The Diseased Brain and the Failing Mind

Front matter

EXPLORATIONS IN SCIENCE AND LITERATURE

The Diseased Brain and the Failing Mind

Dementia in Science, Medicine and Literature of the Long Twentieth Century

Part I The organic paradigm 21 Ihe Forsyte Saga: The cultural image of dementia in the

fin-de-siécle family novel 23 Dementia and memory loss in science, medicine and literature

before 1880 29 Auguste D. and Johann F.: Alzheimer’s clinical cases and

histological research 34 Degeneration: The old and new narrative of loss and decline in

medico-scientific literature on dementia and Alzheimer’s disease 41

There Were No Windows: The patient’s illness experience in the modernist novel 45

Part II The ageing perspective 53 3 Culture shapes politics shapes science 55 Researching old age: From medical science to old-age psychiatry 55

At The Jerusalem: Dementia defines the elderly in 1960s new realist fiction 60 viii Contents

4 The loss of self in healthcare and cultural discourse Caregiver guides: Helpers in the face of loss and decline Out of Mind: The postmodern novel delves into the mind of the patient

Part III The cognitive picture

5 The narrative of loss in a growing biomedical and literary marketplace of Alzheimer’s disease Neurodegeneration: The biochemical narrative of lost molecules, pathways and communication On genes and genealogy: The patient as specimen, carrier and type in research and popular science Death in Slow Motion: Past identities, lost plots and old age in caregiver life-writing

6 Neurotechnologies and narrative examine the failing mind The visual exploration of the brain and fascination with the mind The Dying of the Light: Detective fiction claims back patient authority Who Will I Be When I Die? Patient life-writing around the year 2000

Part IV The whole-person prospects Immunization hope and hype: The patient as non-responder

La guardiana di Ulisse: The patient beyond forgetting in children’s literature and adult fiction of the new century

Alzheimer mon amour: Healthcare changes and patient personality in contemporary caregiver memoirs

We Are Not Ourselves: The cultural image of Alzheimer’s disease in the twenty-first-century bildungsroman

8 Conclusion

Glossary Notes Bibliography Index

67 67

109 109

133 135

169 177 223 257

Acknowledgements

This book, like my own training, crosses several disciplines. It immeasurably benefitted from my exchanges with literary and film scholars, scholars of ageing and the health humanities, cultural historians and historians of science as well as colleagues working in medicine and pharmaceutical sciences, within and beyond King’s College London. I am particularly grateful to Brian Hurwitz and James Whitehead. A practicing clinician in his first life, who enacts narrative medicine in each and every conversation, Brians critical evaluation and analytical observations have opened my eyes to the challenges of discipline-crossing articulation and argument. James Whitehead rose to the challenge of initiating a non-native speaker to the infinite thesaurus of literary scholarship. His perspective has significantly influenced how my ‘neuromolecular style of thought’ shifted towards more literary reasoning.

I am also indebted to Neil Vickers and Jonathan Day for inspirational conversations about my research. Their comments were instrumental in giving the project a firmer grounding in Ian Hacking’s outlook on the role of science in discourse developments, and in deepening the study’s focus on how literary trends have contributed to shaping current thinking about dementia.

My research also benefited from engaging with Helen Small and Sander L. Gilman. Helen’s philosophy-centred perspective on ageing in literature and culture pushed me more fully to consider the impact on the patient’s unrecoverable self of a century-long discourse of dispossession, decline and loss. Sander’s reflections on the cultural politics of neurodiversity added further dimensions to my analysis of literary writings. Through conversation with them both, I considered in more detail the challenges faced in the medical clinic of having to engage with patients and caregivers while having precious little to offer in terms of remedial intervention.

