you are retiring now, or semi-retired. What are your plans for the future? JB: I work on a part-time basis writing, mentoring and supporting other people, working with some PhD students completing their programmes, and finishing any research projects. Although, as you know, you can continue tying up loose ends of research projects for years. Otherwise, future plans are to reinvent myself as something else and doing things which I’ve been dabbling with all my working life but haven’t had time to do properly until now. Of course, none of this will stop my curiosity in reading and thinking about the critical issues of our time. Question: Prof. Bond, we certainly appreciate all the work you have done in bringing together a critical inquiry of ageing across political, sociological, medical and gerontological fields. Your kind of critical gerontology, the kind that questions itself, has made a real difference to how we view ageing populations. Thank you so much for all your work and this valuable conversation. Enjoy your retirement. JB: Thank you and good luck with your project.
Notes 1. Samsi, K., Abley, C., Campbell, S., Keady, J., Manthorpe, J., Robinson, L., Watts, S., & Bond, J. (2014). Negotiating a labyrinth: Experiences of assessment and diagnostic journey in cognitive Impairment and dementia. International Journal of Geriatric Psychiatry, 29(1): 58–67. 2. Stephan, B. C. M., Brayne, C., McKeith, I. G., Bond, J., & Matthews, F. E. (2013). Mild cognitive impairment in the older population: Who is missed and why does it matter? International Journal of Geriatric Psychiatry, 23(8): 863–871.
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3. Petersen, R. C., Thomas R. G., Grundman, M., Bennett, D., Doody, R., Ferris, S, . . . Thal L. J. (2005). Vitamin E and donepezil for the treatment of mild cognitive impairment. New England Journal of Medicine, 352, 2379–2388. 4. Vernarelli, J. A., Roberts, J. S., Hiraki, S., Chen, C. A., Cupples, L. A., & Green, R. C. (2010). Effect of Alzheimer disease genetic risk disclosure on dietary supplement use. The American Journal of Clinical Nutrition, 91(5), 1402–1407.
Selected Publications Abley, C., Bond, J., & Robinson, L. (2011). Improving interprofessional practice for vulnerable older people: Gaining a better understanding of vulnerability. Journal of Interprofessional Care, 25(5), 359–365. Bond, J., Peace, S., Dittmann-Kohli, F., & Westerhof, G. (2007). Ageing in society: European perspectives on gerontology. London, UK: Sage Publications. Bond, J., & Corner, L. (2006). The future of well-being: quality of life of older people in the twenty-first century. In J. A. Vincent, C. Phillipson, & M. Downs (Eds.), The futures of old age (pp. 161–167). London, UK: Sage Publications. Bond, J., Stave, C., Sganga, A., Vincenzino, O., O’Connell, B., & Stanley, R. L. (2005). Inequalities in dementia care across Europe: Key findings of the Facing Dementia Survey. The International Journal of Clinical Practice, 59(s146), 8–14. Bond, J., Corner, L., Lilley, A., & Ellwood, C. (2002). Medicalisation of insight and caregivers’ response to risk in dementia. Dementia, 1(3), 313–328. Manthorpe, J., Samsi, K., Campbell, S., Abley, C., Keady, J., Bond, J., . . . Iliffe, S. (2011). The transition from cognitive impairment to dementia: Older people’s experiences. London, UK: National Health Service. Moreira, T., & Bond, J. (2008). Does the prevention of brain ageing constitute anti-ageing medicine? Outline of a new space of representation for Alzheimer’s Disease. Journal of Aging Studies, 22(4), 356–365. Moreira, T., May, C., & Bond, J. (2009). Regulatory objectivity in action: Mild cognitive impairment and the collective production of uncertainty. Social Studies of Science, 39(5), 665–690.
