Preventing Dementia? Critical Perspectives on a New Paradigm of Preparing for Old Age

Edited by Annette Leibing and Silke Schicktanz

Berghahn Books, 2020. 268 pages

In their recently published edited volume, medical anthropologist Annette Leibing and bioethicist and STS scholar Silke Schicktanz set their focus on the “new dementia” and on related and novel approaches to dementia prevention. While the “old dementia” might have been underscored by a brain-centered understanding and a neuroreductionist preoccupation with plaques and tangles, the definition of a “new dementia” represents an attempt to emphasize the important epistemological change that recently took place – dementia as preventable. However, prevention, as the two editors argue, might not be the right term. With “the new dementia” the disease is conceptualized as involving the whole body and social lives, and can be conceived as a real opportunity to reduce the risk of dementia – although not for all. Dementia prevention is therefore a multicausal process that covers the whole life course, which can be seen as an opportunity, but also as a burden.

As we learn throughout the book, in recent decades, and despite several epistemological and ethical uncertainties, the discourse around dementia prevention has expanded significantly to include various fields, becoming increasingly socially orchestrated, but equally moralizing in the process. As such, the approach to prevention today bears little resemblance to its past equivalent, when prevention involved little more than vaguely-defined brain-training activities (p.1.). The most representative example of this new “preventive logic” (p.9) can be found in a highly-mediatized Lancet report from 2017, which is mentioned by several authors in the volume. According to this study, one out of three dementia cases could be avoided if nine risk factors – many of them lifestyle-related – were better managed (a 2020 Lancet report increased this list to 12 risk factors). While Leibing and Schicktanz do not set out to evaluate the accuracy of this somewhat controversial assertion, they use the Lancet reports to suggest that the new prevention paradigm has both discursive limits and promising potential.

These two aspects of the new dementia prevention paradigm are productively explored by the authors in this volume. The book’s core message seems to be that social scientific, public health and ethical considerations of dementia prevention rest on several problematic assumptions and “argumentative shortcuts” and that planning for aging over the life course requires our urgent attention as well as a careful search for more nuanced alternatives. Indeed, in each chapter of the volume – most of which are by well-established scholars of medical ethics, anthropology, sociology, philosophy of science, STS, psychology, and history of science – the author thoughtfully urges us to engage critically with such engrained concepts as neoliberalism, lifestyle, prevention, and self-responsibility. Consequently, each contribution in the volume offers new angles on long-standing arguments. For example, the authors ask how the emergence of a “preventive logic” has changed our understanding of aging, the life course and dementia itself. What new can we learn about the neoliberal state, social welfare and the assigning of responsibility in the context of dementia prevention? How did the current prevention discourse come to dominate, despite its underlying scientific and ethical uncertainties? Why did the discourse on dementia prevention enter at such a late stage into scientific and public debate, given that the prevention discourses of, e.g., diabetes and cancer emerged decades earlier? Finally, and this is a question the book answers in a particularly intriguing way, what (new) concepts, methodologies and empirical data do we need to expand our understanding of what is new and what is “not so new” about dementia prevention, especially in its localized versions? In what follows, I present the authors’ attempts to answer some of these questions, and discuss the relevance and value of these arguments to and for various categories of readers.

The book is composed of three sections: the first situates discourses and practices related to dementia prevention in various geographical and historical contexts. The second section focuses specifically on early detection, and the ever-changing scientific and ethical underpinnings of Mild Cognitive Impairment (MCI) as contested diagnostic category. The third section looks at the central theme of the book, that of prevention itself, suggesting that the historical and current connection of prevention with lifestyle, responsibility and chronicity is much less straightforward than is usually assumed in public and scientific debates.

The first section starts with an intriguing historical account by historian of medicine Lara Keuck. Although several accounts exist already about the past of Alzheimer’s disease, Keuck provides a highly original twist to existing scholarship; she describes different “windows to act” – different opportunities to intervene in the pathology over time. Leibing, in the following chapter, argues that the new dementia and prevention paradigm emerged because of three epistemic changes that had taken place in dementia research in the recent past (Chapter 2). Leibing briefly highlights the importance of two of these changes: the re-imagining of dementia as a disease related not only to cognition, but also to behavior and psychological symptoms (with BPSD – “behavioral and psychological symptoms of dementia” – as a central signifier of this shift); as well as an increased research focus on early detection, with MCI and biomarkers now considered as the core categories through which the risk of dementia is evaluated, sometimes even diagnosed. Leibing then focuses on the third and rarely discussed epistemic change, namely the merging of the categories of vascular dementia and Alzheimer’s. She argues that this conceptual fusion was made possible after it became clear that both categories have an important cardiovascular origin, and thus also Alzheimer’s disease became more preventable through appropriate behavior and pharmacological interventions. Finally, drawing on her ethnographic data from Brazil, Leibing notes that the preventive turn connected to modifiable risk factors is deeply social (most risk factors are linked to well-functioning health- and social systems) – a turn that could change prevention, but that has also led to social blame, especially of socially-disadvantaged groups who can now be accused of not taking enough care, for instance, of their high cholesterol levels. These developments lead Leibing to suggest that dementia should be perceived as an undemocratic disease, i.e., one where the risk is not universal but rather correlated with social inequalities. Above all, Leibing’s ethnographic findings demonstrate the value of analyzing dementia prevention as a localized phenomenon. While situated analysis has always been at the core of any anthropological work, the idea of situating prevention, and not only senility and care, in the local context is new to anthropological writing on old age. This suggestion will surely also be valuable for broader social research on aging and the life course.