I greatly appreciated the support of Richard Kirkland, Josephine McDonagh, Mark Turner and Jane Elliott throughout my time at the English Department of King’s. Thanks are also due to Ludmilla Jordanova and Katherine Foxall for helpful comments on the original Wellcome Trust grant application (099351/Z/12/Z); their observations helped to frame this project more clearly as x Acknowledgements a historically situated literary study. I am grateful to Susan Greenfield for having endorsed this application, and I thank Julia Howse for administrative support during the application process and Sabrina Beck for helping with organizational tasks during this research period. Members of staff at the British Library, the Radcliffe Science Library and the Wellcome Library have been enormously supportive throughout.

This project has also benefitted from my conversations with many national and international scholars, too numerous to mention individually, at health humanities and literature and science meetings as well as workshops and round tables concerned with ageing, dementia and literary writing more broadly - including the conference A Narrative Future for Health Care (London, June 2013), a workshop on Medical Case Histories as Genre (London, July 2013), the first Narrative Medicine Summer Meeting (Berlin, August 2013), a Medical Humanities Colloquium at UNC (Chapel Hill, September 2013), a round table about Science and Storytelling at the University of Reading (November 2013), a workshop on The Writer’s Diary (London, April 2014), the Boundaries of Illness meeting (London, June/July 2014), two CHCI Health and Medical Humanities meetings (Dartmouth College, NH, July 2015; King’s College London, June 2016), the twelfth annual conference of the British Society for Literature and Science (Bristol, April 2017), the first Dementia and Cultural Narrative Symposium at Aston University (December 2017), a symposium on Living a Good Life in Older Age at the University of Warwick (July 2018), a workshop on Dementia, Violence, and the Politics of Memory at Freie Universität Berlin (September 2018), a workshop on Working Together beyond the Academy in Research in Dementia and Culture (London, November 2018) and a Centre for the Humanities and Health seminar at King’s College London (January 2019).

Several scholars directed me to specific texts or helped me explore research materials in particular ways. First and foremost, I feel deeply indebted to Sally Shuttleworth for pointing me to Timothy Forsyte’s ‘losing his mind. With Victoria Coulson, I had a wonderfully inspirational discussion about ‘wicked’ scientists; with Tania Gergel, I deliberated on ageing in Ancient Greece and Rome; Eileen Gillooly mentioned Barbara Pym’s Marcia Ivory to me; to John Holmes, I owe my attention to the influence on discourse developments of film; Keisuke Maruyoshi answered my questions regarding Japanese culture and language in relation to two dementia narratives; with Gordon McMullan, I discussed late-life creativity and redemptive turns in caregiver accounts; with Ulrich Metzner, I had an enthusiastic exchange about the correlation

Acknowledgements xi between character traits of musicians and the role of their instruments within a string quartet; I thank Giancarlo Pepeu for his prompt assistance in obtaining original language material; Ruth Richardson pointed me to an early literary dementia narrative centred on the condition’s early-onset form; discussions with Max Saunders and Julia Watson added nuances to my readings of life-writing; and a conversation with Claudia Stein, long before the inception of this project, inspired my focus on imaging methodologies. I owe thanks to David Avital and Ben Doyle at Bloomsbury, to the anonymous reader for a perceptive and thoughtful reflection on this discipline-crossing research and to the series editors for their careful reading, considered observations and generous support. Finally, conversations with Jochen Klein continue to inspire me in my discipline-crossing undertakings, and Iam immensely grateful for his observations on my work.

Throughout this research activity, I audited several MA modules at the English Department of King’s, which shaped how I approached my research material. I am grateful to Ian Henderson for welcoming me into his 2013/2014 seminar series on ‘Victorian Sensations, and to Madeleine Wood for her stimulating discussion of Wilkie Collins’s work. I also wish to thank Brian Glasser and Michael Clark for encouraging my participation in their 2014/2015 seminar series ‘Medicine on Screen, which introduced me, among others, to identity-affirming documentaries like those by Nicolas Philibert. I also had the great fortune of following Neil Vickers’s 2015/2016 module on ‘Biopower: The Fate of an Idea. The course readings and seminar discussions have influenced my perspective on Alzheimer’s disease as a case study of how the power pertaining to disciplinary and institutional knowledge shapes the wider societal and cultural thinking about illness.