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Interview with Professor John Bond, 30 April 2013
Dementia 2015, Vol. 14(3) 343–350 ! The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301214562141 dem.sagepub.com
Kevin R Peters and Stephen Katz Background Professor John Bond is a sociologist who over the last four decades has been a foremost researcher and author in the fields of social gerontology, policy, epidemiology, public health and the sociology of medicine. He is now Emeritus Professor of Social Gerontology and Health Services Research at Newcastle University and his many books, articles, edited collections and team projects have yielded a consistently innovative and critical literature about the key issues of ageing in modern societies. In drawing together critical and qualitative sociological perspectives and the health professions, his work has been highly regarded for demonstrating the impacts of structural processes on the everyday lives and experiences of older people in care environments. His ideas on Mild Cognitive Impairment (MCI) and dementia, frequently published with the leading experts in the field, have profoundly recast how we should approach the relationship between research, practice and quality of life in the context of an ageist culture. Question: Prof. Bond, thank you for talking to us today. Can you tell us about your career background and how you became interested in mild cognitive impairment in particular? JB: I graduated in sociology and social policy from the University of Essex in 1969 and took up a research assistantship with Peter Townsend who is a well-known figure in policy and ageing studies. This is when I became curious about ageing as a social issue. Then I got a job as a Senior Research Officer for the Scottish Health Service in Edinburgh in the mid1970s, in the Information Services Division, during which time I surveyed the needs of older people. It was then that I began to understand the emerging issue of cognitive impairment. Since that time, I have been interested in the way cognitive impairment is both socially constructed and responded to by older people. I then became engaged with the Medical Research Council (MRC) Cognitive Function and Ageing Study in the UK when it was set up in 1990 and continued into the 2000s (www.cfas.ac.uk). Working with epidemiologists, I was involved in the part of a study that assessed the carers’ needs, from a range of backgrounds, since there were various professional debates at the time about caring and the boundaries between normal and abnormal cognitive ageing. Later in the 1990s I thought and wrote more about how cognitive impairment had become medicalised. My interest in MCI itself began through conversations with my colleague Ian McKeith, a clinical researcher as well as a geriatric psychiatrist, who worked on Lewy-body disease. As
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an old-age psychiatrist Ian focuses on what cognitive impairment means to older people and we both became concerned with the personal implications of the label MCI, although MCI has been known by other terms for many years. I also did work with Blossom Stephan, where we identified at least 20 different algorithms for looking at early cognitive impairment. However, MCI as a labeled disease entity developed rapidly due to the emerging research in the United States and so the need to examine it closely became important. Later, we got a grant from the Economic and Social Research Council to look at the impact of MCI for the international community, and there I worked with Tiago Moreira, Carl May, and Lynne Corner (see selected publications below). Question: As a sociologist studying ageing and cognitive health, did you feel marginal in any way when working in a largely medical and scientific gerontological community? JB: I was fortunate because when I was working in the Scottish office and here in Newcastle I have had the opportunity to talk with psychiatrists who dealt with older people, not as neurologists, but as ‘people doctors.’ They neither worried about me not being a clinician nor minded any challenges I presented as a sociologist. I never felt marginalised and as I have built close working relationships with doctors and psychiatrists, they have been on an equal basis. Question: Prof. Bond, you are known for portraying a certain critical view of MCI as a socially constructed diagnostic category. But do you think MCI is still useful or might be useful into the future as newer treatments for pre-dementia conditions become available? JB: My view is that MCI is useful to psychiatrists, neurologists and clinicians, but it is of less value to the person being diagnosed with it. Certainly local research bears out my view as one of our recent studies illustrates.1 We talked to people who had gone through the assessment process, and many of them indicated that they weren’t really sure what the assessments meant for them. The clinicians told them what the scans indicated, and usually advised them just to return for more tests in a couple of years. This arrangement does not strike me as being very valuable for the individual who comes to the clinic with a complaint or thinks something is wrong. The epidemiological research we did with Blossom Stephan’s work involved analysing longitudinal data about the transition from a MCI category and we used the MCI criteria from the Mayo Clinic as well as other criteria which we had developed earlier.2 So we were able to estimate the number of people who, after 2 years, transitioned to dementia or appeared as though they were going to develop it. The proportion was approximately 50:50; however, a ratio which corresponds with my own experience encountering people who had been diagnosed with MCI but neither transitioned to dementia nor appeared to be likely to transition in the future. What was going on there? This is the kind of conversation I have had with Ian McKeith because, again, we remain concerned about the personal and ethical implications of a MCI diagnosis if it was received and interpreted by the individual as a predictor of dementia. We can say that, yes, there is some stage in life when cognition can become abnormal and which might indicate the development of dementia, but this doesn’t mean that our current diagnostic categories and criteria for pre-dementia conditions are especially useful.
