Popularizing Dementia: Public Expressions and Representations of Forgetfulness [1. Aufl.] 9783839427101

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Aagje Swinnen, Mark Schweda (eds.) Popularizing Dementia

Aging Studies | Volume 6

The series Aging Studies is edited by Heike Hartung, Ulla Kriebernegg, and Roberta Maierhofer.

Aagje Swinnen, Mark Schweda (eds.)

Popularizing Dementia Public Expressions and Representations of Forgetfulness

Gedruckt mit freundlicher Unterstützung der Geschwister Boehringer Ingelheim Stiftung für Geisteswissenschaften in Ingelheim am Rhein.

Bibliographic information published by the Deutsche Nationalbibliothek The Deutsche Nationalbibliothek lists this publication in the Deutsche Nationalbibliografie; detailed bibliographic data are available in the Internet at http://dnb.d-nb.de © 2015 transcript Verlag, Bielefeld

All rights reserved. No part of this book may be reprinted or reproduced or utilized in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publisher. Cover layout: Kordula Röckenhaus, Bielefeld Printed in Germany Print-ISBN 978-3-8376-2710-7 PDF-ISBN 978-3-8394-2710-1

Contents

Popularizing dementia. Public expressions and representations of forgetfulness

Aagje Swinnen & Mark Schweda | 9

I.

L ITERARY FICTION

The locus of our dis-ease. Narratives of family life in the age of Alzheimer’s

Lucy Burke | 23 Deconstructing the American family. Figures of parents with dementia in Jonathan Franzen’s The Corrections and A.M. Homes’ May We Be Forgiven

Sadie Wearing | 43 Purging the world of the Whore and the horror. Gothic and apocalyptic portrayals of dementia in Canadian fiction

Marlene Goldman | 69 Narrating the limits of narration. Alzheimer’s disease in contemporary literary texts

Irmela Marei Krüger-Fürhoff | 89 The ‘terrifying question mark’. Dementia, fiction, and the possibilities of narrative

Naomi Kruger | 109

6 | C ONTENTS

II.

ART , ARTISTIC APPROACHES , AND FILM

Dementia on the canvas. Art and the biopolitics of creativity

Scott Selberg | 137 Cultural projection of dementia in the Reminiscence Museum . Dynamics of extrapolation

Elena Bendien | 163 Opening Minds through Art. Students’ constructions of people with dementia

Oliver R. Hautz | 185 ‘Zip!’ Dementia materialized in clothing design

Sonja Iltanen | 205 Challenging representations of dementia in contemporary Western fiction film. From epistemic injustice to social participation

Andrea Capstick, John Chatwin, & Katherine Ludwin | 229 Intercorporeal relations and ethical perception. Portrayals of Alzheimer’s disease in Away from Her and En sång för Martin

Lisa Folkmarson Käll | 253

C ONTENTS | 7

III.

MEDIA DISCOURSES AND PUBLIC UNDERSTANDINGS

Dementia in the making. Early detection and the body/brain in Alzheimer’s disease

Annette Leibing | 275 The meanings of early diagnostics for Alzheimer’s disease in Dutch newspapers. A framing analysis

Yvonne Cuijpers & Harro van Lente | 295 Respect for autonomy? The contribution of popular magazines to the public understanding of dementia care

Sanna Inthorn & Julia Inthorn | 315 Representations of Alzheimer’s disease among non-specialists. A cross-cultural study between Paris and Boston

Marie-Christine Nizzi | 333 In the company of robots. Health care and the identity of people with dementia

Ike Kamphof | 359 The zero-degree of dementia. Thinking the gap between subject and substance

Elana Commisso | 377

Acknowledgements | 403 Authors | 405

Popularizing dementia Public expressions and representations of forgetfulness A AGJE S WINNEN & M ARK S CHWEDA

Owing to aging populations, the transformation of national welfare systems, and advances in biomedical research and diagnostics, late onset dementia is shifting to the center of current debates in bioethics, in social policy, and among the broader public. In these contexts, the condition does not just constitute a target of intensive neuro-scientific research and biomedical treatment approaches. It is, at the same time, experienced as a personal fate, negotiated as a challenge to established relationships and family ties, and discussed as a major problem for policy makers and society at large. Political statements and public campaigns postulate that “dementia poses one of the greatest societal challenges for the 21 st century” (WHO 2012: 90), address Alzheimer’s disease as the “21 st century plague” (Smyth 2013), or even declare a “war on Alzheimer’s” (for a critical analysis, cf. George and Whitehouse 2014). Countering such negative imagery and alarmist rhetoric, an increasing number of patient organizations, political initiatives, and academic approaches also advocate different understandings of dementia and a more open, inclusive, and accepting attitude towards those affected. Thus, many self-help groups are oriented toward the reality of ‘living with dementia’ and promote the creation of dementia-friendly environments and communities. Summarizing these kinds of endeavors, Alzheimer Europe hosted its 2013 conference under the banner of “living well in a dementia-friendly society.”

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T HE ‘ DEMENTIA BOOM ’ One effect of this development could be labeled as a cultural ‘dementia boom’: The concept of dementia is no longer limited to expert biomedical discourses, but gets integrated into public imagination and popular culture. That way, it also gains multiple new interpretations, evaluations, and functions in a variety of cultural domains, social spheres, and national contexts. ‘Dementia’ shows different qualities and appearances in film, literature, or art with their respective traditions, formal conventions, and aesthetics. It is also perceived and experienced differently in the political, economic, and socio-cultural contexts of countries such as Germany, India, or the United States, with their specific health care systems, political cultures, and legal frameworks (Williams, Higgs, and Katz 2012; Holstein 2000; Cohen 2000). Finally, being personally affected is believed to constitute a radically different perspective, one that may provide new contributions to popular culture, but also poses fundamental challenges with regard to its translation into common semantic idioms and conventional symbolic forms and orders (Gubrium 2000). This volume is dedicated to the expressions and representations of dementia in contemporary popular culture. Its overall conception is aimed at summarizing and systematizing current research trends in the field of dementia studies. With the specific combination of humanistic, (bio-)ethical and socio-cultural approaches, we hope to provide insight into the state of the art and to promote theoretically and methodologically innovative perspectives. The central topic is approached from different angles: On the one hand, contributions investigate how individual and social ideas and images of dementia are – and should be – shaped and negotiated in film, literature, arts, and the mass media, thereby examining the range of cultural manifestations of dementia, their underlying formative factors, and their broader societal significance. On the other hand, the volume also explores how the symbolic forms provided by popular culture are – and can be – adopted and transformed by those affected in order to express and communicate their own perspectives and experiences. Popularizing dementia thus illuminates the scope and ambivalence of popular culture: its tendencies to reproduce and enforce reduced, distorted, or ethically problematic images and stereotypes that obscure or repress other viewpoints, but also its potential to initiate alternative and critical counter-discourses as well as to express a fuller range of perspectives on dementia.

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PERSPECTIVES ON DEMENTIA Contrasting the dominance of naturalistic, neurobiological and biomedical discourses, dementia studies aims at a better understanding of dementia as a cultural phenomenon. In the Western context, the condition is increasingly used as a metaphor for the aging process itself as a stage in the human experience that needs to be fought by all means (cf. Zeilig 2013; Leibing and Cohen 2006). Understanding the multiple ways by which dementia, while biologically influenced, is at the same time culturally constructed contributes to the fight against stigma and can improve the wellbeing of people with dementia and their caregivers. In this sense, dementia studies has a normative dimension. The so-called personhood movement in dementia studies (Leibing 2006: 242) was the first to draw attention to the ethical implications of positioning dementia as a disease of the brain and, consequently, its sufferers as ‘lost selves.’ It attempted to bring alternative philosophical models of personhood to the fore in order to stress that persons are more than their brains, that personal identity does not rest only on mental continuity, and that the story of dementia exceeds that of tragic loss and decline. Two such models have proven to be particularly influential in countering the dominant perspective that designates the mind as the locus of the person: the notion of embodied personhood and the concept of relational selfhood. Both have been instrumental in correcting overly individualistic and rationalistic understandings of the human condition and in challenging the value system of our ‘hypercognitive society’ (Post 2000). Over the years, the theoretical investment in these models has also increasingly and successfully been connected to the more empirical study of dementia care and dementia experiences. The model of embodied personhood, for instance, originating from the phenomenological writings of Merleau-Ponty, has been instructive for ethnographic research into how people with dementia can maintain their personal identity and productively engage in activities by relying on embodied memory rather than on cognitive capabilities (e.g., Kontos 2005; Moser 2010). The model of the relational self has been used for the reconceptualization of individual autonomy and the systematic assessment of institutional care practices, e.g., Kitwood’s (1997) approach to malignant versus personhood-upholding interferences, which has developed into the certified method Dementia Care Mapping, currently implemented in several countries.

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These theoretical models continue to help build new bridges among different disciplines that have gained interest in dementia. Thus, science and technology studies now examines how technologies for frail elderly including people with dementia – still often designed without consulting the people the technology is meant for or evaluating their real care needs – interact with people with dementia and their caregivers (cf. Kamphof in this volume). The call for more dementia-friendly communities can take its cue from disability studies, which has longstanding expertise in and experience with both fighting negative stereotypes of disabilities and developing strategies for the inclusion and participation of people with disabilities. Also methodologically, disability studies can be inspiring in terms of how to ‘listen’ to the ‘voice’ of people with dementia by implementing approaches such as participant observation and photo voice. The study of dementia representations has scrutinized the incompatibility of traditional narrative forms with the account of dementia experiences (cf. Krüger-Fürhoff and Kruger in this volume), but also moves towards the analysis of care relations portrayed within novels and films as well as of affective components of ‘being in relations’ (cf. Burke, Wearing, and Folkmarson Käll in this volume). Creative arts interventions are called upon as a special type of person-centered care and have emerged as systematic and well-described approaches to care. Humanities and arts scholars (cf. Selberg in this volume) are increasingly getting involved in the study of these practices. As its core ideas receive wide recognition and successful adoption in medical anthropology, gerontology, health care studies, aging and disability studies, science and technology studies, as well as media studies, the personhood movement seems to enter into a more self-reflective and selfcritical stage. Scholars begin to take stock of what has been achieved so far and what new challenges lie ahead. Problematic aspects and applications of art interventions (cf. Selberg in this volume) or reminiscence therapy (cf. Bendien in this volume) are addressed and critically discussed. Moreover, the still-problematic ontological basis of current understandings of dementia and person-centered care is scrutinized (cf. Commisso in this volume). At the same time, the neuroscientific approach to dementia is redefining its position as well, modifying and complicating previous understandings of the condition. While consensus about the causes, diagnosis, and treatment of dementia is still not within reach despite enormous financial investments, new trends such as early detection (via genetic testing or imaging)

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and prevention (cf. Leibing and Cuijpers and van Lente in this volume) are redirecting the priorities of research, medical practice, and the pharmaceutical industry. More recent categories such as ‘mild cognitive impairment’ complicate the picture and pose new theoretical and ethical challenges (Schicktanz et al. 2014). With each new category of people who do not conform to dominant norms of being human, frequently backed-up and naturalized by allegedly objective scientific facts, it becomes more important to substantiate what it means to recognize those affected as persons: socially in terms of social participation (cf. Hautz, Iltanen, and Inthorn and Inthorn in this volume), culturally in terms of the production of meaning (cf. Kruger, Nizzi, and Capstick, Chatwin, and Ludwin in this volume), and politically in terms of citizenship (cf. Burke and Goldman in this volume).

T HE

CONTRIBUTIONS One way or another, all contributions in this volume are concerned with the theoretical and critical implications of the popularization of dementia: How does it change public and professional perceptions of ‘(un-)healthy’ aging? Where does popular culture promote a de-medicalization of dementia and initiate critical counter-discourses that help to express a fuller range of perspectives? Where does it just reproduce and reinforce reduced, distorted or otherwise problematic stereotypes that obscure other viewpoints? What influence do different national cultures, health care systems, and sociopolitical traditions have on the ways dementia is culturally framed? And how can the perspectives of people with dementia be recognized and communicated in popular culture? These and other questions are discussed in 17 chapters divided into three main parts according to the respective fields of popular culture under investigation: literary fiction; artistic approaches, design, and film; as well as media discourses and public understandings. The first part comprises analyses of dementia in contemporary literary texts. They offer insights into a variety of methodological approaches (i.e., affect theory, imagology, genre studies, and narratology) to different national literary traditions. At the same time, certain recurrent topics and tendencies emerge, especially regarding the cultural significance of literary portrayals of dementia as well as the aesthetic possibilities and limitations of narrative approaches to the subjective experiences of people with dementia and their relatives.

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In her essay “The locus of our dis-ease,” Lucy Burke examines narratives of family life in the age of Alzheimer’s. Against the backdrop of recent British policy debates, she provides a close reading of Margaret Forster’s Have the Men Had Enough? (1989), exploring the conjunction between contemporary Alzheimer’s culture and the ideological discourses of neoliberal capitalism. Burke pays particular attention to the ways in which this conjunction produces new, often fraught reflections upon the meaning of family relations as well as tensions between care for the self and care for others. This interest in the way dementia fosters the reconfiguration of familial obligation and care also characterizes Sadie Wearing’s contribution, “Deconstructing the American family,” in which she compares the portrayal of parental figures with dementia in Jonathan Franzen’s The Corrections (2011) and A.M. Homes’s May We Be Forgiven (2012). Wearing focuses on the often neglected symbolic role that the characters of the parents with dementia play in these novels that offer contrasting accounts of the disintegration and remolding of the suburban family. She discusses their wider implications for considerations of the dynamics, aesthetics, and affects associated with dementia in contemporary culture. The analysis of the two US-American case studies is followed by Marlene Goldman’s close readings of three Canadian novels, Sheila Watson’s The Double Hook (1959), Michael Ignatieff’s Scar Tissue (1993), and David Chariandy’s Soucouyant (2007) in “Purging the world of the Whore and the horror.” In Goldman’s interpretation, the texts under consideration rely on portrayals of old age and age-related dementia to identify and symbolically expel what the contemporary Canadian nation-state still deems ‘evil.’ They do so by relying on tropes that are characteristic of the Gothic tradition in the Canadian novel and that heavily intersect with the identity categories age, gender, and ethnicity. Irmela Krüger-Fürhoff’s essay “Narrating the limits of narration” examines narrations of Alzheimer’s disease in Jonathan Franzen’s short story “My Father’s Brain” (2001), Arno Geiger’s novel Der alte König in seinem Exil (2011), the autobiography Losing My Mind: An Intimate Look at Life with Alzheimer’s (2002) by Thomas DeBaggio, and J. Bernlef’s novel Hersenschimmen (1984). Against the background of the central role of narrativity in Western Culture, she examines how these texts explore the tension between narrative selves and their looming postnarrative conditions, thereby distinguishing different genres of Alzheimer’s stories. As Krüger-Fürhoff argues, these genres stand for diverging ways of

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narrating the limits of narration that Alzheimer’s disease entails. Her comparative analysis is paired with the essay “‘The terrifying question mark’” by the fiction writer Naomi Kruger. The piece explores the aesthetic possibilities and limits of creative writing by testifying to the struggle to evoke a literary character with dementia without reiterating doom scenarios and projecting agony onto both persons with dementia and their caregivers. Kruger weaves the story of a fictional character with dementia, parts of a fictional manual for ‘writers of dementia,’ and self-reflexive comments on the writing process into a multilayered collage. The aim is to suggest that fictional narratives may enable us to become more aware of our fears and expectations as well as that they could allow us to revisit the way we view people living with the condition. The volume’s second part comprises analyses of expressions and representations of dementia in artistic approaches to dementia care, design, and film. The contributions explore a whole range of different fields of artistic production and its aesthetic reception, from avant-garde painting over clothing design to box-office mainstream cinema. They discuss the didactic or therapeutic potential of visual and applied arts in the context of dementia, and also investigate their broader socio-cultural framing and function. In his chapter “Dementia on the canvas,” Scott Selberg points out new approaches to creativity and Alzheimer’s, recognizing the need to celebrate the value of art interventions while moving toward a more complex account of their place in representational culture. By examining the cases of William Utermohlen and Willem de Kooning, both artists famous for the art they made when living with Alzheimer’s, Selberg shows how presumed connections between art and dementia, as well as between the work and the personhood of the artist, influence the way the art is received and framed in the museum context. Elena Bendien’s contribution “Cultural projections of dementia in the Reminiscence Museum” sets out to show how the extrapolation of the prevailing cultural image of dementia towards the entire older generation can change our attitudes and actions in practical settings where older people with and without dementia live. The piece is based on ethnographic research conducted in the residential care facility of the Humanitas Foundation in Rotterdam which has set up a Reminiscence Museum to create an environment for older people to remember their past. Bendien describes how older people interact with the familiar domestic environment

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from the past and how this interaction can affect and fine-tune our perception of what can be called a dignified life with dementia. In “Opening minds through Art,” Oliver Hautz examines how students who participated in a creative arts project for people with dementia in the Midwestern United States constructed the artists they were interacting with as persons. Following the approach of Interpretative Phenomenological Analysis, his study supports claims about the benefits of interactions between people with and without dementia through service learning projects for students, volunteer opportunities for non-students, or simply through collaborative projects. Sonja Iltanen’s essay, “Dementia materialized in clothing Design,” turns to a different field of popular culture: the social construction and materialization of dementia in the design of dress. By analyzing garments specifically made for people with dementia in Finland as well as interviews with their designers, Iltanen makes clear that clothing design has the potential to enhance the functionality of the person with dementia, but can also include elements that are stigmatizing or even restrain agency. The study raises important questions on the ethical implications of design and shows an urgent need to work towards change in its development and marketing. In their chapter “Challenging representations of dementia in contemporary Western fiction film,” Andrea Capstick, John Chatwin, and Katherine Ludwin address the epistemic injustice of dementia representations in box office films such as Iris (2001) and The Notebook (2004), as well as in TV dramas such as Boss (2011) and Frankie (2013). In an attempt to move away from this epistemic injustice, in Capstick et al.’s collaborative documentary film project, Bay Tree Voices (2012), people with dementia emerge as knowledgeable and creative commentators, not only on the experience of dementia, but on a range of subjects including social history, moral values, and practicalities of everyday life. Contrasting this critique of mainstream film, Lisa Folkmarson Käll turns to cinematic portrayals of dementia as a way of reflecting ethical relations and decision-making in “Intercorporeal Relations and Ethical Perception.” Examining Away from Her (2006) and En sång för Martin (2001), she illustrates how alterations of self and self-experience in dementia are embodied and intercorporeal and cannot be understood in simple terms of diminishment or loss. While the two films differ in their portrayal of dementia, both show how embodiment and intercorporeality affect relations between persons with dementia and their relatives.