Readers familiar with Leibing’s writings on the vascularization of Alzheimer’s may appreciate a parallel argument, in Chapter 5, concerning the geriatricization of dementia prevention. Alessandro Blassime enlarges Leibing’s concept of a ‘cardiovascular logic’ (see Leibing and Kampf 2013) and argues that this is part of a wider process of epistemic convergence between dementia and geriatric research. Both fields, he argues, have gradually become underscored by the same assumption of continuity between the disease and normality. According to Blassime, central in sustaining this continuity has been the concept of frailty, which operationalizes decline and health on the same continuum; an example are scales used to assess the level of frailty. Blassime proposes a new concept of “ground-state-prevention” to account for the idea that deterioration (and its prevention) is a process that happens throughout the life course and not only at the final stages.

The importance of situated analysis is also borne out by Silke Schicktanz in Chapter 3, where she examines the dementia prevention discourse in the German context. Schicktanz demonstrates that while the perspective of scientific experts is important, it is only part of the story. Her analysis of dementia prevention in different social fields in Germany – the discourse found in activist groups; and among professional and popular scientific stakeholders – reveals that different social actors produce vastly diverse understandings of prevention and of the state’s and the individual’s role within it. Therefore, Schicktanz suggests thinking beyond oft-repeated slogans about the withdrawal of the neoliberal state. Instead, she proposes that more attention should be given to how, in the neoliberal context, prevention responsibilities are divided between various actors, including the individual, the state and various professional fields. Having acknowledged the plurality of actors and visions in prevention politics, Schicktanz then moves to argue that, in the light of the understandings of a “new dementia”, the debate on ethics of prevention should be significantly re-framed. The ethics of prevention should no longer be only about whether or when to promote the disclosure of the diagnosis or pre-clinical detection techniques. Rather, the ethical questions should concern the definition and distribution of individual, professional, social and state responsibility and how to reconcile these with “moral and scientific uncertainties” underlying the new prevention discourse.

Matthias Leanza makes a corresponding argument in Chapter 4, where he engages with the critique of neoliberalism often found among social scientists (as, for example, critical gerontologists), noting that in the Swiss and German contexts the automatic association of neoliberalism with institutionalized individual self-responsibility is problematic. Firstly, the active presence of state-funded health-monitoring research bodies in Germany and Switzerland as well as legislative epidemic controls in these countries suggests that at least some neoliberal states continue their involvement in public health management. Secondly, as Leanza argues, the promotion of self-responsibility does not necessarily mean the state’s withdrawal. To borrow his own very apt phrases: “shifting responsibilities” is not a “zero-sum game” (101), and “it takes a collective effort to create a self-responsible subject (p.101). In his “critique of the critique” of neoliberal public health, Leanza proposes that our examination of dementia prevention should be more attentive to the (still) very collective and contingent nature of the neoliberal governance of health. Critically engaging with Luhmann’s risk and communication work and Latour’s work on sociology of associations, Leanza proposes a set of questions: who defines what is normal and what is political and on what grounds? How are tasks and responsibilities distributed between various actors, ranging from individuals to state authorities? Finally, where should the limit of prevention logics in the individual’s life be drawn? 

While I find Leanza’s thinking beyond the thesis of neoliberal governmentality extremely important and eye-opening, I nevertheless believe that this proposal would have been even more compelling had it not thrown out with the bathwater a significant portion of the learnings gleaned from the attention paid elsewhere to structural inequalities. Returning questions of structure to the center of the picture (perhaps indeed in a different form than proposed by governmentality literature) could help in avoiding problematic statements such as those made in Leanza’s conclusion; e.g., that (prevention) success remains dependent on individual value commitments and “that there is no real solution to this problem”. Despite what is, in my view, a shortcoming in this regard, Leanza’s model offers some helpful ideas on how to critically explore neoliberal health and the life course.

In Chapter 6, Tiago Moreira discusses the transformation that the concept of MCI has undergone over the last two decades. As Moreira observes, while at the start of the new millennium MCI was the core predictor for Alzheimer’s disease, by 2018 it had become only loosely associated with dementia risk, and its predictive power significantly truncated. Moreira links this shift to two changes in the last 20 years. The first is the disconnection between research and clinical practice: while labs have become increasingly focused on “innovative” biomarkers, clinics have continued working with the “old” diagnostic categories (e.g. MCI). The second change that Moreira identifies is the marketization of healthcare systems, a result of which is that memory clinics are often under pressure to respond to patients’ demands and preoccupations related to memory loss. In effect and paradoxically, as Moreira suggests, the scientific importance of MCI stems not from its technological promise (now cast into doubt) but from patients’ need to “put a name” on their troubles (139). In Chapter 7, Stephen Katz, Kevin Peters and Perry Ballantyne, seem to make the opposite argument: for them, MCI is of growing concern, which might arguably be based on the fact that Moreira is a UK researcher, while Katz et al. argue from a North American – Canadian – perspective.