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Question: Your response leads us to the question of intervention. If dementia is a disease, then medical logic dictates that we should expect early warning signs and symptoms. As with other serious diseases, early intervention is assumed to be beneficial and preventative, thus various drugs and biomarker tests are used as forms of intervention. What is your view of such early signs, symptoms and interventions for AD? Are they helpful or are they part of a trend towards medicalising cognitive decline at older ages? JB: My understanding of dementia is that it is not just one disease, but rather a number of diseases interacting in various ways. However, for biological and biomedical researchers, their work is to categorise clinical conditions in a way that makes them amenable to interventions. My colleague in Newcastle, Elaine Perry, first identified the cholinergic hypothesis at the same time as Peter Whitehouse did, within a framework of benefit and philosophically I have no issue with pursuing an intervention that promises to be beneficial and preventative. The disease model, which uses vaccination, for example, is very straightforward. If there was an effective vaccination for one or more of the various dementias there would be no argument about benefit, just as there is no argument about vaccinations for measles or tuberculosis from a health perspective. However, at the moment this kind of treatment or intervention does not appear on the horizon for dementia. In the end, the cholinergic hypothesis of AD has not shown much practical benefit. When we were doing our research on international perspectives on MCI, it happened at the time when Ronald Petersen published a paper on donepezil and Vitamin E that showed no improvement in MCI.3 We attended two conferences and at the second one where Dr Petersen was presenting his paper, suddenly Pfizer disappeared off the screen, while its representatives had flooded the first conference promoting various forms of donepezil. So we have the question of the driver behind research hypotheses and here is where I worry about the impact of the commercial interests of the pharmaceutical companies on the clinical interests of patients. In addition to being aware of the commercial drivers, we also need to critically investigate the research findings themselves that situate MCI as an indicator of further dementia. At this time, we do not have the measurement tools for MCI or dementia that would confirm their universal connection in consistently valid ways. Question: Regarding your comments about the problems of diagnostic and testing inconsistency for patients, some of the leading MCI researchers claim that too many clinicians use MCI diagnostic criteria after the fact rather than prospectively, which they view as a cause of the high instability of MCI that you have criticised. What do you think of this kind of commentary? JB: My first response is that our research is community based, yet much of the defensive MCI commentary is clinically based. Second, the question here is whether or not it is worth screening people with MCI or cognitive impairment in order to be able to intervene. And it is here in the actual practical contexts that we have this mismatch of labels. The pharmaceutical companies are also looking for widespread, community application; if donepezil had been shown to have an impact it would have been the biggest market for Pfizer for decades because of the enormous size of both the problem it addresses and the subject population. We also have to keep in mind that the top researchers, whose work is mainly clinically based and removed from the community in contrast to front-line and
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general practitioners, have the latest multiple testing technologies, teams of support workers and researchers, and large funding resources. Question: In relation to the community and the clinic, you have written about the neglect of people’s own experiences and perspectives in the research literature. What, now, do you think are the best ways to bring people’s own voices and experiences into the research world, especially around cognitive health and ageing? JB: I am ambivalent about this research issue because, as a human being and a sociologist, of course, I have included older people’s voices and wish to continue doing so. However, one of the problems is that when older people are engaged, as consumers or as patients, we do take the risk that providing more information to them can increase their anxiety and reduce overall benefits. Certainly on ethical grounds people should be involved and consulted, but I can also sympathise with traditional medical paternalism that relieved patients of all the possible bad news. In the research with which I’ve been involved, people with cognitive impairment or their carers were engaged in the process as much as possible. As you are aware, in qualitative research, the researchers set the questions and sometimes these are not what the research participants want to hear or address. Focus groups with the public can reveal that they have different kinds of concerns; for example, in a recent study the people really wanted to know whether or not they have MCI or dementia and if so, what will their lives be like into the future. These are not question clinicians can honestly answer, since they can only talk in terms of general instances. My point is that if people want answers to these kinds of unanswerable questions, then researchers should consider this issue before engaging them in interactive contexts. No one really likes tests or