It is several years now that I have had the privilege of teaching illness narratives in a pharmaceutical sciences as well as a health humanities context. I feel especially indebted to all undergraduate students who entered into exploring a field outside textbook physiology and pharmacology, both at the Faculty of Biochemistry, Chemistry and Pharmacy at Goethe University Frankfurt and at the School of Biomedical Sciences at King’s. Teaching at graduate level in the English Department at King’s and discussing my research in a series of postgraduate seminars in Frankfurt especially enriched my reading of current life-writing. The continued interest in my research endeavours by science colleagues, especially Jochen Klein, Michael Karas and Paul Layer, is further encouragement to persevere at the boundary between science, medicine and literature.

xii Acknowledgements

Finally, I wish to thank Peter and Elizabeth Howarth for having hosted me on so many occasions, and all those who have provided support and encouragement (while mercilessly lengthening my list of research materials with TV recordings, newspaper clippings and the yet latest bestseller).

The Wellcome Trust generously enabled this research and its open access publication.

Series Preface

In spite of the myth of the “Two Cultures; science and literature have always been shaped by one another. Many of our most powerful scientific concepts, from natural selection to artificial intelligence, from germ theory to chaos theory, have been formed through the careful - and sometimes careless - use of written language. Poets, novelists, playwrights and journalists have taken up scientific ideas, medical research and new technologies, exploring them, reworking them, at times distorting or misjudging them, but always shaping profoundly the wider culture’s understanding of what they mean. This intimate and productive relationship between literature and science generated a steady stream of insightful scholarship and commentary throughout the twentieth century and has grown into a substantial field of study in its own right since the turn of the millennium. Where the idea of “Two Cultures’ does still have a hold, however, is in academic disciplines themselves. In schools and universities, we study science and arts subjects in different classrooms, taught by different people with different expectations. Literature and science studies has, so far, been largely a sub-discipline of literature, with only rare contributions from or addressed to scientific experts. In a world of ever-increasing specialization, failure to communicate across these disciplinary divides risks failing to appreciate the contribution that the study of literature can make to our understanding of science, medicine and technology, the uses that science makes of images, narratives and fictions, and the insights that scientists can bring to bear on literature and on culture at large.

Explorations in Science and Literature aims to speak across this divide. It has a particular mandate to bring the insights of literary study to bear on science itself; to consider the significance of literature from a scientific point of view; and to explore the role of literature within the history of science. The books therefore examine the complex interrelations between science and literature in cross-disciplinary ways. They are written equally for scholars and students of literature and for scientists and science students, but also for historians and sociologists of science, as well as general readers interested in science and its place in culture and society. By showing how each field can be enhanced by a knowledge of the others, we hope to enrich scientific as well as literary research, xiv Series Preface and to cultivate a new cross-disciplinary approach to fundamental questions in both fields.

Ihe series will encompass topics from across the physical, biological and social sciences, medicine and technology, wherever literature can inform our understanding of the science, its origins and its implications. It will also include books on literary forms and techniques that are informed by science, as well as studies that consider how science itselfhas been articulated. Along with literature in the broad sense of written texts, books in the series will also consider other cultural forms including drama, film, television, and other arts and media.

John Holmes, Anton Kirchhofer and Janine Rogers

Introduction

Alzheimer’s disease: A twenty-first-century first-world scare

She was not Inés any more, she was only a body in front of the doctor, a handful of inner organs, two lungs, a brain that was destroying itself. Andrés Barba, Ahora tocad música de baile’

We are, above all, human beings with strengths and weaknesses, highs and lows, and with a disease that touches an organ of our body: the brain. Claude Couturier, Puzzle, Journal d'une Alzheimer?