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The volume’s third part comprises contributions that investigate the images and understandings of dementia in the media and among the general public. They cover a whole range of different media discourses and areas, from newspapers and magazines to popular science journals and internet platforms. A recurring topic is the ambivalent role of new technologies, such as assistive robotics or monitoring systems, in the domestic sphere and care setting, as well as the uptake and negotiation of scientific and professional expert conceptions of dementia among the general public. Annette Leibing’s essay “Dementia in the making” explores the first manifestations of a ‘new dementia’ found in popular culture. Publications for the general public as well as advertisements are analyzed to trace two major shifts: a new focus on physical, behavioral, and psychological aspects of dementia, which is transcending its former definition as a merely cognitive disorder, as well as a strong movement in favor of early detection and prevention. Leibing discusses in how far these trends change the way individuals with dementia are perceived and perceive themselves. In their article “The framing of early diagnostic instruments for Alzheimer’s disease in Dutch newspapers,” Yvonne Cuijpers and Harro van Lente examine the meaning of early diagnostics by considering their framing in recent newspaper articles in the Netherlands. According to their analysis, the way in which early diagnostic instruments are provided with meaning through different framings matters. Many frames present early diagnostics as part of a bigger problem or a higher goal, thus giving it a specific meaning and legitimacy. In a similar vein, the contribution of Sanna and Julia Inthorn, “A different way of talking about dementia,” examines the discussion of dementia in three British magazines. The article combines perspectives from medical ethics and media studies, exploring to what extent magazines have the potential to show the personal experience of those living with dementia, to suggest their autonomy, and to connect readers on an emotional level with the interests of people with dementia. In her paper “Representations of Alzheimer’s disease among Non-Specialists,” Marie-Christine Nizzi presents results from a survey in Paris and Boston. She investigates how representations of Alzheimer’s vary between different cultural contexts and as a function of nationality, gender, age, and personal contact with people with dementia. The author suggests that the representation of Alzheimer’s evolves along the lifespan, with younger respondents being more receptive to information campaigns via the media and older respondents

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more in touch with a personal experience of aging via their own parents and relatives. In her article “In the company of robots,” Ike Kamphof traces the reiteration of malignant mechanisms and the potential for new, creative views on people with dementia in the context of assistive robotics. Employing a postphenomenological perspective on the ways technology and human beings shape each other, she explores the potentials and dangers of this emerging technology. Comparing public debates on assistive robotics with the vision developed in the film Robot and Frank, she argues that the latter can be read as an ironic commentary on and productive overcoming of recurrent stereotypes in the public discourse. In her essay “The zero-degree of dementia,” Elana Commisso discusses new approaches to re-thinking the subject and ontological basis of dementia. Traditionally, dementia and the experiences of persons with dementia have been conceptualized either from materialist/empirical (neurobiological) or idealist/socio-symbolic (transcendental, phenomenological, or semiotic) theoretical perspectives. Commisso argues that contemporary dialectical-materialist theories of subjectivity formulated by Catherine Malabou, Adrian Johnston, and Slavoj Žižek can offer new directions for rethinking and reconciling the dominant biomedical and social science discourses dedicated to thinking about and/or representing dementia. The idea for this volume first took shape at the workshop Bioethics and Sciences of Aging: The Case of Dementia in October 2012 at University of California, Berkeley’s Center for Science, Technology, Medicine, & Society. There the two editors – an aging studies scholar and a philosopher and bioethicist – first met and exchanged views on public expressions and representations of forgetfulness. A lot has happened in the meantime. Today, probably more than ever before, the topic of dementia engages political agendas, popular media, and public discourses around the world. Demographic disasters have been predicted, national dementia strategies have been devised, battles and whole wars have been declared, hopes and hypes have come and gone, as the struggle for understanding and recognition of those living with the condition continues. We hope this volume can provide both insights into and stimuli to the ongoing debates evolving around dementia in contemporary popular culture.

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R EFERENCES Cohen, Lawrence (2000): No Aging in India. Alzheimer’s, the Bad Family, and Other Modern Things, Oakland: UC Press. George, Daniel/Whitehouse, Peter (2014): “The War (on Terror) on Alzheimer’s.” In: Dementia 13/1, pp. 120-130. Gubrium, Jaber F. (2000): “Narrative Practice and the Inner Worlds of the Alzheimer Disease Experience.” In: Peter Whitehouse/Konrad Maurer/ Jesse Ballenger (eds.): Concepts of Alzheimer Disease: Biological, Clinical and Cultural Perspectives, Maryland: Johns Hopkins University Press, pp. 181-203. Holstein, Martha (2000): “Aging, Culture, and the Framing of Alzheimer Disease.” In: Peter Whitehouse/Konrad Maurer/Jesse Ballenger (eds.), Concepts of Alzheimer Disease: Biological, Clinical, and Cultural Perspectives, Maryland: Johns Hopkins University Press, pp. 158-180. Hughes, Julian C./Louw, Stephen J./Sabat, Steven R. (eds.) (2006): Dementia: Mind, Meaning, and the Person, Oxford: Oxford University Press. Innes, Anthea (2009): Dementia Studies: A Social Science Perspective, London: Sage. Kitwood, Tom (1997): “The Experience of Dementia.” In: Aging & Mental Health 1/1, pp. 13-22. Kontos, Pia C. (2005): “Embodied Selfhood in Alzheimer’s Disease: Rethinking Person-Centered Care.” In: Dementia 4/4, pp. 553-570. Leibing, Annette (2006): “Divided Gazes: Alzheimer’s Disease, the Person within and Death in Life.” In Annette Leibing/Lawrence Cohen (eds.), Thinking about Dementia: Culture, Loss, and the Anthropology of Senility, New Brunswick: Rutgers University Press, pp. 240-268. Moser, Ingunn (2010): “Perhaps Tears Should Not Be Counted but Wiped Away: On Quality and Improvement in Dementia Care.” In: Annemarie Mol/Ingunn Moser/Jeannette Pols (eds.), Care in Practice: On Tinkering in Clinics, Homes and Farms, pp. 277-300. Post, Stephen (2000): “The Concept of Alzheimer Disease in a Hypercognitive Society.” In: Peter Whitehouse/Konrad Maurer/Jesse Ballenger (eds.), Concepts of Alzheimer Disease: Biological, Clinical and Cultural Perspectives, Maryland: Johns Hopkins University Press, pp. 245256. Schicktanz, Silke/Schweda, Mark/Ballenger, Jesse F./Fox, Patrick J./Halpern, Jody/Kramer, Joel H./Micco, Guy/Post, Stephen G./Thompson,

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Charis/Knight, Robert T./Jagust, William J. (2014): “Before It Is Too Late: Professional Responsibilities in Late-onset Alzheimer’s Research and Pre-symptomatic Prediction.” In: Frontiers in Human Neuroscience 8/921. Smyth, Chris (2013): “Charities Urge Cameron to Fund War on ‘21 st Century Plague.’” In: Times, December 10. World Health Organization (WHO) & Alzheimer’s Disease International (2012): Dementia – A Public Health Priority, Geneva: WHO. Williams, Simon J./Higgs, Paul/Katz, Stephen (2012): “Neuroculture, Active Ageing, and the Older Brain.” In: Sociology of Health and Illness 34/1, pp. 64-78. Zeilig, Hannah (2013): “Dementia as a Cultural Metaphor.” In: Gerontologist 54/2, pp. 258-267.

I. LITERARY FICTION

The locus of our dis-ease Narratives of family life in the age of Alzheimer’s L UCY B URKE Alzheimer’s and the distance between parents and children were both diseases of contemporary life, unlikely to go away. (Hegarty 1995: 132)

The specter of Alzheimer’s disease (whether its legitimacy as a category is accepted or contested) dominates contemporary popular cultural discourse around both aging and dementia. The historical trajectory of this diagnosis, from its initial description in 1901 by Alois Alzheimer as ‘a peculiar disease process of the cerebral cortex’ to the name of a dementia ‘epidemic’ in the latter stages of the 20th century, has been attributed to the conjunction of a complex of disciplinary, economic, social, and political factors. The medical anthropologist Lawrence Cohen explores the medicalization of dementia as one effect of the development of geriatric medicine as a distinct research field that needed to separate ‘normal’ aging from particular disease pathologies. “Senility,” as Cohen puts it, “is split into the existential condition of ‘normal aging’ and the purified pathology of dementia” (2006: 5). This disciplinary ‘will to power’ also intersects with the economic interests and burgeoning power of global pharmaceuticals from the mid-20th century onwards and the identification and development of potentially lucrative new markets. Alongside this is the emergence of new and powerful constituencies such as the American Seniors Association and advocacy groups in the UK such as The Alzheimer’s Society each of which organize themselves around this kind of model of normal and pathological aging and

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make their claims for social, political, and economic recognition on this basis. Medical sociologists such as Jaber Gubrium (1986) identify one of the functions of the medicalization of dementia as a way for caregivers to manage the more disruptive aspects of the behavior of the person with dementia. The division of the disease into a series of stages, each with its own characteristics, provides a narrative structure in relation to which the experience of the disease can be plotted (often regardless of whether the behavior and symptoms of the person with dementia actually follow this model). As Cohen notes, “one of the dynamics of the age of Alzheimer’s is its apparent total biologization of senility: internal disease processes become not only the necessary but also the sufficient ground of all reasoned conversation on the recognition of behavioral change in late life” (2006: 7). The key point here is that the way we talk and think about dementia today is inseparable from the assimilation of a disease model that is produced, reproduced, and reinforced across a range of sub-disciplines and emergent medical technologies: neurology, genetics, geriatric medicine, neuro-psychology, and psychiatry. Dementia is no longer perceived to be a natural consequence of aging (despite the fact that the incidence of dementia increases exponentially with age) and this shift in thinking, buttressed by a nexus of institutional practices, research agenda, and economic pressures and interests, has profound effects upon the perception and experience of living with this condition. Alzheimer’s, in this sense, is not simply the name of a disease, it is the term around which a whole assemblage of problems and possibilities circulate. Crucially, it operates not only as the site upon which a range of bioethical debates are played out but as a form of cultural production in its own right. Across multiple locations, Alzheimer’s – as we now know it – has produced new commodities, new institutions, new markets, new alliances, new identities, new problems, and new creative possibilities. This essay aims to address the distinct contribution of literary culture and of a cultural materialist critical practice to our understanding of the political and ethical implications of the biomedicalization of dementia upon the concept of family and attendant notions such as dependency, obligation, choice, and individual agency. With close reference to Margaret Forster’s Have the Men Had Enough? (1989), a novel produced at the beginning of the so-called Alzheimer’s epidemic of the last 25 years, it sets out to explore the ways in which ‘Alzheimer’s’ as a historically distinct way of

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thinking about dementia serves to articulate concomitant transformations in the concept of family, including notions of familial obligation, personal choice, and the meaning of care. The essay begins by locating recent governmental representations of the ‘dementia challenge’ in the context of the broader economic, political, and social changes effected by neoliberalism. Using Forster’s novel as a symptomatic example, it then explores the emergent perceptions of dementia care that now dominate public discourse: a notion of caring as somehow discontinuous with normative familial relations and as an impediment to the flourishing of those around the person with dementia.

T HE ALZHEIMER ’ S S HOW The flyer for The Alzheimer’s Show (May 16-17, 2014), “the UK’s only dedicated exhibition and conference for carers, relatives and professionals living and working with Alzheimer’s and dementia,” promises to bring together “over 60 dementia and care exhibitors” at the Olympia conference center in London. The show is sandwiched between the usual Olympia fare of bridal shows, forensics, and counter terror expos – the combination of which befits the sentimental yet intrinsically violent logic of our current historical conjuncture and stands as a sad indictment of it. At £10 in advance and £16 on the door (with £1 off for concessions), tickets are less costly than usual but the pricing scheme and the marketing information on the website regarding projected visitor numbers and their professional profile underlines the commercial nature of the project. With its combination of service providers, specialist retailers, and inspirational lectures from ‘high profile speakers,’ The Alzheimer’s Show crystallizes a number of key transformations in contemporary thinking about dementia. First, it underlines the degree to which the way we talk and think about dementia today is inseparable from the assimilation of a disease model (Alzheimer’s) as the dominant category through which we make sense of cognitive impairment in later life. Secondly, it is indicative of a set of social and economic transformations surrounding the concept of care and indeed illness itself. The presence of a range of exhibitors comprising ‘expert’ care providers and retailers specializing in the production of ‘tailor-made’ products for people with dementia are markers of the movement of the concept of care from a primarily affective and private domain (the family) to the world of trained

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professionals, goods and services, ‘customer satisfaction,’ and statutory frameworks. This shift demonstrates the extent to which the biomedicalization of dementia occurs in tandem with a process of marketization in which the provision of services, service providers, and particular commodities are addressed to individuals or health providers as consumers. In other words, the logic of the market and its values infiltrates the experience and perception of what it means to live with dementia. The ‘age of Alzheimer’s’ is characterized by the emergence of a whole economy of preventative and therapeutic interventions, pharmaceutical and alternative treatments (from Aricept through to Zinc), and products aimed at the ever-growing market for dementia related goods. One exhibitor at the Alzheimer’s Show offers expensive jigsaws and picture books on the basis that these products have been developed in the light of years of experience and ‘research.’ One sees here, in the evocation of ‘research,’ the rhetorical appropriation of a discourse of expertise entirely continuous with the notion of Alzheimer’s as a complex and intractable problem for medicine. The unique selling point of this kind of consumer good resides primarily in an investment in the idea that it is the product of specialist expertise beyond the powers of ordinary people; in other words, this particular jigsaw differs from those superficially similar eleven-piece jigsaws bought for recreational rather than therapeutic purposes: in every ‘crisis’ a marketing opportunity. What I am trying to capture here is the way in which the medicalization of dementia and its entry into popular discourse as ‘Alzheimer’s’ has a range of effects, not least in the formation of new markets, new commodities, and new investment opportunities. Indeed, the ideological investment in the promise of a cure for this thus far incurable condition serves as one of the most powerful ideological legitimations for a range of ethically contested practices, from stem cell treatments to genetic research. Tracey Crouch (Conservative Member of Parliament for Chatham and Aylesford), in a debate in the UK parliament (28 November 2013), drew upon this kind of promissory discourse in order to argue for increased investment in global pharma: “The Government must do more to promote the commercialisation of research as these companies become a vital part of the ecosystem” (Hansard, 28.11.13). This maneuver indicates the ways in which ‘Alzheimer’s’ as a disease that currently exposes the limits of modern medicine is evoked in order to justify particular entrepreneurial, free-market practices (which,

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in turn, are presented as organic, ‘a vital part of the ecosystem’). The fact that the promised cure is always ‘just around the corner’ makes this form of speculation (both imaginative and financial) all the more seductive. Dementia recast as Alzheimer’s disease marks the horizon of current research and thus its most compelling justification.

A VERY

NEOLIBERAL CONDITION The transformations that I have been describing point to the intersection of contemporary Alzheimer’s culture (by which I mean the discourses, practices, representations, and political rhetoric that constitute and flow from this disease model) and the economic and political doctrine and practices that characterize neoliberalism. Referring to the proposition that free markets, entrepreneurialism, private property, and an ethic of individual choice should be the guiding principles of politics and economics, the neoliberal policies first introduced in the UK by the Thatcher governments of the 1980s (and continued under Tony Blair’s New Labour and the subsequent Conservative/Liberal Democrat Coalition) focus primarily upon the dismantling of the welfare state and the social consensus upon which it was founded. The tenet of social or collective responsibility thus gives way to a celebration of the unencumbered individual free to ‘choose’ to interact with the market as he/she so wishes. Choice, in other words, becomes synonymous with consumption, and the individual agent with the consumer. As Fredric Jameson notes, “the slogan of the market and its accompanying rhetoric was devised to secure a decisive shift and displacement from the conceptuality of production to that of distribution and consumption” (1991: 266). One of the reasons why this shift is so successful in ideological terms is that it is accompanied by a comprehensive metaphysical outlook that equates the mechanisms of the free market with human nature. Thus, Gary Becker, one of the most prominent neoliberal ideologues, remarked “I am saying that the economic approach provides an invaluable unified framework for understanding all human behaviour” (1976: 14). We see echoes of this rhetoric in the comment of Conservative MP Tracey Crouch cited above in which the commercialism of research is recast in organic terms as an aspect of our ‘ecosystem.’ The consequences of these shifts are complex but profound to the degree that the ideological logic of the free market has come to permeate and trouble conceptions of human connectivity at a very fundamental level.