waiting long for test results, especially if the medical response is that nothing can be done except to return for more tests later. And, as we know, our cognitive tests are set up so that everybody at some point fails them to a certain degree, although they are certainly more pleasant than lumbar punctures. Question: Given your work and experience in public health, what do you think of current health promotion images and campaigns around cognitive health? Is there a new lifestyle that has added the care of the mind to the care of the body as part of successful ageing? JB: I am aware of the positive benefits and lasting value, as demonstrated epidemiologically, of certain lifestyle behaviours, especially exercise. The intentional public health messages with advice to do more exercise, along with eating sensibly, not smoking and drinking moderately, are the kind I would want more people to see. The problem is the commercialisation of such messages in terms lifestyle products, fad diets, and expensive but not necessarily beneficial recreational activities. I suspect that such commercialisation will undoubtedly alight on cognitive health because as we age, cognitive crises will become a central anxiety into the future. We also have to differentiate between the actual usefulness of cognitive testing and the realistic impacts of physical exercise, diet, and environment on cognitive health. Question: If exercise and diet advice is commonsensical, then perhaps we do not need frightening medical labels to convince us to change our behaviour. However, research such as The Risk Evaluation and Education for Alzheimer’s disease (REVEAL) Study,4 where people were informed of their ApoE E4 status, demonstrated that such individuals did not
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make any significant changes to their diet or exercise based on their elevated risk for AD. They did, however, consume more dietary supplements (e.g. gingko biloba, vitamin B, etc.) even though there is no evidence that such supplements are helpful in reducing the risk for AD. JB: That’s an interesting dilemma and you’ll find it is probably the same situation if you look at heart disease or other genetically identifiable risk factor groups, which is that people do not respond to the risk factor information in predictable, rational ways. Really the issue around exercise and diet has little or nothing to do with personal motivation; even though this is what we are told because it creates the appearance that we can control our conditions of life. However, we also know that the uncontrollable factors of social housing conditions, the commercialisation and adulteration of food products, accessibility to safe environments, air and water quality, etc., are enormous determinants of health. The latest one from our government in the UK is that people should avoid drinking sweetened drinks every day because it increases the risk of diabetes tenfold. But our very same society supports the production, promotion and widespread consumption of such drinks, even for children, on a daily basis. We need social and global change to make a difference; otherwise, the focus on individualising and personalising health risks is self-defeating. Question: This was certainly the case with smoking in North America; it took governmental laws against smoking along with consumer tax hikes and age restrictions, to reduce tobacco use. JB: And that has worked in Europe too, where smoking in public places is banned as is selling tobacco to minors. Question: There are also concerns here in North America about the growing expenses of maintaining cognitive as well as physical health amongst ageing populations. Is this an issue in the UK as well? JB: If we are living longer and face greater prospects of cognitive dysfunction, and if nursing care is what the majority of people with dementia receive, then yes, it is expensive and will become more so. However, the popular imagery neglects the fact that increasing health care costs are actually outside of the cognitive field and more to do to with technologies that predict or prevent heart disease and things of that nature. But the Alzheimer’s Society in the UK and America has been using the fear scenario in order to generate research income. Their argument is that if diseases such as breast cancer can be prevented and managed when adequate funding is devoted to them, then we can do the same with dementia. The difference with dementia is the ageing factor, as the epidemiologists suggest, that if we live long enough we are going to experience various forms of cognitive impairment that will be expensive to manage. Question: A recommendation that is appearing more frequently is that front-line physicians and general practitioners should be better trained to identify cognitive problems before they become expensive in terms of care. Would you agree with this recommendation? JB: The epidemiology suggests otherwise, that once you have a decline, whatever the decline is and if you don’t die from something else, then you will end up in a very