When we think about dementia or Alzheimer’s disease, we think about it in terms of loss: the loss of mental capacity, the loss of skills and agency, the loss of memory, identity and personhood.’ This book charts the development of this discourse from its origins in the nineteenth century to the present day and specifically considers concepts that have shaped the neurological and psychological understanding of dementia. It explores the extent to which the societal dementia discourse, which induces Andrés Barba to remove Ines’s personhood and reduce her to mere bodily parts, is rooted in a science-led and medicine-adopted discourse. This discourse relates the broad-spectrum concept of loss of cognition, personhood and identity to the actual loss of cells in specific brain areas, as illustrated by the following extract from Brain Facts, a public information initiative of the Society for Neuroscience launched in 2012:

Initially, people experience memory loss and confusion ... symptoms of AD [(Alzheimer’s disease)] gradually lead to behavior and personality changes, a decline in cognitive abilities such as decision-making and language skills ... AD ultimately leads to a severe loss of mental function. These losses are related to the worsening breakdown of the connections between certain neurons in the brain and their eventual death.*

I worked in experimental research related to Alzheimer’s disease and other forms of dementia for fifteen years and have participated in this scientific discourse. Underlying it is what Nikolas Rose and Joelle M. Abi-Rached have termed a ‘neuromolecular style of thought. This way of reasoning argues that mental states express themselves in material processes in the brain, and that these processes can be anatomized at a molecular level.” Applying this style of thought to reading literary texts could lead me to argue that a focus on unravelling molecular mechanisms of cell death in dementia has reduced patients to mere carriers of symptoms; and that this reductionism, as we hear it in the voice of Inés’s husband Pablo, underestimates patients’ need for and right to dignified care. But how well can Inés’s objectification be explained by the appropriation within caregiver discourse of scientifically and medically sanctioned concepts of loss and reduction? Or is Pablo’s objectification of his wife the result of overwhelming burdens of care placed on the caregiver? These questions bridge material-scientific and discursive-cultural understandings of Alzheimer’s disease.

Concern with this nexus of issues has pushed my research interests more and more towards the intersection of literature, science and medicine. I began to focus on the context in which specific scientific and medical texts have been produced. I had to change my view of scientific work as being merely an isolated discipline of knowledge acquisition: science and its published products are clearly a form of culture. The process in part has turned me into a subject of my own enquiry, as I have come to understand my scientific research as historically situated. My initial work developed in the context of the early 2000s’ fascination with biomarkers (which this book covers in Chapter 5), while later studies, in the framework of my Habilitation, evolved in response to growing doubts about the validity of specific disease hypotheses (discussed in Chapter 7). But this is not to say that this study is an auto-ethnographic work by a neuropharmacologistturned-health-humanities researcher; nor is it evidence of lived two-culture splits that tell of the frustrations of a scientist healed by turning to literature. Science is neither weak nor wicked. It studies aspects of health and disease which the health humanities have no access to; and, vice versa, the medical humanities open additional perspectives onto health and illness.

But medical systems, especially in rich societies, have increasingly failed the patient. This is a phenomenon not unique to dementia: patients are objectified in the process of diagnosis and functional assessment of many diseases, and healthcare programmes continue to develop around the notion of the patient as burden and as having no voice.’ The patients diminished capabilities, dependence and passivity are central to the cultural dementia narrative (i.e.

how the conditions nature and patient’s identity are perceived and understood in Western societies today); and this narrative has become core to beliefs about dementia in the wider cultural and societal discourse. As this book will show, health humanities work, including literary scholarship, has greatly assisted the patient on the journey back to centre stage. Yet, this has come at the price of what I increasingly perceive to be an antagonistic mode that sets up the sciences against the humanities. This happens because the biomedical approach has become a hold-all for processes that remove the personhood from the patient, where the effects of the scientific and the medical are insufficiently separated out, either in terms of discourse developments or in terms of their preferred methodologies, goals and interest groups.’ This study, although it strongly aligns itself with the medical humanities, is not a priori intended as a ‘challenge and corrective to the hierarchies of evidence that have come to define theoretical, practice-based and policy-oriented instantiations of the biomedical.’ Rather, it will illustrate how current criticism of the biomedical approach could be more nuanced by drawing attention to the crucial difference between the process of methodological reductionism in science research and notions of objectification in medical and clinical practice.