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Becker’s notion that human nature itself both underpins, reflects, and legitimates his particular vision of laissez faire economics offers a model of human sociality wherein both public and private, formal and affective ties are shot through by the discourse of the market. In Liquid Love, Zygmunt Bauman explores the extent to which the language of economic losses and gains, investment and risk has come to permeate popular discourse around love and relationships: A relationship, the expert will tell you, is an investment like all the others: you put in time, money, efforts that you could have turned to other aims but did not, hoping that you were doing the right thing and that what you’ve lost or refrained from otherwise enjoying would be in due course repaid – with profit. You buy stocks and hold them as long as they promise to grow in value, and promptly sell them when the profits begin to fall or when other stocks promise a higher income. […] If you invest in a relationship, the profit you expect is first and foremost security. (2003: 13)

Bauman’s discussion of the proliferation of self-help guides and relationship manuals in which love itself is conceived of and mediated by a utilitarian and instrumentalist language of the business transaction, the cost/benefit analysis, and strategic risk management offers a vision of contemporary culture characterized by a constitutive insecurity. In the contemporary “domain of life politics,” he notes, “floating coalitions and drifting enmities are expected to coalesce for a time, only to dissolve once more and make room for other and different condensations” (ibid.: 34). This reduction of love and relationships to a form of exchange (the idea that we must ‘get something back’ from our love object or else move on to a more ‘profitable’ partnership) has significant implications for attitudes towards care and responsibility for others who are unable to reciprocate according to the logic of this ‘contract.’ We see the consequences of this idea at work in popular discourses around the personal costs of caring for a disabled or chronically/terminally ill ‘loved one.’ For instance, in her blog Dating Dementia, Nancy Wurtzel notes, “I’ve realized that without the first-hand experience, it is difficult to fully comprehend how dementia can ruin lives.” Like many similar bloggers, Wurtzel’s representation of the experience of care giving produces two bodies and two forms of suffering, that of the disabled/ill person and that of their carer. In this scenario, care giving itself is perceived as a form of suffering but crucially one that is often deemed to eclipse that of the disabled or ill person themselves; in other words, this is the suffering that matters both socially and emotionally, with that of the

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disabled/ill person all too often placed under erasure. Without wanting to understate the impact of increasingly unsupported care-giving upon peoples’ lives and relationships, my point here is that there is a continuity between the incorporation of the language of the market into conceptions of human relationships and current perceptions of care/caring as intrinsically burdensome and discontinuous with ordinary emotional and familial bonds. The language of the online community that has developed around the ‘Alzheimer’s epidemic’ is characterized by the language of deficit (loss/erosion/ decay) and of personal ruin which crystallizes around the figure of the parent/partner who fails to recognize the identity of their carer. In this instance, the ‘tragedy’ of dementia is popularly conceived of on the basis that conventions of exchange and thus of reciprocal interest are fundamentally violated. The shift in conceptions of human filiation described by Bauman as a form of ‘liquid love’ intersects with the political incorporation of an identity politics stripped of its collectivist aspirations and reworked as selfrealization or the priority of the individual to realize aspirations regardless of difference or the ‘protected characteristics’ enshrined in equal opportunities legislation. In Invented Moralities, Jeffrey Weeks identifies this as an unintended consequence of the ideology of the free market, noting that “if you have an absolute freedom to buy and sell, there seems no logic in blocking a freedom to choose your sexual lifestyle, your identity or your fantasies” (1995: 28). If this explains the superficially contradictory recognition of gay ‘rights’ (via the pink pound) by Conservative administrations in the UK, then it is important to emphasize the degree to which this process is contingent upon the postulation of a relationship between ‘rights’ and spending power. The ideological power of neoliberalism is tied to an assertion of the ‘end of history’ apparently manifest in the end of the class struggle as conceived of in Marxist political thought (cf. Fukuyama 1992). However, the social consequences of this economic and political doctrine play themselves out in the decimation of “the protected coverings that embedded liberalism allowed” and the establishment of “flexible labour markets” based upon “short term contracts, chronic job insecurities, lost social protections and often debilitating labour” (Harvey 2005: 168, 170). The production of “disposable workers” (ibid.), “human waste” (Bauman 2003a, 2003b), “surplus humanity” (Davis 2007: 174-198) or “revolting subjects” (Tyler 2012) expose the disjunction between the ideological self-

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representation (and thus legitimation) of neoliberal economic policies (as the key to ‘self-realization’) and the violent consequences of their implementation for the working class, poor women, migrant workers, disabled people, and ethnic minorities such as the Roma. We can identify the place of Alzheimer’s in this formation in the rhetoric of David Cameron’s recent Dementia Challenge launched in the UK in March 2012. Describing dementia as “one of the most important issues we face as a society,” Cameron states his determination “to go further and faster on dementia – making life better for people with dementia and their carers, and supporting the research that will ultimately help us slow, stop and even prevent the condition” (2012: 3). The foreword to the policy document frames the problem of dementia from the perspective of a personal empathy for the individual’s experience of living with the condition. “Imagine,” he notes, “feeling confused and afraid because close friends and relatives seem like strangers; being unable to leave the house alone because you might not be able to find your way back; or seeing the fear in your loved one’s face, as they struggle to make sense of familiar surroundings” (ibid.). However, the staged familiarity of this rhetoric belies a strategy that exposes some of the most acute fault lines in neoliberal discourse. Although this document opens with an appeal to the difficulties experienced by individuals in the face of dementia, the strategy itself is oriented around a primarily economic evaluation of the ‘cost’ of care. The government site devoted to improving care for people with dementia notes that the disease costs the economy £23 billion a year and estimates that by 2040, the number of people affected is expected to double and the costs are likely to treble. This reframes the notion of the impact of dementia upon the individual in favor of the assertion of an imminent resource crisis. In fact, the current and projected ‘costs’ of the ‘Alzheimer’s epidemic’ does not actually represent real spending but represents a figure of which 55 percent is accounted for by estimating the value of work done by unpaid carers. It therefore serves a primarily ideological function as far as it represents what appears to be a very large sum of money, the allocation of which will have significant social and economic effects. (It is worth bearing in mind here that current funding of the NHS amounts to £108.9 billion per year.) It is also important to note here that Cameron’s more recent speech at the global dementia legacy event in 2014 uses the resource implications of dementia to call for closer relationships between medical researchers and

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the market, the incentivizing of “partnerships between science and business” and tax breaks for any company that creates “intellectual property in the UK.” Presenting dementia as “one of the greatest threats to humanity,” Cameron draws upon the disease model of dementia in order to justify the further incursion of market forces into health care provision in the UK on the grounds that the solution to the problem of dementia lies in investing in global pharma and biotechs. Whilst the Dementia Challenge strategy document details funding opportunities and a range of dementia initiatives, the notion that the lives of those with dementia and the work of their carers should be supported is brutally undercut by the coalition government’s onslaught on welfare spending in the name of ‘hardworking tax payers.’ The effects of the latter objective mean that precisely those individuals and families whose emotional needs are apparently paramount are actually the subject of a swathe of cuts to local government funding and social care budgets. Research by Fernandez, Snell, and Wistow (2013) on changes in the patterns of social care provision in England between 2005 and 2013 identifies widespread reductions in the period, amounting to a 26 percent reduction in the number of recipients of care. One might view this as a failure of ‘joined up thinking’ or alternatively as an indication of the appropriation of the ‘problem’ of dementia for particular ideological ends in so far as the specter of Alzheimer’s offers a powerful image of the social and economic effects of the demographic changes we face, thus justifying a range of austerity measures. It is not incidental that ‘Alzheimer’s’ emerges into public consciousness as the name of a medical, social, and economic crisis in waiting in the same period that sees the implementation of neoliberal economic policies in the UK under Thatcher and the USA under Reagan. A review of journal articles in the MEDLINE database indicates that the concept of care as burden (and of caregiver burden as a recognized construct in this scholarship) emerges in precisely this period alongside the process that sees dementia re-constellated as ‘Alzheimer’s disease.’ The first journal article to describe the various costs of dementia care was published in 1980 (by Zarit, Reever, and Bach-Peterson) and contributions to this ‘problem’ have proliferated since then in tandem with the kind of societal shifts I touch upon above. We also need to view this particular notion of the costs of care in conjunction with what can only be described as a relentless will to legislate around care and care-giving in the post-war period. This is something that has occurred

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alongside the division of care into various domains of expertise and has operated according to a ‘top down model’ in which the people who require support are deprived of much of a say in the matter. In terms of dementia, there are, of course, reasons for the emergence of this so called ‘crisis of social care’ tied to the demographic shifts and problems of longevity identified in every piece of literature on dementia that one comes across. However, what I am interested in exploring here is how this particular way of thinking about dementia as ‘Alzheimer’s disease’ comes to articulate a broader range of societal transformations and the ideological tensions that traverse them. This is to argue that Alzheimer’s operates as a key ideological element not only in contemporary debates around the perceived crisis in social care and the consequences of an aging population in terms of resource but also in our understanding of the affective dimensions of care and of the family as its traditional locus. It is here that I would argue an engagement with the imaginative literature of the age of Alzheimer’s provides an important critical insight into the political and ethical implications of the biomedicalization of dementia upon ideas of family and attendant notions such as dependency, choice, and self-realization.

S TRUCTURES

OF FEELING I want to turn here to the concept of ‘structure of feeling’ – which is a term developed in the work of Raymond Williams, a scholar whose contribution to the elaboration of a politically engaged critical practice (cultural materialism) cannot be overstated. I think that an engagement with Williams’ work allows us to interrogate the debates about Alzheimer’s that I have been talking about in relation to the cultural forms (ideologies) through which people understand both themselves and the world around them. For Williams, the challenge faced by critics is the tendency of any analytical or critical description to transform its object into something finished or complete, “formed wholes rather than forming and formative processes” (1977: 128). What this fails to grasp or encapsulate, he suggests, is what he calls the “undeniable experience of the present,” the space “within which we may indeed discern and acknowledge institutions, formations, positions but not as fixed products, defining products” (ibid.). His aim here is to identify forms of “feeling and thinking” which, whilst “social and material” (ibid.), are not fully articulate or definite (ibid.: 131). This endeavor is, in part, about acknowledging social and cultural process and the interplay of what

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he terms dominant, emergent, and residual elements in any culture, but it is also about acknowledging those elements of experience, forms of consciousness or feeling that fall outside systemic beliefs/world views and institutional practices. Structure of feeling, for Williams, describes the “cultural hypothesis” through which he endeavors to capture this tension between systemic elements and emergent social experience. His interest in imaginative literature is in its capacity to capture this sense of dynamism and in its reflexive engagement with the interaction between societal and regulatory structures and interpersonal, social, and cultural formations. His argument is that the ways in which language and the experiences it encapsulates are mediated in literary discourse through the use of particular generic and formal conventions and techniques serves to expose the kind of ideological tensions and changes in meaning that are often “masked by a nominal continuity” (ibid.). My reading of the imaginative literature that has emerged in tandem with the Alzheimer’s epidemic of the last 25 confirms Williams’ recognition of the significance of imaginative literature in the expression and negotiation of the tensions between what he calls “practical and official consciousness” and emergent ways of “feeling and thinking” (ibid.). One point that needs underlining is the fact that the incorporation of Alzheimer’s into popular consciousness produces a plethora of novels in which the consequences of caring for someone with dementia and its impact upon familial relationships is placed at the center of the narrative rather than at its periphery. This is to say that dementia and caring become significant enough problems to initiate narrative rather than provide merely contextual detail. This shift arguably reflects the extent to which the biomedicalization of dementia and thus the separation of this form of cognitive decline from notions of ‘normal’ aging constitute it as a qualitatively different experience. The obligation of family members to look after each other which, in a sense, goes without saying in earlier periods, suddenly emerges as a problem around which questions of choice, guilt, and coercion coalesce. Margaret Forster’s Have the Men Had Enough (1989) offers a meticulous anatomy of the emotional and social pressures that circumscribe care and dependency as they are played out, predominantly amongst the women in a family in which the grandma is increasingly incapacitated by dementia. The narrative alternates between the first-person narrative perspectives of grandma’s daughter-in-law, Jenny, and Jenny’s daughter, Hannah. In so

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doing, it enables an exploration of different perceptions of the difficulties of caring as they are experienced by each woman, each at a different point in their life and each with different degrees of responsibility for others. However, this very structure also presents the meaning of care and the limits of familial obligation as potentially irresolvable problems in that these differing narrative perspectives cannot be resolved into a singular response. There is a sense throughout the novel that grandma’s dementia presents the family with an intractable problem for which no obvious solutions are forthcoming. It is also worth pointing out that Forster portrays care as a problem for everyone except the disabled recipient and object of this discourse – grandma – who is not given any kind of voice but whose needs are at the center of the narrative as it unfolds. In the novel, Jenny’s perspective is informed by what is presented as an intuitive but problematic desire to protect her husband from the practical and everyday aspects of care-giving, by her occasionally fraught relationship with her teenage children, and by a tense combination of obligation and irritation towards both grandma and Bridget, her husband’s sister and grandma’s primary carer. Her narrative account of the trajectory of grandma’s decline and death in residential care moves through a whole raft of emotional responses, from the anger that characterizes displaced guilt through to frustration and despair. In contrast to this, her daughter Hannah’s narrative records the family’s relationship to her grandmother’s needs at one remove: She is involved with aspects of her grandmother’s care, but is not an active participant in major decision-making, nor is she expected to shoulder the kind of responsibility that her mother and her aunt, Bridget, take on. Her narrative is often interrogative, organized around a series of questions that primarily revolve around her desire to make sense of Bridget’s relationship and commitment to her mother: What I want to know is: How can Bridget stay so cheerful? How can she forsake Karl for Grandma? How does she manage to spend any time with Karl at all? Why does she not want to spend more? (Forster 1989: 132)

Hannah’s questions structure a critical response to Bridget’s commitment to her mother’s care through the adumbration of a set of concerns about the quality of her happiness and the conduct of her relationship. Her speculations implicitly suggest that Bridget cannot really be cheerful and that she should prioritize her relationship with Karl. This evaluation of her aunt’s

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choices is arguably shaped by the kind of broader cultural assumptions about the priority of some relationships over others that I identified earlier in my discussion of Bauman’s (2003) concept of ‘liquid love.’ Hannah’s questions are underpinned by a partially articulated notion that caring for the elderly is intrinsically burdensome and unproductive; in other words, spending time with grandma is not only incompatible with ‘cheerfulness’ but it is also inappropriate given the presence of Karl as a more suitable object of affection. Significantly, Hannah also voices an uncompromising critique of her mother’s desire to ‘protect’ her father and brother from the day-to-day difficulties that caring for grandma presents. In this respect, Hannah vocalizes what could be described as a feminist critique of the traditionally gendered dimensions of caring but does so from a position that is infused by a characteristically neoliberal conception of the individual as the locus of all value. (Bridget’s choices are incomprehensible to her niece precisely because they appear to sacrifice self-fulfillment for filial obligation.) A significant proportion of Forster’s novel is devoted to the articulation of different familial responses to grandma’s need for care. This is primarily oriented around the ways in which these responses are shaped by a combination of particular and contingent factors – gender and the economic dimensions of care clearly play a role, as do personal choice, family history, and other unforeseeable and contingent events. This multi-perspectival approach underlines that there is no disinterested or neutral position from which to address the difficulties surrounding the presentation of the family. Yet, it also appears that these emotionally charged responses are preferable to the so-called ethic of professional detachment. This emerges clearly in the descriptions of the locked ward in which grandma eventually dies. Here Jenny’s narrative describes a malignant social environment that reduces individuals to problems or inconveniences whilst over-stretched staff struggle to meet the needs of their charges: No one came forward to greet us but it was tea time, everyone was busy. All the old women were seated round a long table being fed. There were four staff for the twenty women. The noise was terrible–wild cawings as though a clutch of rooks had settled there. One woman banged all the time with a spoon on the table and another shouted, ‘About bloody time! About bloody time!’ over and over. I pushed Grandma to the table, glad that I was behind her and could not see her face. The four staff members, in yellow overalls, stared at us, I asked if the Matron was around. I said we were expected. One of them went off, grudgingly it seemed and came back with a small squat woman in a blue and white uniform. […] While she addressed me, a

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white-haired sweet-faced old woman got up from the end of the table and shuffled down to stand beside me. She put her hand on mine and made some sound I could not distinguish. ‘Go away, Leah,’ the Sister said. ‘Go on, off with you, don’t bother the lady.’ I said she wasn’t bothering me and asked Sister what she had been trying to say to me. ‘She’s deaf,’ Sister said. ‘Nothing she says makes sense, don’t let her bother you, it doesn’t bother us.’ (Forster 1989: 202)

This passage is interesting in that it registers discomfort at the indifferent attitude of the ward Sister towards her patients but also expresses a degree of collusion with this perspective at the level of the descriptive language that Jenny uses to describe the women she sees. Her description of ‘wild cawings’ and the transformation of the women into ‘a clutch of rooks’ is echoed in the Sister’s reduction of Leah to her deafness and her description of the ‘sound’ that Jenny ‘could not distinguish’ as nonsensical. This language serves to reduce the women they describe and their endeavors to communicate into something meaningless and animal. Indeed, it is interesting here that Jenny’s descriptive language enacts a far more violent assault on the personhood of the women she views than the Sister’s impatient, professional indifference. The whole passage expresses a violence at the very level of representation that underlines the malignant effects of this particular kind of institutionalization and its impact upon people with dementia. There is a kind of horror in this related to the de-individuation that characterizes the organization of social care and the structural asymmetry of the professional caring relationship. The ward provides the women with basic elements of ‘care’ – food, security, and help with washing and dressing – but does so without paying any attention to the particularity of the person. It is interesting to note that Jenny states some relief that she cannot see grandma’s face – as if the exchange of glances would confer a degree of mutual recognition at odds with the dehumanization of the other women and thus the decision to place her on the ward. The culture of the locked ward is deliberately contrasted with the love manifest in Bridget’s relationship with her mother in the sense that this embodies a form of care that is reciprocal and symbiotic; interdependent rather than dependent. Bridget does not conceive of her responsibility towards her mother as a burdensome obligation. However, this kind of relationship is presented as both atypical and unsustainable. It is precisely the notion that Bridget’s desire to care for her mother is in itself problematic that serves as the catalyst that prompts narration. This very fact implies that

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this choice is questionable and troubling enough to merit (and to sell and market) a novel. Forster’s novel was published in 1989, prior to the kind of debates around welfare that are currently dominating governmental and media discourses but during the high point of Thatcherism and the particular form of individualism it fostered. The novel also predates the legal recognition of the rights and needs of non-professional carers in the UK. However, we can see in the younger character Hannah’s narrative an endeavor to work through the relationships between her notion of the priority of the needs of the individual, gender politics, and the problem of caring for someone who is no longer able to care for herself. What I think we see emerging in Forster’s novel is a fundamental shift in the notion of the family as the locus of care. This is evident in the very fact that the narrative focuses only upon the disputes, suffering, and difficulties that emanate from the last stages of grandma’s life. It is taken as read that the presence of a dying relative causes problems for the family, particularly those members of the family whose residual sense of obligation precludes them from simply putting grandma in a residential home. Operating alongside this is the idea that Bridget’s decision to place the care of her mother at the center of her life precludes her from realizing what should really matter in the form of ‘self-interested’ choices with regards to career aspirations and romance. We see here, in embryonic form, the articulation of a notion of relationships as primarily instrumental or reducible to some kind of cost/benefit analysis. In other words, when Hannah asks why Bridget chooses her mother over her relationship with Karl, the question is oriented around the belief that the relationships that matter are those that involve ‘getting something back’ for oneself. This perception of the priority of individual need over one’s responsibility to others is bound up with the belief that supporting another represents a threat to personal autonomy. Bridget is certainly presented as making puzzling and frustrating choices as far as the rest of the family is concerned – her desire to care produces guilt, anger, and occasionally pity but it is always the site of discord.