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expensive care situation for dementia. However, it may be that the front-line physicians need to be better trained for identifying cognitive problems, not necessarily to save expenses but to make management for individual patients more sensible and suitable for them. Physicians, especially if they know the patients and their families, can help with explaining problems and preparing for late-life decisions. They can also reassure families and carers on how to deal with declining conditions, while remaining focused on the person at the centre of it. Question: Prof. Bond, would you say there is anything particularly innovative in the UK today which you would consider as leading the way into the future for ageing, MCI and/or dementia? JB: I don’t think so anymore. I would have said that 20 years ago the role of old age psychiatrists was innovative because they looked at the whole person and not just the dementia. They also encountered dementia in the context of other diseases and conditions within people’s social networks. Now, unfortunately, this part of psychiatry is becoming more medicalised and influenced by neurologists, who have increasing interests in brain scans and other physical biomarkers, which moves psychiatry away from holistic models, although I still have some great colleagues who continue to work in those models. As you are aware, the British advocate Tom Kitwood and his promotion of ‘person-centred’ in the Alzheimer’s field was quite a challenge to the pharmaceutical companies. His ideas have actually remained very current some 20 years later as the idea of person-centred care has informed national policy and remains part of the national dementia strategy. However and despite its innovation and popularity, I do not see person-centred care practices widely established here in clinical settings. While good nursing homes embrace person-centered care by respecting the autonomy and privacy of their residences, 95% of the homes also lack the time and the budgets to carry out such care fully. Also, the ratio of patients to caregivers is growing, which also affects person-centred care. As I read the international literature and talk to people from across the world, it seems that we are coming up with similar ideas in relation to the challenges presented by healthcare systems. So in that sense we are still innovators. In the UK, there is socialised medical coverage and patients do not have to worry about affording access to care, while this is not the case in some European countries and certainly not in the United States. So innovation in this sense is also about matching good social supports to evolving health problems. Question: Being a qualitative sociologist, you come across the consequences of the divide between home-care and residential care. In our country, Canada, people are encouraged to stay in their homes for as long as possible for emotional and cost-saving reasons. Yet, cognitive impairment can create risks for people staying at home in terms of safety especially. What do you think of this ‘stay-at-home’ and ‘ageing-in-place’ emphasis for cognitive impaired individuals? JB: The issue of safety is very important and in the last few years in the UK we have implemented The Mental Capacity Act (2005), where people have the right to decide to stay in their homes, but they are not advised to do so if there are ‘safety’ issues. But what are the safety issues? If a safety issue is about somebody living in a place where they are likely to create a fire, then how does one calculate this probability of risk? And what kinds of environments are more at risk for being unsafe than others? And how is age calculated
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into safety risks? I think there is often too much risk assessment built into the health professional’s behavior because they have to cover their backs too. If a person has an accident or dies at home, when it could have been prevented or not happened at all in an institution, then who is to blame? So the ageing-in-place policy comes with a certain clinical surveillance and risk-insurance model. When I talk to my economist colleagues, they tell me that if costing is done properly, that is the whole package of housing, property, and in-house care costs is included, then community care does not necessarily save money. So I am not sure that the desire to stay at home is due to financial exigency or just the desire to stay at home for emotional reasons. Question: There is also the assumption that family members will be carers. JB: This is true. We do assume that family members, especially women, along with other close friends and community members become sort of natural carers. Today there are also grandparents who look after children much more than they would have in the past. But domestic life is also a domain that can be very innovative, especially where families do not like to see their older relatives or friends suffer. All manner of public/private boundary issues become introduced here that have significant implications for health across the life course. Question: You mentioned that you are retiring now, or semi-retired. What are your plans for the future? JB: I work on a part-time basis writing, mentoring and supporting other people, working with some PhD students completing their programmes, and finishing any research projects. Although, as you know, you can continue tying up loose ends of research projects for years. Otherwise, future plans are to reinvent myself as something else and doing things which I’ve been dabbling with all my working life but haven’t had time to do properly until now. Of course, none of this will stop my curiosity in reading and thinking about the critical issues of our time. Question: Prof. Bond, we certainly appreciate all the work you have done in bringing together a critical inquiry of ageing across political, sociological, medical and gerontological fields. Your kind of critical gerontology, the kind that questions itself, has made a real difference to how we view ageing populations. Thank you so much for all your work and this valuable conversation. Enjoy your retirement. JB: Thank you and good luck with your project.