This book explores to what extent the current cultural dementia narrative is grounded in historical scientific and medical language related to brain diseases, beginning with its origins in the nineteenth century, when the condition was first described as an organic disease, to the present day, when it is viewed as a disorder of cognition. I pursue a historical approach, because I share the view of medical historian Jesse F. Ballenger that ‘without a sense of history, without the ability to construct a coherent narrative linking the present to the past as well as the future, public discourse on Alzheimer’s will itself be confused, disoriented.!’ I pinpoint changes in the scientific and medical understandings of dementia throughout the long twentieth century, and examine how these changes have influenced the wider cultural thinking about dementia over time. I take Ballenger’s groundbreaking study as an invitation to historicize the literary approaches to dementia and Alzheimer’s disease. Marlene Goldman has thought along these lines in her recent work on narratives about Alzheimer’s disease in Canada. She turns to literature ‘because fiction often explicitly or implicitly adopts a non-biomedical, historical approach to dementia, although she largely focuses on how current literary productions explore historically inflected notions of the condition.”

The present study, by comparison, takes literary writing as an active contributor to discourse developments throughout the entire period under investigation; in doing so, it critically negotiates the possibility that literary writings perpetuate and enhance biomedical discourse. It contends that whole-person approaches - approaches that acknowledge the patient as a feeling, thinking, communicating and engaging individual, with a mind and world of experience of their own - can integrate an understanding of Alzheimer’s disease as a local pathological entity - an organic condition of the brain. Conversely, I argue that considering Alzheimer’s disease as a whole-person phenomenon can equally subject the patient to a process of objectification ascribed to biomedical discourse. My overarching aim is to understand where the cultural path taken by the presentation and perception of dementia - since its respective definitions as an organic disease around 1900 and a cognitive, performance-limiting condition around 2000 - leads the illness and its sufferers to in the twenty-first century. Two processes interest me in particular: how have literary renderings of dementia been shaped by an evolving medico-scientific dementia discourse, and how has this cultural narrative fed back into the scientific and medical gaze at the condition? To address this, I will attend to four different kinds of text: fiction (including film), caregiver accounts, patient life-writing, and scientific and medical texts as well as their popular echoes in mass media reports and generally accessible scientific book publications.

Fictional representations can be understood in part as an expression of societal and cultural developments, and fictional depictions such as Andrés Barba’s can be taken as both a product and an illustration of the current cultural dementia narrative. Caregiver life-writing, in turn, gives us a glimpse into how family members make sense of the illness; but the existence of these texts itself appears to objectify the patient. Such objectification has motivated individuals like Claude Couturier to reclaim identity and selfhood through their writing. Patient accounts convince me that dementia life-writing is well positioned to instigate a counter-discourse that focuses attention on patient experience and makes this experience central to both: the medico-scientific understanding of the condition and sociopolitical approaches to the illness." Cultural renderings of dementia and ageing, indeed, do feature in more and more specialist clinical journals.’ These papers evince a clear interest by the medical and scientific professions in cultural representations of dementia. They also suggest that cultural images as well as the patient’s and caregiver’s own writing can reshape medico-scientific dementia discourse: I will explore this through analysis of a selection of scientific and medical research papers.

These different types of text already point to the fact that the condition is not only a scientific concept caught up in what Oliver Sacks termed neurology’s

‘deficit’ language: language that denotes ‘loss of speech, loss of language, loss of memory, loss of vision, loss of dexterity, loss of identity and myriad other lacks and losses of specific functions (or faculties)." It is also an experience. And as such, the narrative of loss in relation to Alzheimer’s disease reaches beyond what the biomedical model of the condition can explain. With the rise during the second half of the nineteenth century of cellular theories and the notion of mental life residing in a granular substance, the cell came to be understood as the locus of the disease. Wider cultural discourse began to link the integrity of the cell to that of identity. As William R. Clark puts it in his account of cell death as a creative principle, ‘Human beings seem to have decided that cells of the brain are more important in defining life than other cells!‘ Once brain had acquired mind, wider sociocultural concepts equated the loss of cognitive skills and memory with the patient’s loss of awareness and self; and concepts that link a sense of self to a sound mind (hence functioning brain) and intact memory link this sense of self also to the ability to narrate.'’