C ONCLUSIONS : A QUESTION OF FORM In his analysis of late capitalism, Fredric Jameson (1991) describes a formation in which there is no longer any space or hinterland that operates outside the logic of the commodity. The major subjective consequence of

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this is increased atomization and reification. These are phenomena that begin in the period of capitalist modernity when small scale production is replaced by the division of labor in the industrial factory system and later processes such as post-Fordism. This process reaches its height in our contemporary juncture with the kind of commodification of affect described by scholars such as Hardt and Negri (2000) and a culture in which the logic of the marketplace permeates life itself to the degree that everything, from our Amazon browsing history to Facebook status updates, is incorporated into the production of surplus value. In Have The Men Had Enough?, we see how the family itself, especially the new generation in the shape of Hannah, relate to the world in fundamentally individualistic terms. We can trace this through the use of the narrative technique of point of view. As Jameson argues, this narrative device emerges alongside the development of the 19th century novel and functions both as a reflection of the social and subjective experience of atomization, mediating “between the ‘superstructures’ of psychological or lived experience and the ‘infrastructures’ of juridical relations and production process” (2006: 140), and as an imaginary compensation for this experience. The key point here is that although capitalism is about class rule, the interpellation of the individual is a crucial element in its ideological project; the notion that the individual is at the origin of meaning and action in the world both occludes the reality of class struggle and confers an illusion of individual agency. In earlier forms of literary realism (the set of conventions that underpin Forster’s novel), the use of point of view or focalized perspective is often framed within an omniscient third-person narrative. For better or for worse, this form of narration serves to articulate a sense of shared communal values or class consciousness that operates ‘outside’ the narrative and therefore serves to orient, anchor, or stabilize the position of the reader in relation to an ethical or political evaluation of the text. However, the use of different narrative perspectives in Forster’s novel is not framed by a third-person perspective – and this is indicative of a loss of shared values or sense of collective endeavor at the heart of the family itself. What the novel plays out, then, is an incapacity to orient individual experience in relation to those structural coordinates that determine the ‘quality’ of that experience. We are offered different perspectives on care but little sense of the wider social, economic, and political determinants that

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underpin these perceptions and practices. At the level of both content and form, Forster’s novel is unable to provide any kind of imaginary resolution (to borrow Jameson’s formulation in The Political Unconscious) to the questions it raises. The only way the story can come to a close is with grandma’s death – an event which operates outside the logic of the plot which is primarily driven by the conflict between the different family members. Far from addressing the problems of care that both Jenny and Hannah’s narratives explore, this conclusion simply removes the origin of the problem but does so in a way which does not affect any particular transformation or learning on the part of the family. There is a sense here that the novel cannot move beyond the cognitive/cultural limits of the model of aging, dependency, and dementia that it – at times – appears to critique. The novel raises two questions then: First, what do we understand by the concept of family in the age of Alzheimer’s? And second, related to this, what do we understand by notions such as autonomy and individual self-realization in this context? There is an obvious paradox in the notion that caring for a family member is at odds with the needs and aspirations of the individual and that the necessity to care somehow disrupts one’s desired life narrative in that the reality of our ultimate and inevitable impairment always already consigns these beliefs to failure. However, it also gives rise to a culture in which to be disabled or old or chronically ill is to be an ‘unfair burden’; to be that which impedes or disrupts the fantasy of unfettered autonomy for the family member charged with your care. One sees in this what Slavoj Žižek describes as the onslaught of instrumental/objectivized ‘alienated public exchange’ into the private sphere wherein support for another is reduced to its cost in a whole number of senses. Ultimately, it is the person with dementia – grandma – who embodies the problem, rather than the ways in which her dementia is perceived by the different family members and in the narrative as a whole. The novel plays out the failings of the social care system, questions the vestigial sexism that shapes both the men’s (and Jenny’s) attitudes to this problem, and expresses the nascent effects of the kind of individualism that Thatcherism fostered, verbalized in Hannah’s narrative. However, the particular conception of dementia at its center means that it remains caught between the logic of these positions and is therefore unable to move beyond them to imagine a new sociality or collective response to the problem of caring and its impact upon the way we think about family relationships and the meaning of love itself.

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R EFERENCES Bauman, Zygmunt (1993): Postmodern Ethics, Oxford: Blackwell. --- (1995): Life in Fragments: Essays in Postmodern Morality, Oxford: Blackwell. --- (2003a): Liquid Love: On the Fragility of Human Bonds, Cambridge: Polity. --- (2003b): Wasted Lives: Modernity and Its Outcasts, Cambridge: Polity. Becker, Gary S. (1976): The Economic Approach to Human Behavior, Chicago: University of Chicago Press. Burke, Lucy (2000): “Consuming Subjects: Choice, Ethics and Individualism in Trainspotting.” In: Nickianne Moody/Julia Hallam (eds.), Consuming for Pleasure: Selected Essays on Popular Fiction, Liverpool: Liverpool John Moores, pp. 62-76. --- (2014): “Oneself as Another: Intersubjectivity and Ethics in Alzheimer’s illness narratives.” In: Narrative Works 4/2. Cohen, Lawrence (1998): No Aging in India: Alzheimer’s, the Bad Family and Other Modern Things, Berkeley: University of California Press. --- (2006): “Introduction: Thinking about Dementia.” In: Annette Leibing/ Lawrence Cohen (eds.), Thinking about Dementia: Culture, Loss and the Anthropology of Senility, New Jersey: Rutgers University Press, pp. 1-22. Davis, Mike (2007): Planet of Slums, London: Verso. Forster, Margaret (1989), Have the Men Had Enough?, London: Vintage. Gubrium, Jaber F. (1986): Old Timers and Alzheimer’s: Descriptive Organization of Senility, Greenwich, Conneticut: JAI Press. Hardt, Michael/Negri, Antonio (2000): Empire, Harvard: Harvard University Press. Harvey, David (2005): A Brief History of Neoliberalism, Oxford: Oxford University Press. Hegarty, Frances (1995): Let’s Dance, London: Viking. Jameson, Fredric (1991): Postmodernism, or, The Cultural Logic of Late Capitalism, London: Verso. --- (2006): The Political Unconscious: Narrative as a Socially Symbolic Act, London: Routledge. Shakespeare, Tom (2002): “The Social Model of Disability: An Outdated Ideology?” In: Research in Social Science and Disability 2, pp. 9-28.

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Tyler, Imogen (2013): Revolting Subjects: Social Abjection and Resistance in Neoliberal Britain, London: Zed Books. Weeks, Jeffrey (1995): Invented Moralities, Cambridge: Polity. Williams, Raymond (1977): Marxism and Literature, Oxford: Oxford Paperbacks. Zarit, Steven H./Reever, Karen E./Bach-Peterson, Julie (1980): “Relatives of the Impaired Elderly: Correlates of Feelings of Burden.” In: Gerontologist 20/6, pp. 649-655. Žižek, Slavoj (2002): Welcome to the Desert of the Real! Five Essays on September 11 and Related Dates, London: Verso.

Deconstructing the American family Figures of parents with dementia in Jonathan Franzen’s The Corrections and A.M. Homes’ May We Be Forgiven S ADIE W EARING Why torment ourselves with books? (Franzen 2013: 321) The figure is real like a political intent to subject her to the plural before our eyes, or, singularly, to power. (Brossard 1998: 116)

There have been significant (and contradictory) shifts in the signifying practices associated with aging in recent decades. In this climate, the figures of older people with dementia have acquired particular prominence. The meanings attached to the condition repay careful analysis, both for what they can reveal about the cultural politics of representing the person with dementia in ethical ways and in relation to how an aging population is being symbolically and affectively ‘managed’ through culture. Significant work is emerging on the role of cultural production in the processes of conveying understanding of the condition but also on the danger of reproducing dehumanizing tropes, instilling fear and aversion, and deploying dementia narratives as an alibi for other concerns. This paper explores the narratives of dementia in two US-novels against the backdrop of this critical (in both senses of the term) work in order to consider the contradictory ways that dementia is ‘figured’ and to comment on the social significance of such portrayals.

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The two novels considered here, The Corrections by Jonathan Franzen (2001) and May We Be Forgiven by A.M. Homes (2013a), offer a coruscating dissection of suburban US familial and cultural values and pathologies, as has been widely noted. Less noticed has been the role played by the parental figure with dementia. Here, I assess these figures’ symbolic and metaphorical significance and the wider implications of such literary accounts for considerations of the dynamics, aesthetics, and affects associated with dementia in contemporary culture. These novels, I argue, offer contrasting accounts of the disintegration and remolding of the US suburban family through their portrayal of parental figures with dementia. While literary scholars have linked these novelists together as sharing a set of concerns about the function of the “literary, postmodern realist” (Holland 2012: 221) novel, I demonstrate here that they have produced fictional accounts of dementia oriented in diametrically opposed ways. Homes’ characters are notable in that they are seen to experience the forgetfulness associated with dementia in ambivalent (even positive) ways and their symbolic function in the narrative of contemporary culture is therefore markedly different from the more familiar trajectory of the “tightly told tragedy” (Basting 2009: 40) that Franzen’s novel evokes. Nonetheless, despite their differences, the novels do share a concern with foregrounding dementia and can be seen as part of the wider process of reconfiguring the centrality of dementia as a signature cultural concern of the early 21 st century. My reading of these novels draws attention to how such literary accounts might illuminate the broader philosophical, ethical, and practical questions of ‘care,’ autonomy, and selfhood that the condition raises. My argument in relation to Franzen’s novel is that although it does reproduce problematic tropes of abjection and disgust in relation to the character with dementia, it also raises key questions about the nature of selfhood for everyone, linking the person with the condition to others. This is achieved in part through the utilization of multiple perspectives on the condition, stressing the interrelated questions of care, autonomy, and dependency. Relatedly, the novel’s structure has been read as mirroring the loss of ‘order’ associated with experiences of dementia with the dislocations of contemporary life (Rohr 2004). I consider here the significance of such an understanding of how the collapse of social meaning finds public expression in the narrative of dementia.

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A.M. Homes’ May We Be Forgiven presents a very different (and somewhat oblique) account of subjectivity and dementia. Here, a more optimistic narrative emerges which significantly departs from the narrative of decline (Gullette 2004) familiar to dementia scholars. In contrast to the motifs of disintegration attached to the condition in Franzen’s novel, dementia figures here as an opportunity for ‘positive’ forgetfulness. This produces a distinctly ‘queer’ understanding of autonomy, care, and the significance of the ‘postmodern’ chosen family (Roseniel and Budgeon 2004). As in Franzen’s novel, Homes’ narrative allows us to consider the questions raised by feminist theorists over the ‘ethics of care’ in changing social circumstances. Homes’ previous novels have been thematically concerned with the pathologies of the suburban American ideal (a concern shared with Franzen). This novel, I suggest, interrogates the naturalization of nuclear family values and challenges the dominant paradigms of dementia. This attunes the reader to a more variegated understanding of both dementia and the ethics and economics of caring. Homes posits an ethic of relationality which is not dependent on traditional ‘blood’ ties by offering an optimistic reconfiguration of ‘family’ which can encompass a range of forgetful rather than forgotten elderly people.

P OPULAR

FIGURATIONS OF DEMENTIA I have chosen to use the terms ‘figure’ and ‘figuration’ here to index the literary associations of the term. To figure is to draw for the reader a representation of a particular and unique character, which also draws on metaphor and symbol to engender meaning (Miller 1996; Cavarero 2002; Castañeda 2002; Tyler 2008). Significantly, the term also carries associations of generating a type or a trope, which has implications beyond the location in a particular text and connects the text to the social world of other constructions (literary or otherwise). This figural relation links diverse texts and sites and generates meanings and forms that construct understandings of the material and social world and its relations. This figure currently recurs across a range of seemingly divergent cultural and discursive sites (as this collection testifies) but my aim is to look closely at just two contemporary novels. Even within such a narrow range, it is possible to explore both the specificity of the figure and its relation to a wider discursive context. The differences in the ‘figuration’ I suggest are telling inasmuch as they offer competing insights into the ongoing construction of

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dementia whilst the comparison also stresses the growing popularity of the figure as a literary preoccupation used to comment on the wider social world. It is crucial to this way of thinking through figuration in the sense of tracking cultural resonances across the novels to pay attention to the affective register in which they operate. As I have suggested elsewhere (Wearing 2011, 2013), the ‘tone’ and affective regime of cultural production is a crucial element of its signifying practice and its social reach (Ngai 2007). The contemporary figuration of people with dementia tends to generate an affective register dominated by fear, aversion, and pity rather than empathy, recognition, or pleasure (King 2013; Basting 2009) although, as I shall suggest below, it is important not to overstate these orientations.

F ICTIONAL

RELATIONS : F RANZEN AND H OMES Franzen and Homes write about contemporary US-culture with a particular fascination for urban and suburban mores. Both have written novels which reflect on and are organized around the vicissitudes of familial relations, their deconstruction (through estrangement, geography, illness, death, violence), and (sometimes) reconstruction. For both writers, the nuclear family is the site of significant emotional trauma and psychological as well as literal violence. As Franzen asks when writing about Christina Stead’s novel, The Man Who Loved Children: Isn’t the nuclear family, at least the psychologically violent side of it, the thing we’re all trying to escape from – the infernal reactor into which, when outright escape is not an option – we’ve learned to stick our new gadgetry and entertainments and after school activities like graphite rods, to cool the reaction down? (2013: 56)

This view of the literally nuclear family as uniquely toxic is also a feature of Homes’ novels and short stories, although not unequivocally.1 Stylistically, there are also resemblances. Literary critics have linked them as examples of “[l]iterary postmodern realism” (Holland 2012), “post postmodern realism” (McLaughlin 2008: 58), or dystopian “[s]uburban novelists” (Knapp 2011). These designations perhaps structure our responses to the novels in ways which tend to reinforce the allegorical or symbolic

1

The novels, Music for Torching, In a Country of Mothers, and The End of Alice as well as many of the short stories in both The Safety of Objects and Things You Should Know are primarily concerned with the violence, deceit, deception, and hatred pervading suburban families. Even the more optimistic Jack, where the affective register is more benign, contains these elements.