In the third section, we are again invited to think about the neoliberal aspects of prevention, especially in its connections to lifestyle, responsibility, and chronicity. For example, Kristen Bell (Chapter 8) concentrates on the central position that lifestyle currently occupies in prevention discourse. A common thesis is that the lifestyle argument is used by the neoliberal state to shift responsibility for health to the individual. In turn, Bell’s analysis demonstrates that for lifestyle to become considered key for disease incidence and prevention, some other epistemic changes must have earlier taken place. Moreover, comparing dementia to, e.g., diabetes and cancer prevention, Bell shows that different diseases have been “incorporated into the lifestyle frame” at different times in history and for reasons more contingent than the aforementioned “neoliberalism-lifestyle” shorthand might suggest. Tracing historical developments between 1949 and the 1970s in the US, Bell shows how lifestyle came to be considered as central in prevention programs only after chronicity and lifestyle risk factors had become large-scale social and political concerns for public health in the US.  While the uncertainties related to the pathology behind dementia may have made it difficult to consider dementia as preventable, Bell seems to agree with Leibing that it is perhaps the aforementioned vascularization of this disease that ultimately transformed the understanding of dementia into one of a preventable condition, partly as the result of poor lifestyle choices.  

In the same final section, Schweda and Pfaller (Chapter 9) challenge current critiques of the responsibilization of aging (“assigning responsibilities is not, per se, problematic”, 93), and argue that more analytical attention should be given to the ethical frameworks underscoring the concept of responsibility. Drawing on the model developed by Schicktanz and Schweda (Schicktanz and Schweda 2012), the authors posit that “an ethical analysis of responsibility claims” should examine – in the local context – “the relationship between different actors and their tasks and capacities, the instance and its power and the underlying moral standards and their validity and binding character”. 

Finally, Thomas Foth’s chapter (chapter 10) can be read in dialogue with Leanza’s text in the first section. Foth provides a genealogy of lifestyle as a central element of prevention – an idea that is curiously based on a Canadian report on health care from 1974 (the Lalonde Report). Unlike Leanza, Foth writes in a Foucauldian tradition, in which neoliberalism has become a central point of critique. This kind of critique could be more nuanced and grounded in concrete examples, but all in all, this chapter is another example of the fact that each chapter of the book provides a new aspect, concept or perspective that cannot be found in the existing dementia literature.

Because of its innovative approach and timeliness, the book will not only be of interest to social, ethical and public health researchers working on dementia (at all career stages) but will also be a contribution to wider debates about neoliberalism, risk, governmentality and social capital. Some of the chapters are of direct and urgent relevance to policymakers, although the book’s length is likely to be ill-suited for the policy-making context. Methodologically, the book engages with the topic of dementia through a wide range of methods: ethnographic fieldwork, semi-structured interviews, genealogical research and Critical Discourse Analysis of media and academic texts. The text is strongly weighted towards social theory rather than ethnographic vignettes, which may leave some readers missing a more micro-level perspective. However, by proposing such a rich set of new concepts and approaches, Leibing and Schicktanz’s book has opened a debate which is likely to be informed by more ethnographic research in the future.

Overall, the text is plotted using both sociological and biomedical concepts, but it is nevertheless a very accessible read, enriched by a few spot-on metaphors that together provide a fitting summary of some of the book’s central concerns. For example, Keuck (Chapter 1) labels Alzheimer’s “a working title”, pointing at the constantly shifting and always tentative nature of this nosological category. Leibing beautifully summarizes her “vascularization of Alzheimer’s” argument by writing about “brain becoming body”. Finally, Schicktanz’s excellent chapter title, which might well become representative of the whole volume, asks: “If dementia prevention is the answer, what was the question?”

---

Barbara Pieta is a PhD candidate at Max Planck Institute for Social Anthropology and a co-convenor of the EASA’s Age and Generations Network (AGENET) In her doctoral dissertation, based on ethnographic fieldwork in Northeast Italy, she explores the tension between autonomy and care, as well as its connection to changing configurations of local kinship networks and national strategies of dementia prevention. Her interest also includes ethics of dementia research and visual methods in research involving individuals living with dementia. She has coordinated the first edition of Ageing and Visual Anthropology Award (AVA).

---

Works Cited

Leibing, Annette and Antje Kampf – Neither body nor brain: Comparing attitudes to prostate cancer and Alzheimer’s disease. Body & Society 19(4): 61-91, 2013

Schicktanz, Silke and Mark Schweda – The Diversity of Responsibility: The Value of Explication and Pluralization. Medicine Studies 3(3):131-145.