In addition, there is a growing preoccupation with dementia as the synthesis of old age and illness.'* Ageing itself is equated with experiencing loss - the loss of family and friends, the loss of opportunities, power and prowess.'? Celebratory perspectives on ageing - notions of gain, growth and progress - hardly seem to feed into the current cultural dementia narrative. Instead, biological understandings of ageing appear to reinforce a dementia narrative that centres on loss; and a lot of gerontological research and geriatric practice integrates ‘social values responsible for ageism and the declining status of old

>20 people. On top of all this, the perception of dementia has become yoked to loss of wholeness, loss of certainty, loss of control, loss of freedom to act, and loss of the familiar world’ that is fundamental to any experience of severe illness.*!

Ihe cultural profile of the condition is partly related to significant demographic shifts in Western societies and the politicization of these shifts. Alzheimer’s disease has become the most common form of dementia among the elderly. And, representing the most feared neurological condition today, it has also turned into a trope for all forms of dementia. This anxiety is played on by the popular press in relation to the condition’s epidemic proportions. Cultural figures about dementia include images of a ‘rising tide’ and ‘millennium demon; and the condition has become a metaphor for all kinds of sociopolitical ills.” This is also the case because plague-like terminology abounds which, as Susan Sontag explicated in relation to a quite different disease, has long been used metaphorically as the highest standard of collective calamity, evil, scourge ... Although the disease to which the word is permanently affixed produced the most lethal of recorded epidemics, being experienced as a pitiless slayer is not necessary for a disease to be regarded as plague-like. [An illness] has been regarded as a plague ... not because it killed often, but because it was disgracing, disempowering, disgusting.”

This book will delve into the historical grounding of objectifying patient presentations and explore how specific metaphorical language became affixed to condition and patient.

Dementia in history

Dementia has been conceived of as both an abstract and isolated molecular event and a condition related to an individual as a whole. Recent sociological work elaborates on these continued tensions: first, whether behavioural changes are the manifestation of a distinct pathology or are inherently related to ageing; second, whether specific organic changes in the brain cause behavioural changes or whether the process of ageing itself impacts on the mind and leads to changes that are pathological; and third, whether dementia is socially conditioned or genetically programmed.”

While the second and third such tensions emerge successively from medico-scientific work at the end of the nineteenth and twentieth centuries, the first issue resonates with longstanding ideas about memory loss and ageing. Homer associated ageing with physical change, Juvenal coupled it with ideas of second childhood and foolishness and Horace described it as anticipating death.” In ancient Greece, figures of public life, such as Xenophon, ‘hesitated to live a longer time lest he be forced to pay the penalties of old age - to ... fail in intellectual capacities’; and literary representations feature characters like Strepsiades in Aristophanes’s comedy The Clouds, who ‘has a bad memory, is dull of comprehension, and is too old to learn.” I agree with Pat Thane that we should not draw simplified cultural perceptions from classical Greek comedy.” But such literary stereotypes could not exist in a conceptual void, even if modern scholarship of classical texts can find almost no reference ‘specific to mental illness in old age‘