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understandings of dementia that confine it to “catastrophe and trauma” (ibid.: 501) which, I suggest below, fails to fully accommodate the psychological, affective, and social reach of accounts of dementia the novels offer. Nonetheless, the stylistic choices of the novels are important. Both write ‘post postmodern’ fiction which utilizes a kind of ‘knowing’ realism (McLaughlin 2008). The writers offer a world we recognize. It is not formally experimental, but it is a world understood as materialized through language (figuration). It is writing which offers the possibility of ‘thinking otherwise’ and thus of change because – rather than in spite – of this commitment to creating reflexive worlds. Robert McLaughlin argues that this literary critique of the status quo is crucial: Literature has been and continues to be a way of critiquing our social world, of finding ways to be human in it, and of truly connecting to others. [...] Postpostmodernism seeks not to reify the cynicism, disconnect, the atomized privacy of our society nor to escape or mask it [...] but, by engaging the language-based nature of its operations, to make us newly aware of the reality that has been made for us and to remind us […] that other realities are possible. (ibid.: 67)

Franzen and Homes then are linked by critics through their formal realism combined with the maintenance of a postmodern (or post postmodern) suburban sensibility. This sensibility is manifest in offering something akin to a hyper-realist mode, a realism that has all the knowingness of the postmodern concern with “language, narrative and the processes of representation” (ibid.). This postmodern or poststructuralist ‘sensibility’ is suggestive in that one of the key concerns of postmodern and poststructuralist thought has been the dismantling of ideas of an autonomous, stable ‘self.’ Within poststructuralism, the ‘self’ is understood as produced (materialized) through discourse and language and is understood as mutable and relational. These twin concerns – with language as generative or ‘world making’ and the self as mutable and provisional – finds fertile ground in the narrative and fictional concerns with the figuration of dementia. In most accounts of dementia, both language and ‘the self’ are perceived to be at risk. An illustration of this can be seen early in The Corrections where Alfred Lambert is struggling to hold on to a thread of thought, to remember what he is doing and how the sentence that he has started with the words ‘I am’ should finish. Indeed, for Alfred, “every sentence” threatens to become an adventure in the woods whose darkness was the darkness of starlings blotting out the sunset or black ants storming a dead opossum, a darkness that didn’t just exist

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but actively consumed the bearings that he’d sensibly established for himself, lest he be lost [...] trapped in the space between one word and the next. (Franzen 2010: 12)

This is a powerful invocation of confusion and the attempt to stave it off, to try to keep the ‘darkness’ of the loss of language from overtaking ‘himself.’ This unwilled loss of language with its concomitant fears around the loss of self is a recurring motif for both writers in their figuration of dementia but with varying degrees of trauma attached to the condition. Both May We Be Forgiven and The Corrections explore the subjective and psychological impact of dementia and the web of vulnerabilities and responsibilities that it engenders. They thus raise similar dilemmas around the questions of dependency, care, and relationality that have been debated by feminist ethicists and disability theorists (cf. Kittay and Feder 2002; Nussbaum 2002; Shidrick 2001; Tronto 1993; Wendell 1996, 2001). They also address difficult questions about how power is exerted within ‘caring’ paradigms. Read together, these novels offer an account of dementia that stresses multiple meanings rather than simply viewing dementia as a symbol for general cultural malaise.

P OST - PATRIARCHAL

CORRECTIONS ? The cries of a government that could no longer govern. (Franzen 2010a: 7)

The Corrections is the story of the Lambert family, Enid and Alfred, Midwestern, suburban, and aging, and their three adult children Gary, Chip, and Denise. The novel follows these characters through a three month period between autumn and New Year during which time Enid attempts to organize a last family Christmas at their Midwestern, suburban home against the background of Alfred’s declining mental and physical health. Alfred is suffering from Parkinson’s disease and has dementia. While the novel begins and ends in St. Jude, the narrative is structured through the utilization of the multiple perspectives of the family members and includes the reminiscence and memories of the family’s past as well as its present. In considering how dementia figures in this story of a suburban family’s ordinary pathologies and guerrilla warfare, I concentrate on the ways that gender politics and sexuality are invoked to explore the decline of the patriarch in Franzen’s novel. It has been suggested, as the preceding section

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described, that Franzen’s novel be read primarily as an allegory of a broader sense of cultural catastrophe. For example, in Suzanne Rohr’s reading, dementia operates on both a narrative and allegorical or metaphorical level as a ‘symptom’ of a more general decline. The story of Alfred is also the story of millennial US-culture (understood as requiring economic and cultural ‘correction’). Rohr suggests the very form and style of the novel mirrors this preoccupation where the patriarchal figure in decline corresponds to a wider cultural, economic, or critical theoretical decline or lack (2004: 98-99). This is in many ways a compelling reading of the novel and one with which I have sympathy. It stresses, by implication, a certain level of conservatism (which McLaughlin’s reading also suggests), particularly around the related questions of gender, family roles, and the possibility of meaning within this newly fraught territory. However, I suggest this ‘allegorical’ mode of reading tends to downplay the specificity of the ‘disorientation’ and ‘disturbing reality’ to which Alfred is subject, even as it describes them: Alfred’s terrible illness […] functions as the metronome establishing the slow rhythm of disorientation that haunts all the members of the Lambert family. Their feeling of profound disorientation is, however, also paradigmatic of the general climate of the 1990s. […] Alfred is preoccupied with the lower part of his body and with the bodily functions over which he no longer has control. He is obsessed with sexuality and feces. He is increasingly portrayed naked from the waist down, fighting with adult diapers and a “speaking turd” […] in an absurd, partly sad and partly hilarious Pynchon like scene, the turd, a genuine anarchist, confronts Alfred with his “anal retentive type personality”. […] [T]he margins of reality increasingly blur, until all collapses into a twilight zone. (ibid.: 99)

I have quoted this reading at length because it highlights some of the key ways in which parental dementia is ‘figured’ in the novel as a loss of explicitly bodily and sexual control. It also is suggestive in thinking about how the conventional reading of dementia signals decline and degeneration and perhaps alienates the reader from the experience of ‘absurdity.’ In other words, the stress on the metaphorical links Alfred’s plight to a wider cultural malaise but renders Alfred himself ‘absurd,’ ‘sad,’ and ‘hilarious.’ Such a reading ignores how the novel simultaneously, through its access to Alfred’s interior life, grants the reader some (fairly distressing) insight into the experience of the condition itself. Other critics have also read Alfred’s disease as primarily allegorical wherein Alfred’s deteriorating mind stands in for the social body (Hensley 2012: 278). I want to suggest that it is pos-

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sible to reconcile an allegorical reading with one that is attentive to the ways in which the novel offers a continuum rather than a stark contrast between dementia and other, less dramatic experiences of ‘dislocation.’ It thereby produces an account of selfhood which is less reliant on the binary distinctions healthy/unhealthy and mad/sane which disability activists and feminist philosophers have critiqued (cf. Wendell 1996; Fine and Glendinning 2005; Hines 2007). A key moment where I suggest such a continuum plays out occurs in the final third of the novel, where Gary, the eldest child, has arrived for Christmas and is (somewhat grudgingly) helping his distraught father deal with his night-time incontinence and confusion. In the ongoing war between Alfred and his eldest son, this moment in the novel testifies to the largely unmourned loss of patriarchal authority: Gary himself was infected, there in the middle of the night, by his father’s disease. As the two of them collaborated on the problem of the diaper […], Gary, too, had a sensation of things dissolving around him, of a night that consisted of creepings and shiftings and metamorphoses. […] [H]e sensed a large population of phantoms that he could glimpse only dimly. […] It was hard to believe that he’d been fighting this man, taking him seriously as an adversary, three months ago. (Franzen 2010a: 501)

It is possible to read this scene ‘straight’ in relation to the figuration of dementia, rather than as allegorical or metaphorical, engendering a rather different set of cultural concerns. The reading of Alfred’s discussions with his feces on the whole tends towards a dehumanizing of Alfred, creating him as an object of pity and laughter (objectification of rather than identification with), but this exchange offers something different. Here, Gary’s recognition of the continuum between himself and his father occurs at the point where the tyrannical patriarchal authority that Alfred has intermittently exerted is, finally, dissolved. This equivocal end of hostilities can be read as the novel’s gesture toward recognizing elements of the subjective experience of dementia as consistent with everyday aspects of selfhood (and vice versa). Thus Gary’s psychological mirroring of his father’s confusion links rather than separates the protagonists. This is a crucial step in recognizing that people with dementia are not wholly ‘other’ and therefore cannot be erased from conceptualizations of personhood or humanity (Nussbaum 2002). Other critics have been alert to the questions around subjectivity that the story of Alfred Lambert tells and to what it might reveal. Moreira and

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Palladino (2005) use The Corrections to illustrate the competing paradigms currently at large within biomedicine in general and in conceptualizations of optimum treatment protocols for Parkinson’s disease in particular. In their reading, all the characters in the novel, other than Alfred, conform to one or other of two world-views on ‘the self,’ which in turn dictates how the characters respond to Alfred and his condition. Their analysis contrasts the concept of ‘self’ produced via the regimes of ‘truth’ (associated with the work of Michel Foucault and Giorgio Agamben) and ‘hope’ (associated with the work of Paul Rabinow and Nikolas Rose). ‘Truth’ here represents the ‘biopolitical’ insight which stresses the uses politics makes of the body, either by bringing it to political subjectivity through recognition (Foucault 1990: 18, 1991: 43) or by refusing such recognition and rendering it ‘bare life’: “a legally unnamable and unclassifiable being” (Agamben 2005: 3). ‘Hope’ is associated here with the neoliberal emphasis on capital which engenders self-fashioning and responsibility, an ethic of ‘life itself’ (Rose 2001). Both conceptions are reflected in the research and medical administration of Parkinson’s disease. Those ‘actors’ associated with ‘hope’ emphasize the possibility and benefits of ‘cure’ while those associated with ‘truth’ will be more circumspect about the risks of new therapies. Moreira and Palladino conclude that Franzen, in his depiction of Alfred’s enigmatic ‘refusal’ to engage with his illness in the proscribed ways, conforms to neither of these regimes of subjectivity. The novel, they argue, stages a refusal to conform to the injunction to ‘get well.’ This is unintelligible to both the biomedical and cultural theoretical industries because it falls ‘between truth and hope.’ In this reading, Alfred offers the reader a unique insight into a space outside of conventionally understood ‘selfhood.’ Moreira and Palladino suggest that it is the literary artefact that can “[g]ive voice to an experience of transcendence that is beyond words, space and time. In this way, we are able to glimpse both the experience of dislocation and selflessness, and its obscurity” (2005: 75). They go on to suggest, however, that what we actually uncover is only the limits of ‘our’ (i.e. the reader but also the wider constituency of those who do not have dementia) understanding‚ “the emptiness of our own sight” and “the precariousness of our own selves” (ibid.: 76). Interestingly, despite the very different orientation of this essay to the literary critics thus far cited, this is still a reading which takes the ‘figure’ as allegorical – in this case in relation to modes of subjectivity. So, like Gary, the reader is led to simultaneously

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experience elements of the condition but also recognize the limits to understanding it. This reading, whilst compelling, underplays the ways in which the novel engages with such dislocations, not merely through Alfred but via other family members’ relations to him. In purely narrative terms, the novel opens and effectively closes with Alfred. However, the novel’s structure offers a multiperspectival account of the Lambert family and their different responses to his illness. Alfred’s wife Enid’s response can be read as borderline sadism, which rather neatly encapsulates some of the debates over the ethics of care and its relation to power that feminists have been interested in. However, dementia reconfigures familial relations in ways that are only ambiguously ‘post-patriarchal.’ Denise (the middle child) is unable to face her father’s loss of dignity and her response produces a ‘return’ (or a regression) of orientation away from him and toward her mother. Gary reveals the inadequacies of his emotional responsiveness through ineffective bullying and the youngest child, Chip, finds a partial redemption through care. These responses tell us everything we need to know about the moral compass of the family members and in this way the novel stages its familial moral and ethical center around this parental figure in decline. I want to look now in a little more detail at these responses to think through the affective dynamics of the novel’s treatment of dementia: Gary’s overidentification, Denise’s dis-identification, sexual equivocation, and maternal reorientation, Chip’s ‘redemption’ and rehabilitation through care and, finally, Enid’s sadistic punishment of the enfeebled Alfred. As I have already suggested, for Gary, the encounter with his father’s illness provokes a complex set of equivocal affective resonances. Thus where his father is disoriented the night Gary echoes, in ameliorated form, a similar disorientation. Nonetheless, his overall reaction is to attempt to exert patriarchal control over his parents and siblings, as his father had done. This is an authority for which he is demonstrably unqualified, given his failure to intervene in his own son’s Christmas plans. Both his callousness and his lack of any grounds for authority are made clear in the final stages of the novel. On Christmas morning, he abruptly leaves the house after hectoring his mother over her suggestions for Alfred’s future care. His dramatic exit is, rightly, interpreted by Chip as weakness rather than strength. Leaving his father (whose fall, precipitated by Gary’s outburst, has overturned the breakfast table) “lying on his side amid the ruins like a

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wounded gladiator, a fallen horse” (Franzen 2010a: 627). Gary’s selfserving anger is revealed to his brother, as, in fact, merely a brutality provoked by fear: Gary was in his most rational mode, his words had a formal hollowness, his eyes were evasive as he put on his coat […], because he was afraid. Chip could see it clearly now, behind the cold front of Gary’s wordless departure. His brother was afraid. (ibid.: 629)

Chip’s own narrative trajectory is quite different. From being a cynical, disgraced academic and would-be international criminal he becomes Alfred’s only source of solace and in turn finds a form of redemption through providing ‘care’ and advocacy for his father in the nursing home where he finally dies. Chip’s response to his father’s limitations is one guided by empathy rather than fear and an assumption of blunt (and ineffectual) patriarchal authority as characterized by Gary’s dominant response to his father’s illness. The youngest sibling, Denise’s, reaction is equally affect laden but framed through a narrative of shame and prohibition. In this way, Franzen gets to the heart of what psychoanalytic critics would term the ‘family romance.’ Indeed, he seems to positively endorse a psychoanalytic reading of his novel’s father/daughter relationship.2 Denise’s reaction to witnessing her father’s cognitive and coordination difficulties in her brother’s apartment (difficulties which we, as readers, have already understood from Alfred’s perspective) elicits one of the novel’s most self-consciously ‘post postmodern’ stylistic effects. Denise’s response to her father’s ‘madness’ causes an entire ‘reboot’ of her personality, likened here to a software program’s reconfiguration: She had a still-working old self, a Version 3.2 or a Version 4.0, that deplored the deplorable in Enid and loved the lovable in Alfred. Not until she was at the pier and her mother kissed her and a quite different Denise, a Version 5.0, nearly put her tongue in the pretty old woman’s mouth, nearly ran her hands down Enid’s hips and thighs, nearly caved in and promised to come at Christmas for as long as Enid wanted, did the extent of the correction she was undergoing reveal itself. […] Her father at the lunch table has looked insane. And if he was losing his mind, it was possible that Enid had not been exaggerating her difficulties with him, […] 2

Franzen’s novels invite psychoanalytic readings both because of his clear allusions to sexuality in the child/parent relation and also in his references to his immersion in Freud and his horrified realization of the unconscious and its malevolent ability to erupt into barely understood impulse and behavior (Franzen 2014: 128-129).

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possible that Enid wasn’t entirely the embarrassing nag and pestilence that Denise for twenty years had made her out to be, possible that Alfred’s problems went deeper than having the wrong wife, possible that Enid’s problems did not go much deeper than having the wrong husband. […] She could not remember a time when she had loved her mother. (ibid.: 490-491)

A ‘vulgar’ psychoanalytic reading of this passage might take note of how Denise’s flash of erotic interest in her mother bespeaks her re-inflected sexuality in relation to women (she is at this point embarking on an affair with her boss’ wife). However, for my purposes more importantly, this reorientation accompanies her realization of her father’s ‘decline’ – so here, crudely, desire for the mother emerges from dis-identification with the father; a dis-identification which is provoked by his frailty. This realization seems to psychically cast Denise ‘back’ into the vagaries of the oedipal scenario in relation to her parents. Identification and desire here are fused – she ‘wants the mother’ at the point that she identifies, for the first time, with her.3 This new configuration of sexuality (contra conventional, heterosexualized gender) is achieved at the point where she can no longer identify ‘with’ the father – this contradicts perhaps the psychoanalytic reading that would cast identification and desire as opposite. However, feminist psychoanalytic theorist Jessica Benjamin points to the many manifestations of the interrelation of identificatory and object love and further to the ways that understanding these affords the insight that “[t]he reality of sexual differences is far more multifarious than the binary logic of mutual exclusivity allows” (1998: 74). Leaving the technicalities of psychoanalytic debate aside, what I want to stress here is that this new realization of likeness (figured as a flash of desire for) is predicated on the ‘insanity’ of the father. The decline of the old man creates a crisis of self which throws Denise back to the desires and identifications of early childhood figuring a loss and remaking of (gendered and sexed) self through the loss of the idealized parent. If, as Judith Butler (1997) argues, unmourned loss structures our psychic lives and gendered identifications, it is perhaps unsurprising that the psyche responds to the perceived loss of what Freud might call in Denise’s case the ‘ego ideal’ of her father. Once again, here, the novel highlights the refracted mirroring of Alfred’s difficulties with time and space

3

For a fuller elaboration of the ramifications of the relation between desire and identification in psychoanalytic theory and its role in formations of both sexuality and gender see Judith Butler (1997) and Jessica Benjamin (1998).