Notes 1. Samsi, K., Abley, C., Campbell, S., Keady, J., Manthorpe, J., Robinson, L., Watts, S., & Bond, J. (2014). Negotiating a labyrinth: Experiences of assessment and diagnostic journey in cognitive Impairment and dementia. International Journal of Geriatric Psychiatry, 29(1): 58–67. 2. Stephan, B. C. M., Brayne, C., McKeith, I. G., Bond, J., & Matthews, F. E. (2013). Mild cognitive impairment in the older population: Who is missed and why does it matter? International Journal of Geriatric Psychiatry, 23(8): 863–871.
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3. Petersen, R. C., Thomas R. G., Grundman, M., Bennett, D., Doody, R., Ferris, S, . . . Thal L. J. (2005). Vitamin E and donepezil for the treatment of mild cognitive impairment. New England Journal of Medicine, 352, 2379–2388. 4. Vernarelli, J. A., Roberts, J. S., Hiraki, S., Chen, C. A., Cupples, L. A., & Green, R. C. (2010). Effect of Alzheimer disease genetic risk disclosure on dietary supplement use. The American Journal of Clinical Nutrition, 91(5), 1402–1407.
Selected Publications Abley, C., Bond, J., & Robinson, L. (2011). Improving interprofessional practice for vulnerable older people: Gaining a better understanding of vulnerability. Journal of Interprofessional Care, 25(5), 359–365. Bond, J., Peace, S., Dittmann-Kohli, F., & Westerhof, G. (2007). Ageing in society: European perspectives on gerontology. London, UK: Sage Publications. Bond, J., & Corner, L. (2006). The future of well-being: quality of life of older people in the twenty-first century. In J. A. Vincent, C. Phillipson, & M. Downs (Eds.), The futures of old age (pp. 161–167). London, UK: Sage Publications. Bond, J., Stave, C., Sganga, A., Vincenzino, O., O’Connell, B., & Stanley, R. L. (2005). Inequalities in dementia care across Europe: Key findings of the Facing Dementia Survey. The International Journal of Clinical Practice, 59(s146), 8–14. Bond, J., Corner, L., Lilley, A., & Ellwood, C. (2002). Medicalisation of insight and caregivers’ response to risk in dementia. Dementia, 1(3), 313–328. Manthorpe, J., Samsi, K., Campbell, S., Abley, C., Keady, J., Bond, J., . . . Iliffe, S. (2011). The transition from cognitive impairment to dementia: Older people’s experiences. London, UK: National Health Service. Moreira, T., & Bond, J. (2008). Does the prevention of brain ageing constitute anti-ageing medicine? Outline of a new space of representation for Alzheimer’s Disease. Journal of Aging Studies, 22(4), 356–365. Moreira, T., May, C., & Bond, J. (2009). Regulatory objectivity in action: Mild cognitive impairment and the collective production of uncertainty. Social Studies of Science, 39(5), 665–690.
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