I do not claim that the present-day cultural dementia narrative has its roots in the Ancient World, nor do I read currently recognized symptoms of dementia into the cultural expressions of a society that thrived more than two thousand years ago.” However, I agree with Helen Small ‘that what philosophers and nonphilosophers have had to say about old age has, in essence, changed very little since classical antiquity? Shakespeares King Lear is perhaps the most frequently mentioned post-classical portrayal of ageing as a state characterized by memory loss and ‘second childhood’ In common with Nina Taunton, I identify Lear as ‘driven by anger and shame, two emotions associated with aged impotence, as acting under ‘a misguided belief that he continues to wield power over his children and over nature itself.” Yet, Lear’s behaviour is frequently linked to Alzheimer’s disease. Work claiming parallels between Lear and the clinical case of a ‘frail elder’ and probable Alzheimer’s, that “Lear’s increasing isolation results from a tragic combination of cognitive impairment, caregiver stress, and generational conflict; is one such example.” Shakespeare’s interest in the development of character and familiarity with the human experience have been observed to invite continuous reinterpretation for a contemporary audience.” Still, I read such contemporary keenness to identify Alzheimer’s disease in cultural representations of the Antiquities, Middle Ages and Early Modern Times first and foremost as a manifestation of the current societal concern with the condition.

From the end of the sixteenth century until well into the eighteenth, the term ‘dementia was employed as synonymous with ‘melancholia and ‘madness: By the late eighteenth century, the term held the meaning ‘out of one’s mind, around the time when the condition began to be treated as a mental illness.” This idea of the condition built on a growing interest in brain pathology, which emerged from the biological psychologies of Erasmus Darwin, Franz Josef Gall and other brain scientists, from the 1790s onwards, and played a crucial role in establishing the brain ‘as the organ of thought.” Methodological progress and technical advancements which became available towards the end of the nineteenth century supported the idea that the various morphological subdivisions of the brain consisted of discrete areas of particular function, which enabled development of a ‘materialist science of the self.” By the 1880s, biological explanations of physiological phenomena also included a changing conceptualization of dementia.

The structure of the modern sciences of memory became established between 1874 and 1886.” In particular, lesion theories began to fuel enquiries into potential links between bodily signs (symptoms related to a failing mind) and organic (cerebral) changes. The changing methods of clinical observation led, as Michel Foucault argued, to the ‘projection of illness onto the plane of absolute visibility’ and a ‘gaze [that] dominat[ed] the entire field of possible knowledge.”

Alois Alzheimer’s case of Auguste D. in 1906 is widely considered a landmark.” But it was part of a much larger shift in the discipline’s approach to dementia, driven by new methodologies that created different conceptual perspectives.“ In this instance, the new methodologies included an expanding array of visualizing techniques, among them a nerve cell staining method developed in 1872 by Camillo Golgi (1843-1926). This staining technique enabled the study of the morphology of the brain, including pathological changes. And this, in turn, fuelled in the wake of Alzheimer’s work a neuroscientific redefinition of the condition as an organic disease of the brain.

The nineteenth-century fin de siécle has attracted scholarly attention not only because of the ‘new technologies that became available ... the new sites of scientific enquiry thereby opened, and the new forms of knowledge they facilitated. It was also a time when ‘biological explanations of psychological states held sway’ and ‘ideas about the functioning of the mind and body seeped from science into broader cultural discourses.“ In the context of the memory sciences, literary notions of memory impairment throughout the nineteenth century became increasingly related to concepts of lesion as a form of loss. Nicholas Dames, for example, establishes a clear link between the researched understanding of memory and the literary representation thereof, and Sally Shuttleworth shows how fictional representations of memory changed during the second half of the nineteenth century.“ Also from a wider cultural perspective the fin de siécle makes a suitable beginning for this study. The concept of identity in dementia has shifted in response to changes in the meaning of terms such as ‘idiocy; ‘retardation, ‘senility’ and ‘madness.“ These shifts happened, towards the end of the 1800s, in response to changing societal preoccupations, scientific understandings and wider cultural concerns about health and disease.” And related to this, socio-economic, political and legal language at the fin de siecle assumed a decidedly degenerative aspect.“ This suggests there existed, at the end of the nineteenth century, a range of dimensions to the cultural counterparts of the evolving medico-scientific discourse of dementia.