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and their assaults on the ‘self’ in his child’s experience of mutability and precarity. Denise’s increasing alienation from intimacy with her father is underlined through the revelation of his secret knowledge of her ‘betrayal’ of him many years earlier. It is revealed that she had an affair with a colleague of his that had financial as well as emotional costs. These humiliations are compounded by Denise’s unwilling witnessing of her father’s increasing inability to control his bodily functions, culminating in his wetting the bed while she attempts to help with his exercises, and her interruption as he tries (unsuccessfully) to insert an enema. The text makes it clear that the mutual regard of father and daughter is threatened by the reality of his deteriorating physical and mental condition, drenching both parties in shame: She understood, better than she would have liked to, what a disaster it had been for him to wet the bed in front of her. Lying on a stain of fast cooling urine was not the way he wished to be with her. They only had one good way of being together, and it was not going to work much longer. (Franzen 2010a: 605)

Franzen’s writing on the subject of dementia is not limited to the account of the Lambert family. In his memoir The Discomfort Zone and in essays, particularly “My Father’s Brain,” he discusses Alzheimer’s disease and the philosophical, ethical, and existential questions that the illness raises in relation to the self and the parent-child relation. Of particular resonance in relation to the above passage from The Corrections is this account of his father: My father was an intensely private person, and privacy for him had the connotation of keeping the shameful content of one’s interior life out of public sight. Could there have been a worse disease for him than Alzheimer’s? […] [I]t worked to dissolve the personal connections that had saved him from the worst of his depressive isolation [and] it robbed him of the sheathing of adulthood, the means to hide the child inside him. (Franzen 2010b: 24)

This is not a claim for the novel to be understood as somehow ‘truer’ because details can be traced back to its author’s experience. However, in terms of the figuration of parental dementia, it enables us to look across the fictional and non-fictional representations to explore what it means to Franzen to ‘popularize’ dementia in the sense of making the effects of the condition the central organizing feature of his novel, a novel he describes as originally intended to be ‘a big social novel’ (Franzen 2013: 134). In this context, then, Denise’s response to her father’s dementia is a reconfigura-

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tion of the parent-child relation and indeed the subject herself which offers an account of the psychic repercussions of the shifts which dementia engenders, a question of social as well as psychological significance. Franzen’s attempts to render for the reader an account of the experience of dementia from the perspective of the person with the condition, as opposed to from the perspective of those around them, is bound to falter. The close of the novel tracks this faltering as we ‘lose’ Alfred’s own narration or perspective on the events which overtake him in a rapid escalation following the ‘last Christmas.’ The novel ends in a positive tour de force of abject horror with Alfred’s admittance to a nursing home where he unleashes his racist bigotry4 on the nurses and repeatedly attempts suicide. It is possible to read this final section of the novel as a problematic distancing from the ‘subject’ of Alfred which colludes in making him an object. However, I am inclined to an opposite reading, which highlights instead the ways in which the process of objectification is in fact foregrounded through the increasingly harrowing picture of the ways that Alfred is ‘corrected’ by his wife and the sadistic relish with which she ‘cares’ for him. This is couched in terms of her escape from patriarchal bondage, which makes the following passage even more unsettling: She’d felt Wrong all her life and now she had a chance to tell him how Wrong he was. Even as she was loosening up and becoming less critical in other areas of life, she remained strictly vigilant at the Deepmire Home. (Franzen 2010a: 652)

There follows a catalogue of Alfred’s ‘Wrongs,’ starting with the dribbling of his ice cream down his chin and ending in his repeated suicide attempts He was wrong to attempt to hang himself with bedsheets […] wrong to hurl himself against a window […] wrong try to slash his wrist with a dinner fork. Altogether he was wrong about so many things that she […] never failed to visit him. She had to tell him […] how wrong he’d been and how right she’d been. (ibid.: 652-3)

In this context, Franzen’s comments seem relevant that for his own mother, during his father’s illness, “it was also an opportunity to grow slowly into an autonomy she’s never been allowed: to settle some very old scores” (ibid.: 25). Both these passages are particularly interesting in relation to the feminist literature on the ethic of care. This literature has drawn attention to 4

For an account of the racialized configuration of dependency and the ‘ethic of care’ which draws attention to the ‘shadow work’ disproportionately performed by black care workers and its ‘work’ of reproducing white supremacy, see Spelman (2002).

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a ‘tension’ between the recognition of mutual reliance and vulnerability which requires a feminist ‘ethic of care’ and the needs of ‘justice’ and autonomy for care workers. In addition, it has debated the possibilities for care itself to be recognized as a complex relation of power (Koehn 1998; Wendell 1996; Tronto 1993). Feder and Kittay’s 2002 collection on the subject of dependency and care asks: [H]ow can we deal justly with the demands of dependencies that constitute inevitable facts of human existence, so that we avoid domination and subordination with respect to care and dependency? How, that is, can the consequences of human dependency be equally borne by all, so that some do not experience themselves as intolerably dependent in order for others to experience themselves as fully independent? (2002: 3)

Similar questions are provoked in The Corrections where the power dynamics of care and dependency are revealed when Enid’s increasing autonomy enables her to revenge herself on Alfred as he loses the ability to resist. The novel does not resolve such ethical conundrums and the ‘trouble’ they raise in terms of considering the complexities of power in the concept of ‘care,’ dependency, and autonomy for those who require more assistance than the able bodied ‘norm.’ Alfred does, however, finally manage to assert a form of negative agency achieving an ending he has been struggling with throughout the novel, his own life. He stops eating. “The one thing he never forgot was how to refuse. All of her corrections had been for naught” (Franzen 2010a: 653). For some readers, this constitutes a negation of Alfred at the end of the novel. Exacerbated by the way in which the reader is distanced from his experience, it can be read as a familiar rendering of dementia in which dignity and humanity are diminished and through which Alfred is rendered body rather than person. Whilst this is a view with which I have some sympathy, I am also convinced by the novel’s attempts to describe the processes of dis-identification drawing the reader’s attention to them and highlighting their ethical dimensions. Franzen writes in “My Father’s Brain” that “[s]enility is not merely an erasure of meaning but a source of meaning” (2010b: 25). In ‘figuring’ Alfred’s loss of autonomy and cataloguing the various ways in which his immediate family experiences related practical and affective dissonances, a variety of possible meanings provoked by the condition are produced. The Corrections thus provides a commentary on the complex social and ethical questions raised by dementia.

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POPULARIZING DEMENTIA AND RECONFIGURING THE DOMESTIC SPHERE: QUEER CARE IN MAY WE BE FORGIVEN She may not be the woman you remember, but whoever she is now – she’s doing very well. (Homes 2013a: 365)

I have suggested that The Corrections offers a figuration of the parent with dementia which stresses a continuum between dementia and other shifts in the experience of subjectivity as beset with anxiety, dislocation, and changing affective ties. At the same time, it gives an account of the ways in which people with dementia are subject to the emotional limitations and aggressive projections of others. Alfred’s dementia then is figured in the novel in terms of an affective web which deconstructs and reconstructs the family. A.M. Homes’ novel May We Be Forgiven does not frame its story around the parent with dementia. Instead, as in much of Homes’ fiction, parents with dementia seem at first to be merely incidental figures. Nonetheless, I want to suggest here that these apparently incidental figures are vital to the novel’s reimagining of domestic space, time, and relations. May We Be Forgiven, in keeping with much of Homes’ fiction, reveals the brutality and violence at the heart of the suburban heterosexual family unit. The novel, which begins and ends around a suburban thanksgiving dinner table, explores the aftermath of a brutal killing. Jane is attacked by her husband, George, when he finds her in bed with his brother Harold (the narrator), a Nixon-obsessed historian, whose struggle to find meaning and forgiveness in the aftermath of the killing structures the novel. In the process, the hapless protagonist has a series of encounters with the surreal inhabitants of suburbia. These include electronically chipped children arranging kidnappings over the internet, a frustrated and over-medicated ‘soccer mum,’ and assorted waifs and strays populating the aisles of supermarkets and malls, in care homes and privatized quasi-military/quasimedical correctional facilities. Amongst these encounters, the narrator visits his own mother, who wears an orange wristband with ‘demented’ written on it but, during the course of the novel, appears to forget why she has been bedridden for years and embarks on an entirely new life in the nursing home. Another disoriented young woman, caring for her own elderly and forgetful parents, abandons them to the care of the protagonist.

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Homes’ fiction has many similar, seemingly incidental figures whose forgetfulness is figured as neither tragic for them or necessarily precipitating a crisis of ‘self’ or the catalyst for a vortex of emotional restructurings as in The Corrections. Rather, the forgetfulness of the older characters in Homes’ fiction often seems to spare them the necessity to confront the more alienating and brutal aspects of the present that her fiction explores. This preoccupation with the experiences of forgetfulness both normalizes the condition and uses it to effect an ethical trajectory for the central protagonists of the novels and short stories. These characters are rendered without sentimentality or conventional horror or aversion and often humorously. Thus, Homes’ wider account of the precarity of the present, her ‘post postmodern’ preoccupations with lost or alienated characters reconnecting to others is frequently figured through dementia. In line with the interests of this volume, ‘popularizing’ dementia in Homes’ work has at least two aspects to it. Firstly, she demonstrates the ways in which, for some parents, the relinquishing of responsibility that forgetfulness can accomplish is highly pleasurable. To this extent, then, the novelist makes dementia less the terrifying nadir of self and more an opportunity to ‘play.’ The playfulness of dementia is repeatedly stressed, contrasting sharply with the experience of carers and relatives on whom responsibility then falls. (This is gendered, so for the mothers, the relinquishment of responsibility is figured differently from that of the fathers.) In addition, the novels and short stories attest to the ubiquity of the condition and its variations. There is a patient at the emergency room and a doctor’s wife with Alzheimer’s in This Book Will Save Your Life and the expresident of the United States in the short story “The former first lady and the Football Hero,” also with Alzheimer’s. This proliferation serves to normalize a condition that carries considerable stigma and to understand it as part of the everyday texture and fabric of the contemporary United States, operating figuratively to tell us something about the social world that the texts both describe and, in some fairly fundamental ways, challenge. These characters are not ‘Wrong’, as Enid insists Alfred is, but they do force a reappraisal of questions of autonomy and relationality, familial responsibility, and community and social care capacity. In May We Be Forgiven, Homes offers two sets of parental figures with dementia and these figures are utilized to raise questions over the ethics of care and responsibility, the nature of community and paucity of accounts of

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the self which would stress individual agency and autonomy at the expense of acknowledgement of relationality and reciprocity. In providing an account of these dilemmas, the novel can be read as continuing Homes’ interest in and commitment to a project for fiction which suggest that fiction has an ethical relation to the world, that books may indeed ‘save your life’ as the title of her 2006 novel would have it. In a discussion of This Book will Save your Life and the earlier Music for Torching, Holland suggests that Homes’ fiction reconnects readers with the narratives that explore the trauma and horror of contemporary social formations through an unsparing dissection of the traumas of family. She argues: Family is the point for Homes, and the house is the site of trauma against which we must all defend ourselves, even while we are living inside it. And the vehicle that can move us from threat to safety, or at least to the comfort of understanding, is narrative. (2012: 220)

In Holland’s account, Homes’ version of America is “an estranging culture in which narcissism, consumerism, and media images have replaced socially directed behaviors and qualities like responsibility and belief” (ibid.: 216). Homes mirrors these estrangements and fragmentations in her postmodern stylistics of episodic, non-linear narrative structure. However, in place of postmodern distance, Homes’ writing insists on “an ethics that invites measurement […]. Homes’ fiction paints a postmodern landscape of broken selves and broken families and then sets about resolutely to fix it” (ibid.). Holland concludes that Homes presents [a] realist desire to make language meaningful, expressed in the cultural and stylistic context of the postmodern […] defining a fully postmodern, […] contemporary framework – both narratively and stylistically – in which the human and the human family must be reimagined. (ibid.)

I want to suggest here that this ‘postmodern landscape’ is one in which the figuration of parents with dementia plays an important part. It is also one in which ‘family’ itself, in keeping with shifts that sociologists have tracked, undergoes significant recalibration. The ‘postmodern’ reconfiguration of intimacy along lines of chosen kinship patterns (even those rendered by chance) over traditional blood ties points to caring practices which transform, or ‘queer,’ the family and the gendered dynamics of care (cf. Hines 2007; Cooper 2007; Roseneil and Budgeon 2004). May We Be Forgiven stresses the plausible pleasures of forgetfulness, the characters with dementia are confused, certainly, but also witty and wise, and are both cared for

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and caring outside of traditional ‘family’ groups. The less enchanting aspects of aging and forgetfulness are also represented. Many characters are fearful and anxious over what they may forgo; the difficulties of maintaining dignity whilst wearing a diaper are evident. However, in the context of Homes’ broader landscape of alienation, domestic violence, missing and murdered women, ‘home alone’ or overmedicated children, compulsive liars and so on, such difficulties somewhat lose their status as exceptional tragedy, even if they do not, quite, make it to farce. This is not to underplay the bleakness of the figuration that includes, for example, only dubiously consensual sex and abandonment, but rather to emphasize how such bleakness is not explicated as particular to dementia. Instead, dementia is part of a bleak (but not universally so) landscape and as such it encompasses an affective dynamic sensitive to both pain and pleasure. Central to the questions raised in the novel over parental figures with dementia are the complexities surrounding reversals of caring roles. This is made explicit through the young woman the narrator meets in the supermarket, Amanda, who is not coping well with the responsibility of living with and caring for her parents. In a telling episode, the narrator and Amanda attempt to sleep together in the garden of the parental home. In a reversal of the children being checked on by the parents, Amanda keeps thinking something is wrong, something is happening, and goes back inside every ten or fifteen minutes, worried they will fall and break their hips, there will be carbon monoxide buildup, a gas leak will cause the house to explode, they will wake up frightened of the dark, they will want a glass of water, a sip of scotch a little nightcap. (Homes 2013a: 343)

Amanda eventually abandons her parents, Madeline and Cy, to Harold’s dubious care and they form part of the reconstructed family grouping which ends the novel. This reconstructed family which emerges in the wake of an act of pointless violence, the death of Jane, is marked not by blood ties but by different and contingent (if not actually ‘chosen’) forms of kinship. And here, again, although I described Amanda’s parent’s as ‘abandoned’ by her, in fact this fails to describe the ambiguous agency that they exhibit when, after arriving at Harold’s house for dinner, they calmly take up residence, apparently under the illusion that they are in a hotel although they “fear our luggage has not yet arrived” (ibid.: 401). Once Amanda has relinquished her role in their care, it becomes clearer how the role that she has taken on has in fact infantilized her parents in ways that they have colluded with for her rather than their own benefit. Their own ability and desire to ‘care’

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rather than being cared for is manifest as they ‘adopt’ a pair of South African dolls that have been acquired during the course of the novel. With the real children away at summer camp, Madeleine takes up a doll and starts to nurse it. Harold’s response recognizes Madeleine’s desire: “She looks so calm, so pleased with herself, that I do nothing more than drape a blanket from the sofa over her” (ibid.: 438). Cy, too, “walks around carrying the baby under his arm – sideways like a football. He takes it pretty much everywhere, calling it his brown brother and occasionally his wife” (ibid.: 440). The need to care as well as being cared for and the variety of means (including prosthetic) by which such care might be achieved is stressed in this novel’s refusal to assume that responsibility for care should be restricted to either biological family or the cognitively ‘able.’ Again, these moments which stress the capacity for care giving as well as receiving resonate with the explorations of theorists and activists concerned with the politics and ethics of disability and care (Kittay 2002; Hines 2007; Wendell 1996). The members of the reconstituted ‘family’ that have survived the various accidents, malicious acts of violence, or abandonments are testimony to the ambiguous plea (or “incantation” (Homes 2013a: 480)) for ‘forgiveness’ that the novel explores. Neither more nor less accountable than the rest of the variously flawed characters in this “postmodern morality play” (Holland 2012: 219), the characters with dementia are rendered fallible, forgetful but also fully present. As Ashley notes of her grandmother who has forgotten that she was bedridden and so goes from “crawling like a roach” to swimming and dancing – the novel insists that these frail people should not be “like […] one of those fragile dolls in a box that you can just kind of look at” (Homes 2013a: 313).

CONCLUSIONS: NARRATIVE ATTACHMENTS TO DEMENTIA Dementia is operating in significant but also complex and diverse ways in contemporary literary culture. The novels discussed here are clearly separated by their very different imaginative portrayal of the experience of the condition. Nonetheless, they share an interest, which my reading foregrounds, in understanding dementia as a defining condition of the present, that is, as a condition which is both part of social reality and attached to fundamental moral and ethical questions of care, dignity, and autonomy. This manifests itself in the ways the novels ambiguously attach reader identifications to the figures of characters with dementia, the parallels they

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draw with other characters, and the ways they situate dementia within a contemporary landscape which has both dystopian and utopian elements. The writers are then ‘using’ dementia as an ‘alibi’ for a more general consideration of the US-culture out of which they emerge, but at the same time are attentive to the specificity and challenge of the condition, a condition which provokes a set of philosophical reflections on the nature of selfhood, relationality, and care. That these questions are asked through family narratives points to an answer to Franzen’s question: ‘Why torment ourselves with books?’ with which I began this piece. The answer seems to me to lie in the ways that novels can ‘popularize’ dementia including robbing it of its conventional mantle of fear and shame. Both these authors go some way toward achieving this, although neither shy away from the challenges and fears associated with dementia. Franzen writes about his experience of having a parent with dementia in ways that are salient here for thinking about what fictional accounts can also do: Although I’d always prized my intelligence and sanity and self-consciousness, I found that watching my father lose all three made me less afraid of losing them myself. I became a little less afraid in general. A bad door opened, and I found I was able to walk through it. (2010b: 25)

Both writers render dementia as part of the everyday landscape of subjectivity, a condition which – although it has a very particular challenges and dynamics – is nonetheless recognizable as continuous with ‘personhood,’ continuous that is with elements of subjectivity that those who do not have dementia can recognize, and which are meaningful. As Franzen writes of his father in this context: “I can’t stop looking for meaning in the two years that followed his loss of his supposed ‘self’ and I can’t help finding it” (ibid.: 30). Further, in highlighting the ways that dementia might reconfigure caring relationships and kinship, new social possibilities for imagining care are opened up. Parental figures with dementia are, then, particularly significant for contesting existing paradigms of subjectivity, ‘health,’ and ‘family’ but also more subtly allowing the ‘family romance’ to take a queer turn potentially reconstituting relations of care and responsibility.

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R EFERENCES Agamben, Giorgio (2005): State of Exception, Chicago: University of Chicago Press. Basting, Anne Davis (2009): Forget Memory: Creating Better Lives for People with Dementia, Baltimore: Johns Hopkins University Press. Beasley, Chris/Bacchi, Carol (2007): “Envisaging a New Politics for an Ethical Future: Beyond Trust, Care and Generosity – Towards an Ethic of ‘Social Flesh.’” In: Feminist Theory 8/3, pp. 279-298. Benjamin, Jessica (1998): Shadow of the Other: Intersubjectivity and Gender in Psychoanalysis, New York: Routledge. Bitenc, Rebecca Anna (2012): “Representations of Dementia in Narrative Fiction.” In: Esther Cohen/Leona Toker/Manuela Consonni/Otniel E. Dorr (eds.), Knowledge and Pain, Amsterdam and New York: Rodopi. Boyle, Geraldine (2008): “Autonomy in Long Term Care: A Need, a Right or a Luxury?” In: Disability and Society 23/4, pp. 299-310. Butler, Judith (1997): The Psychic Life of Power: Theories in Subjection, Stanford: Stanford University Press. --- (2004): Precarious Life, London: Verso. Brossard, Nicole (1998): “Figuration.” In: Feminist Studies 14/1, pp. 116. Casteñada, Claudia (2002): Figurations: Child, Bodies, Worlds, Durham: Duke University Press. Cavarero, Adriana (2002): Stately Bodies: Literature, Philosophy, and the Question of Gender. Trans. by Robert De Lucca/Deanna Shemek, Ann Arbor: University of Michigan Press. Cooper, Davina (2007): “‘Well You Go There to Get Off’: Visiting Feminist Care Ethics through a Women’s Bathhouse.” In: Feminist Theory 8/3, pp. 243-262. Fine, Michael/Glendinning, Caroline (2005): “Dependence, Independence or Interdependence? Revisiting the Concepts of ‘Care’ and ‘Dependency.’” In: Ageing and Society 25, pp. 601-621. Foucault, Michel (1991): Discipline and Punish: The Birth of the Prison, Harmondsworth: Penguin. --- (1990): The History of Sexuality: An Introduction, Harmondsworth: Penguin. Franzen, Jonathan (2010a [2001]): The Corrections, London: Forth Estate. --- (2010b [2002]): How to Be Alone, London: Forth Estate. --- (2013): Farther Away, London: Forth Estate.

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--- (2014 [2006]): The Discomfort Zone, London: Forth Estate. Friedman, Marilyn (2000): “Feminism in Ethics: Conceptions of Autonomy.” In: Miranda Fricker/Jennifer Hornsby (eds.), The Cambridge Companion to Feminism in Philosophy, Cambridge: Cambridge University Press. Gullette, Margaret M. (2004): Aged by Culture, Chicago: University of Chicago Press. Hines, Sally (2007): Transforming Gender: Transgender Practices of Identity, Intimacy and Care, Bristol: Policy Press. Holland, M. (2012): “A Lamb in Wolf’s Clothing: Homes’s Music for Torching and This Book Will Change Your Life.” In: Critique 53/3, pp. 214-237. Homes, A.M. (2006a [1993]): In a Country of Mothers, London: Granta. --- (2006b [1999]): Music for Torching, London: Granta. --- (2007): This Book Will Save your Life, London: Granta. --- (2008): The Mistresses Daughter, London: Granta. --- (2012 [1990]): The Safety of Objects, London: Granta. --- (2013a): May We Be Forgiven, London: Granta. --- (2013b [2002]): Things You Should Know, London: Granta. --- (2013c [1998]): Jack, London: Granta. Hughes, Bill/McKie, Linda/Hopkins, Debra/Watson, Nick (2005): “Love’s Labours Lost? Feminism, the Disabled People’s Movement and an Ethic of Care.” In: Sociology 29/2, pp. 259-275. Hutchinson, Colin (2009): “Jonathan Franzen and the Politics of Disengagement.” In: Critique: Studies in Contemporary Fiction 50/2, pp. 191207. Johnson, Greg (2002): “The Situated Self and Utopian Thinking.” In: Hypatia 17/3, pp. 20-44. Keller, Jean (1997): “Autonomy, Relationality and Feminist Ethics.” In: Hypatia 12/2, pp. 153-164. Kittay, Eva (2002): “Love’s Labor Revisited.” Hypatia 17/3, pp. 237-250. --- /Feder, Ellen (eds.) (2002): The Subject of Care: Feminist Perspectives on Dependency, Lanham: Rowman and Littlefield. --- /Feder, Ellen/Jennings, Bruce/Wasunna, Angela (2005): “Dependency, Difference and the Global Ethic of Longterm Care.” In: Journal of Political Philosophy 13/4, pp. 443-469.

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King, Jeanette (2013): Discourses of Ageing in Fiction and Feminism: The Invisible Woman, Houndsmills: Palgrave Macmillan. Koehn, Daryl (1998): Rethinking Feminist Ethics: Care, Trust and Empathy, London and New York: Routledge. McLaughlin, Robert (2008): “‘Post Postmodern Discontent’: Contemporary Fiction and the Social World.” In: R. M. Berry/Jeffrey R. Di Leo (eds.), Fiction’s Present: Situating Contemporary Narrative Innovation, Albany: SUNY Press, pp. 101-117. Miller, Naomi J. (1996): Changing the Subject: Mary Wroth and Figurations of Gender in Early Modern England, Lexington: University Press of Kentucky. Moreira, Tiago/Palladino, Paolo (2005): “Between Truth and Hope: On Parkinson’s Disease, Neurotransplantation and the Production of the Self.” In: History of the Human Sciences 183, pp. 55-82. Ngai, Sianne (2007): Ugly Feelings, Cambridge and London: Harvard University Press. Nussbaum, Martha (2002): “The Future of Feminist Liberalism.” In: Eva Kittay/Ellen Feder (eds.), The Subject of Care: Feminist Perspectives on Dependency, Lanham: Rowman and Littlefield, pp. 186-214. Proctor, Gillian (2001): “Listening to Older Women with Dementia: Relationships, Voices and Power.” In: Disability and Society 16/3, pp. 361376. Rohr, S. (2004): “The Tyranny of the Probable’ – Crackpot Realism and Jonathan Franzen’s The Corrections.” In: American Studies 49/1, pp. 91-105. Rose, Nikolas (2001): “The Politics of Life Itself.” In: Theory, Culture and Society 18/6, pp. 1-30. Roseneil, Sasha/Budgeon, Shelley (2004): “Cultures of Intimacy and Care Beyond ‘The Family’: Personal Life and Social Change in the Early 21st Century.” In: Current Sociology 52/2, pp. 135-159. Sevenhuijsen, Selma (2003): “The Place of Care: The Relevance of the Feminist Ethic of Care for Social Policy.” In: Feminist Theory 4/2, pp. 179-197. Shakespeare, Tom (1994): “Cultural Representation of Disabled People: Dustbins for Disavowal?” In: Disability and Society 9/3, pp. 283-299. Shildrick, Margrit (2001): “Reappraising Feminist Ethics: Developments and Debates.” In: Feminist Theory 2/2, pp. 233-244.

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Spelman, Elizabeth (2002): “‘Race’ and the Labor of Identity.” In: Eva Kittay/Ellen Feder (eds.), The Subject of Care: Feminist Perspectives on Dependency, Lanham: Rowman and Littlefield, pp. 334-348. Tronto, Joan (1993): Moral Boundaries: A Political Argument for an Ethic of Care, New York and London: Routledge. Tyler, Imogen (2008): “Chav Mum, Chav Scum.” In: Feminist Media Studies 18/1. Wearing, Sadie (2011): “Notes on Some Scandals: the Politics of Shame in Vers le Sud.” In: Rosalind Gill/Christina Scharff (eds.), New Femininities: Postfeminism, Neoliberalism and Identity, Houndsmills: Palgrave Macmillan, pp. 173-187. --- (2013): “Dementia and the Biopolitics of the Biopic: From Iris to The Iron Lady.” In: Dementia 12/3, pp. 315-325. Wendell, Susan (1996): The Rejected Body: Feminist Philosophical Reflections on Disability, New York and London: Routledge. --- (2001): “Unhealthy Disabled: Treating Chronic Illnesses as Disabilities.” In: Hypatia 16/4, pp. 17-33.

Purging the world of the Whore and the horror Gothic and apocalyptic portrayals of dementia in Canadian fiction M ARLENE G OLDMAN

Historian Thomas Cole tells the story of a young Methodist preacher Thomas Cartwright, publicly boasting about having pushed an ‘old lady’ down on the streets of Knox County, Kentucky, in the late 19th century (1992: 84). Cartwright and his followers scorned the elderly because the former took the biblical metaphor of putting off “the old man” and putting on “the new man” (Eph. 4:22-24) literally. As Cartwright’s fellow preacher and leader of the Second Great Awakening, Charles Finney, proclaimed, “[t]he day of earth’s redemption can never come, ’til the traditions of the elders are done away. ... These traditions of the elders are the grand sources of most of the fatal errors of the present day” (qtd. in Cole 1992: 84). As this anecdote indicates, apocalyptic religious discourse was used by citizens of the newly independent United States to inscribe a particular relationship between generations and to both identify and rid the nascent nation of what it deemed the source of its gravest errors. In this essay, I analyze modern and contemporary Canadian literature from the late 1950s to the present to explore the ongoing North American reliance on this apocalyptic discourse which entails effacing the individuality of actual elderly women, conflating the figure of the old woman with what society deems shameful and evil, reveling in the latter’s ‘fall,’ and

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banishing the elderly from the new world to pave the way for its ideal, youthful citizens. My decision to focus on representations of elderly women is based on the fact that in the biblical discourse of apocalypse, particularly in Revelation, on which both Cartwright and my literary narratives draw, evil is embodied and gendered in the infamous Whore of Babylon who must be vanquished before the male elect can enter the New Jerusalem. While the presence of this apocalyptic motif in the US, a nation that explicitly viewed itself as the New Jerusalem, is not entirely unexpected, I argue that a similar mechanism can also be traced in Canadian literature from the mid-20th century to the present. Until recently, there has been relatively little attention paid to the stories our society tells about aging and how they interrelate with medical and political norms and expectations. Literary narratives offer insight into the images, expectations, and experiences that have changed and, in many cases, been forgotten over time. To broaden the view of Alzheimer’s disease and dementia beyond theoretical or biomedical terms, I explore some of the stories Canadian authors have told about age-related dementia – stories that enable us to recognize it as not only a biological process but also a malleable, socially mediated experience. In what follows, I offer close readings of three Canadian novels: Sheila Watson’s The Double Hook (1959), Michael Ignatieff’s Scar Tissue (1993), and David Chariandy’s Soucouyant (2007). All three works rely on portrayals of old age and agerelated dementia to identify and symbolically expel what the contemporary Canadian nation-state deems evil. I have chosen these particular works because they reflect iconic historical moments in Canadian literature.

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LITERARY STUDIES AND DEMENTIA STUDIES INTERSECT The Double Hook portrays a unified, idyllic community as the only healing response to modern alienation, but in the novel, this community can only be formed by the expulsion of an elderly Native woman and her daughter. Given the old lady’s habit of wandering and her odd behavior, I read the novel as implicitly relying on the trope of dementia to convey its theme and to create a scapegoat who can be banished. In Scar Tissue, Michael Ignatieff, a journalist and politician, also explores the theme of alienation associated with modernization, which threatens the loss of the pastoral smalltown existence, alongside the personal and medical threat of dementia.

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Soucouyant forms an integral part of this trilogy because it likewise highlights contemporary anxieties concerning people’s alienation from their roots and attempts to forge a coherent Canadian identity. Whereas Watson’s novel is situated within a mixed-race immigrant community, Chariandy’s novel reflects on alienation triggered by the increasing visibility of diasporic individuals in Canada – an alienation that is made worse by the fact that, like Watson’s old lady, the mother in this novel exhibits transgressive behavior. In all three works, the mothers suffer from dementia and are repeatedly characterized by Gothic metaphors that portray them as monsters – ghosts, zombies, and vampires. In turn, their supposedly monstrous identities trigger apocalyptic rituals of purification and their expulsion from their communities. In his influential Essay Concerning Human Understanding (1689), John Locke famously insisted that personal identity is defined by remembering one’s own actions and by the ability to narrate past experiences in the present (cf. Whitehead 2009: 53-58). In Locke’s writing, cognitive impairment was also repeatedly used to distinguish citizens from non citizens (cf. Wright 2011: 18). During the 20th century, old age and dementia have increasingly come to be represented as a horrifying effacement of this memory-informed citizenship, disrupting the continuity of both body and mind. Susan Behuniak (2011), for example, analyzes the pervasive construction of people with Alzheimer’s disease as zombies. Citing Elizabeth Herskovits, Behuniak observes that “the subjective experience of aging and of senility have become increasingly horrific and monstrous; we are all afraid of losing our minds as we grow old” (1995: 148). In keeping with my focus on apocalyptic rituals of expulsion, Hannah Zeilig argues further that “biblical allusions pepper the language that is used about dementia”; in the UK, “a recent report referred to dementia as a ‘millennium demon’ and noted the need for a ‘crusade’ to overcome it” (2012: 260). Whereas Cartwright relied solely on religious discourse, Gothic metaphors and the legacy of religious apocalyptic narratives inform the novels under consideration and shape their uncannily similar plots and conclusions. In all three works, the tense relationship between the generations is resolved by the death of the parent suffering from dementia, followed by ritually purgative attempts at house cleaning. Although the novels focus on the impact of dementia within the confines of the narrators’ families, the fall of the elderly man or woman is also tied to the broader socio-political

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projects of revising cultural memory and of mediating the agonistic relationship between different generations within the nation-state. In essence, my readings of Watson’s, Ignatieff’s, and Chariandy’s novels allow me to trace how the religious ideal of the youthful, ‘new man’ and the concomitant rejection of the ‘old man’ gained strength and authority from newly emerging biomedical discourses concerning pathological memory loss in the late 19th and early 20th centuries. In The Double Hook, Scar Tissue, and Soucouyant, the legacy of this religious ideal continues to fuel intergenerational struggles and to arbitrate in decisions concerning which individuals constitute proper citizens in the modern Canadian nation state. The two research questions posed in this essay demonstrate the ways in which literary studies can enrich dementia studies. First, how are representations of dementia shaped by metaphors drawn from familiar Gothic and apocalyptic literary plots? Second, how do these cultural representations contribute to the socio-political work of imagining the nation by distinguishing citizens from non-citizens and portraying the latters’ expulsion from the nation-state? Part one of this essay offers a context for both my literary approach to dementia and my analysis of the Gothic and apocalyptic motif of the fall of the old woman in Canadian fiction. In section one, I trace the shift from early religious to increasingly Gothic and apocalyptic accounts of aging, old age, and dementia. In section two, I outline the relationship between dementia and metaphor, drawing on key insights in Susan Sontag’s book Illness as Metaphor (1977). In section three, I provide a brief history of the Gothic. Section four explores the intersection of apocalyptic discourse and the Gothic in Canadian dementia narratives. I refer to Ignatieff’s and Chariandy’s novels as ‘dementia narratives’ because they were explicitly written and have been hailed by readers as such (cf. Valpy 2006 and Chariandy 2007b: 814). In Part two, I apply my methodology and theoretical apparatus to a close reading of the three novels. The shift from religious to scientific views of aging, old age, and dementia According to Cole, before 1800, when most people in Europe and North America lived in families and communities “regulated by religious and social principles of hierarchy, dependency, and reciprocal obligation, acknowledgement of the intractable sorrow and infirmities of age remained

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culturally acceptable” (1992: 230). Physical decline and age-related infirmity were understood as part of God’s design – punishment for original sin – which would be more than compensated for by the pious individual’s spiritual return to God. Yet by the 1830s, these earlier views had receded in the face of Victorian society’s growing anxieties associated with growing old (ibid.: 163). Unlike their predecessors, middle-class Victorian Americans relied on “the primitive mechanics of splitting images of a ‘good’ old age of health, virtue, self-reliance and salvation from a ‘bad’ old age of sickness, sin, dependency, premature death and damnation” (ibid.: 230). Within this newly emergent dualist framework, born of the capitalist “drive for unlimited individual accumulation of health and wealth,” the aged declining body and cognitively frail mind “came to signify precisely what bourgeois culture hoped to avoid: dependence, disease, failure, and sin” (ibid.: 231). As a result, aging, old age, and dementia were increasingly aligned with dread and evil. According to Cole, the “primary virtues of ‘civilized’ morality – independence, health, success – required constant control over one’s body and physical energies” (ibid.: 90-91). Old age thus served as a receptacle for capitalist society’s terrors associated with loss of control and independence. In his famous Clinical Lectures on the Diseases of Old Age (1861), Jean Charcot aptly gave voice to the paradigm shift as it was reflected in 19 thcentury medical discourse when he insisted that physiology “absolutely refuses to look upon life as a mysterious and supernatural influence which acts as its caprice dictates, freeing itself from all law” (qtd. in Cole 1992: 197). In effect, Charcot was bent on replacing the consoling narratives of religion with the forensic discourse of empirical science. Taken together, the biomedical and religious turn away from divine to human control put a greater onus on one’s individual, moral responsibility to ensure a good and healthy old age. Dementia and Alzheimer’s disease as metaphors for evil The association of unhealthy aging with failing moral control made it ripe figurative embellishment. In Illness as Metaphor, Sontag begins by reminding us that “[e]veryone who is born holds dual citizenship in the kingdom of the well and in the kingdom of the sick” (1977: 3). Like Sontag’s analysis of cancer, my study of Alzheimer’s is less about “what it is really like to emigrate to the kingdom of the ill and live there” and more about “the

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fantasies concocted about that situation: not real geography, but stereotypes of national character” (ibid.). In many ways, what Sontag astutely observed with respect to historical representations of tuberculosis and, more recently, of cancer – namely their mysterious nature at particular junctures in history – currently holds true for Alzheimer’s. As Sontag explains further, what she terms “master illnesses,” including TB, cancer, and, I would add, Alzheimer’s, are invariably perceived as the “germ of death itself” (ibid.: 19). It is these types of fatal disease, Sontag argues, “thought to be multi-determined (that is, mysterious) that have the widest possibilities as metaphors for what is felt to be socially or morally wrong” (ibid.: 61). Put somewhat differently, these mysterious illnesses inspire dread and are categorized as ‘evil.’ In her analysis of the workings of dementia as a cultural metaphor, Zeilig likewise observes that “above all, for most of us, the word ‘dementia’ like AD invokes a profound dread” (2012: 262). My contribution to the discussion of dementia as a cultural metaphor lies in exploring how the meanings attributed to the suffering and loss instigated by ‘master illnesses’ such as Alzheimer’s disease, as well as the delegation of blame, culpability, and agency, are mediated through narratives – more precisely, through literary modes such as the Gothic and the discourse of apocalypse. Once it is categorized as morally wrong and horrifying, the illness is, in effect, seen through the lens of the Gothic, which typically exposes the existence of evil, and features monsters and monstrous transformations. It is primarily the narrative of apocalypse, however, that is employed to bring about the resolution of narrative tension through the expulsion of the non-elect and rituals of purification. In contemporary Western society, what society deems dreadful or, to use an even more morally loaded term, evil, is increasingly aligned with contemporary forms of age-related ‘mental disintegration’ – ‘cognitive decline’ and, more recently, what is termed ‘Mild Cognitive Impairment’ (MCI).1 The shifting definitions of evil are relevant to my study because disease in general, and Alzheimer’s disease in particular, typically arouses 1

In using the term ‘evil,’ I draw on the fact that, during classical times, evil had a far broader meaning than it does today – encompassing forms of suffering that accrued simply by virtue of being mortal as well as the additional suffering associated with errors in human judgment (cf. Corey 2008: 2). After the Enlightenment, the notion of evil began to narrow such that it now connotes the antithesis of rationality and morality – “just extreme human wickedness” (ibid.).

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profound dread and is frequently personified as a monstrous evil, making it ripe for the Gothic. A brief history of the Gothic As I explain in my book Dispossession (2012), in general, scholars find it increasingly difficult to define the Gothic, a complex poetics that “mutates across historical, national, and generic boundaries as it reworks images drawn from different ages and places” (Smith 2007: 4). Drawing on the story of Frankenstein’s monster, Maggie Kilgour likens the Gothic to a literary patchwork, “assembled out of bits and pieces” (1995: 4). Unlike the British Gothic, which developed during a definable time period and has a recognized coterie of authors, the American Gothic is less easily specified (Goddu 1997: 3). Critics have noted, however, the presentist focus of the American Gothic, which is largely shared by Canadian writers; in this regard, Lloyd-Smith’s view that “the distinctive theme and deepest insight of American Gothic, the sense that there is something behind, which may not be, as in European Gothic, the Past, but some perpetual and present Otherness hidden within, behind, somehow below the apparently benign ‘natural surface’” also holds true for the Canadian Gothic (2004: 86). His views are echoed by Eric Savoy’s sense that “the entire tradition of the American Gothic can be conceptualized as the attempt to invoke ‘the face of the tenant’” (1995: 14) within. As I argue in Dispossession, in the case of early Canadian literature, the landlord is typically the belated arrival, the settler-invader, and the tenant is the Native North American. Since the publication of Sheila Watson’s The Double Hook, however, dementia has also played a profound role in the Gothic characterization of the monstrous Otherness hidden within. In Canadian writing, the Gothic is typically mobilized to identify and resolve what a particular society deems dreadful or evil. In an effort to recapture the elided classical awareness that evil is not solely something that we do but also something that we suffer, psychoanalyst C. Fred Alford offers additional insight into the workings of the Gothic and, in the process, helps us to understand its pervasive deployment in portrayals of Alzheimer’s disease. As Alford explains, “[e]vil is an experience of dread” (qtd. in Corey 2008: 7). He defines the latter as “the uncanny experience of discomfort we have of being human, vulnerable, alone in the universe, and

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doomed to die” (ibid.). Affirming Alford’s hypothesis, Corey argues further: In dread, we are terrified by the reality of violation, pollution, infection, confusion and destruction. We fear that the limits that secure our physical well-being, mental health, and societal order will be crossed, afflicting us with suffering and chaos. This fear is aggravated by the ever-present reality of death, which reminds us that ultimately we cannot escape being victims, no matter how secure we are in our daily lives. (ibid.)

Psychoanalytic and literary theorist Julia Kristeva likewise considers the experience of dread and the role of narrative in asserting agency in the face of loss – literally expressing what society deems dreadful. She specifically aligns the mood of dread and the ghosts and grotesques that populate the Gothic with what she terms ‘the abject’ and products of ‘abjection’– terms that she derives from the literal meaning of ‘ab-ject’: ‘throwing off’ and being ‘thrown under’ (cf. Hogle 2010: 7). According to Kristeva, the dead body is “the most sickening of wastes [...] the utmost of abjection [...] death infecting life [... that] beckons to us and ends up engulfing us” (1982: 3-4). Kristeva’s insights underscore important parallels between Gothic and apocalyptic narratives, the latter of which symbolically enacts a violent expulsion of what society deems evil. In Death and Desire, Tina Pippin explains that the story of Revelation figures the “ultimate release of a colonized people” (1992: 28), but this release can only be effected by the murder and consumption of a powerful female. In the case of the Gothic, however, whatever is expelled or hastily buried insistently returns to haunt the living. As a terminal condition that leads to death, age-related dementia, and, more precisely, Alzheimer’s disease – which is proving ever more difficult to diagnose – is inextricably connected to the abject and to society’s fear of death and the corpse, as Behuniak (2011) argues. Taken together, Corey’s, Alford’s, and Kristeva’s theoretical observations shed light on both the motivations for and the potentially harmful ramifications of unselfconsciously deploying Gothic and apocalyptic discourses to represent Alzheimer’s disease. The theoretical considerations and practical outcomes associated with the Gothic’s capacity to fashion monsters and the apocalyptic attempt to expel them demonstrate the need to explore their aesthetic and political inflections and, equally important, to discover alternative rhetorical tropes and genres that allow the supposed monsters to be revealed as human beings deserving of respect and care.

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Canadian literature’s apocalyptic and Gothic dementia narratives In Rewriting Apocalypse (2005), I observe that the apocalyptic paradigm pervaded Canadian literature from its beginnings and has been used to figure struggles between different generations, genders, and races within the nation. Rather than tell the story of the end of the world and the creation of a heavenly world reserved for God’s chosen people from the familiar perspective of the saved, the Canadian approach entails conveying the experience of the disenfranchised, those denied entry into the new paradise and condemned to die (ibid.: 4). Thus, many Canadian works highlight the devastation wrought by apocalyptic thinking on those accorded the role of the non-elect (ibid.: 5). As I suggest in Rewriting Apocalypse, one of the easiest ways to become acquainted with apocalypse’s distinctive political, structural, and thematic features is to consider Revelation, the biblical text on which many Canadian fictions rely. In essence, the narrative of Revelation relies on binary opposition: Apocalyptic narrative and prophecy is a chiaroscuro history, in which the agencies are the opponent forces of light and of darkness and there is no middle ground between the totally good and the absolutely evil. On the negative side are ranged Satan, the Beast, and the Great Whore, “Babylon the Great, the Mother of Harlots and Abominations of the Earth,” together with the earthly agents of iniquity [...] to whom exegetes soon applied the collective term “Antichrist.” Opposed to them are God, Christ, the “new Jerusalem” [...] and the company of earthly saints. The consummation of history [...] occurs not by mediation between these polar opposites, but only after the extirpation of the forces of evil by the forces of good. (Abrams 1988: 11)

In addition to observing its binary nature, scholars have also commented on the gendered nature of the violence at the heart of apocalypse, as the rage unleashed on the non-elect is expressed most graphically in the fate of Jezebel and the Whore of Babylon. According to Revelation (17:16), the Whore’s flesh is devoured and burned up with fire. While the fictions I discuss make use of similar imagery, many Canadian fictions allow for a retrospective analysis of apocalypse’s traumatic impact instead of entirely acquiescing to apocalypse’s violent teleology. Ultimately, by exposing the pervasiveness of the apocalyptic paradigm and by analyzing its ruthless exclusion of difference, Canadian fiction typically invites readers to reconsider apocalypse from the perspective of what Canadian poet Leonard Cohen calls “the beautiful losers” (1966). In the novels under consideration

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here, older adults suffering from dementia fall into this category of exclusion. Moreover, in these works, apocalyptic motifs are braided together with elements of the Gothic to drive home the uncanny horror of dementia. As a literary scholar, I have researched and written extensively on the literary and socio-political dynamics of the Gothic and its related concern with resolving who or what is accountable for moral crimes, in essence, the cause of human suffering or ‘evil.’ As with their use of apocalyptic motifs, Canadian writers and critics have learned to adopt a self-conscious and skeptical approach to the Gothic due to the close historical connections between the Gothic mode and the cultural construction of the Canadian nation state. In her introduction to Canadian Gothic, Cynthia Sugars explains that the extensive colonization of North America in the 18 th and 19th centuries “coincided with the rise of the Gothic as a genre in Europe,” a historical fact that explains why so many early Canadian writers applied this mode to their “experiences in the New World” (2012: 410). Canada’s ongoing, reflexive negotiations with both Gothic and apocalyptic discourses make the Canadian context a critically productive site for analyzing the governing metaphors and assumptions that constellate around age-related dementia and Alzheimer’s disease.

CANADIAN DEMENTIA NARRATIVES AND THEIR ROLE IN ESTABLISHING THE MODERN NATION The Double Hook: Claiming our home on native land Set in a mythic, isolated community in British Columbia, The Double Hook begins with the violent death of the old lady, an unnamed, mixed-race matriarch who transgresses the limits of property and propriety by wandering onto other people’s land and by fishing selfishly for sport rather than providing food for her family. After throwing his mother down the stairs to her death, the old lady’s son James flees the community. His flight instigates the disintegration of the entire community which culminates in the burning of the mother’s home and the suicidal immolation of James’s sister, Greta. The forces of entropy are only resolved when James returns in time to witness the birth of his son. At the end of the novel, James resolves to build a new house near the charred remains of his mother’s home. In The Double Hook, the features that threaten to subvert the dominant discourses of the modern Canadian nation-state are ultimately expelled – the Gothic,

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wandering, monstrous mother and the Native. Owing to this process of abjection, the integrity of the community and nation is seemingly secured. In Watson’s unpublished commentary on The Double Hook, she describes the Cariboo District, on which the setting of the book is based, as “devious” and “hostile,” filled with “the isolation of which spatial separation is a symbol, the isolation of mind from mind” (qtd. in Morriss 2002: 55). The formation of the new community in Watson’s novel is, however, quite literally predicated on expulsion and sacrifice. Two threatening, partNative women die violently; the old lady is murdered by her son James: “Pushed by James’s will. By James’s hand. By James’s words: This is my day. You’ll not fish today” (Watson 1966: 19). In keeping with my paper’s emphasis on the Gothic and its relation to Kristeva’s notion of ‘the abject,’ it is significant that throughout the novel, the old lady is associated with death. We are told, for instance, that as she watched the old lady, her daughter-in-law, Ara, “felt death leaking through from the centre of the earth. Death rising to the knee. Death rising to the loin” (ibid.: 13). Equally important, in accordance with the pervasive cultural metaphors of ghosts and zombies as tropes for dementia, the old lady is also portrayed as a ghost that can neither recognize nor respond to others. As Ara says, “I might as well be dead for all of her” (ibid.: 12). In this way, her characterization aligns with more contemporary portrayals of individuals suffering from dementia as ghosts or zombies (cf. Behuniak 2010; Zeilig 2012). The old lady’s fear and helplessness are made apparent when we are told that her children “lived waiting. […] Moving their lips when they moved them at all as hunters talk smelling the deer. […] Moved their lips saying: She’ll live forever. And when they’d raised their eyes their mother was watching as a deer watches” (Watson 1966: 33). Although critics have focused on the old lady’s monstrous selfishness and predatory behavior, a deer is hardly a monstrous predator (cf. Bowering 1985). The old lady’s supposed lack of concern for others is also challenged when Greta embarks on her suicide attempt and the ghost of the old lady addresses Greta directly, warning her daughter not to play with matches (Watson 1966: 74). Viewed in this light, James’s murder of the old lady constitutes an attempt on the part of the younger generation to gain power and authority. Before committing suicide, Greta rightly fears for her life. Speaking of James, she

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says, “[h]e’ll kill me too. […] He’ll shove me down for standing in his way” (ibid.: 55). When he returns after his sister kills herself and razes their mother’s house, James views these events as an act of grace which paves the way for the creation of a new world: In his mind now he could see only the seared and smoldering earth, the bare hot cinder of a still unpeopled world. He felt as he stood with his eyes closed on the destruction of what his heart had wished destroyed that by some generous gesture it had been turned once more into the first pasture of things. I will build the new house further down the creek, he thought. All on one floor. (ibid.: 131)

As this passage suggests, James’s gesture reflects the novel’s explicit debt to biblical apocalypse. In The Double Hook, the transgressive female figures must die so that the youthful male Elect can establish a new Eden. Scar Tissue: Apocalyptic fires and the return to Eden Whereas The Double Hook relies on the fragmented poetic techniques characteristic of literary modernism to trace the agonistic struggle between a wandering mother and her son, Scar Tissue offers a realist portrait of a middle-aged philosophy professor’s struggle to find meaning in his mother’s illness – an illness diagnosed as AD and relentlessly portrayed as a pathological maternal legacy. In keeping with The Double Hook, Scar Tissue features the deadly fall of an elderly parent (in this case, the narrator’s father), followed by the purgation of the supposedly tainted maternal home. Scar Tissue also contains both Gothic tropes and the apocalyptic impulse to rectify original sin. From the start, the narrator informs readers that “the banal heartlessness” of his mother’s death prompted his quest for redemption – to find “some way back to the unscarred beginnings” (Ignatieff 2006: 1). The task he sets for himself to redeem her death recalls that of Victor Frankenstein, an infamous literary son who responds to maternal death with a similar attempt to transcend mortality. Like Mary Shelley’s Gothic hero, Ignatieff’s protagonist also relies on scientific discourse in the hopes of conquering fate. With respect to the origin of evil, Scar Tissue’s narrator traces the transmission of dementia in his family along the maternal line from his great-grandmother. He positions himself as the nth Adam, the next inheritor in the sequence, and confesses his deepest fear that he will be its next target. Rather than accept his mother’s illness as God’s will, however, the

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narrator turns toward science – a shift that, in keeping with broader societal trends, enables him to conceive of his mother’s fate as a violation and a Gothic crime that he personally must resolve. Early on, the narrator ponders how he can expel the shameful illness that plagues his family. One night, while lying beside his ailing mother in bed to prevent her from wandering, the narrator briefly considers smothering her. When he turns and gazes at her face, he finds that her vacant gaze is the same as his maternal grandmother’s – a classic example of Gothic doubling (cf. ibid.: 51). As this episode suggests, the narrator’s fear of dementia precludes him from seeing his mother as a unique individual deserving of life. In Scar Tissue, the narrator’s urge to cleanse the family home after his father’s fall, which he blames on his mother’s illness, is likewise motivated by a desire for purification. As the narrator explains: If I could have, I would have ripped the pictures off the hooks, the hooks out of the walls, the carpets off the floors, the covers off the sofas. I could have torched the place. As if to say: you took him, so take the rest, so take everything. As if to say, I don’t want to remember anything [...] I wanted to lose it all. I felt flames roaring in my head and my heart was full of savage joy. Then twenty black garbage bags were full and it was a new day. [...] This house, I believed, had been inhabited by illness and I had purified it. This place had been possessed. I had cleansed it. (ibid.: 95)

In this passage, the narrator invokes a host of familiar apocalyptic images: purification, fire, and cleansing in anticipation of ‘a new day.’ In the light of the fact that his mother is a painter and he imagines ripping ‘pictures off the hooks,’ it is significant that the narrator’s ritualistic house cleaning and the sale of the family farm is followed by his confession to his brother that he also destroyed all of his mother’s paintings. The narrator reads foreknowledge of her own dementia (based on her lineage) into her final painting, Christ descending into limbo, and he concludes that it motivated her decision to ask him to destroy her life’s work (ibid.: 167). As in the passage concerning his purging of his father’s beloved farmhouse, in his account concerning the destruction of his mother’s art, the narrator again likens his actions to a spiritual rite. “I had assisted at a scene of mutilation,” he asserts, “like the mourning rituals of countries where widows cut and daub their own garments and beat their temples in sorrow” (ibid.: 166). Given that his mother is still alive when he destroys her paintings, his gesture reinforces the Gothic portrayal of dementia as death-in-life.

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Despite the desire to herald ‘a new day,’ in Scar Tissue, the narrator remains obsessed with the dreadful mystery of his mother’s illness, just as ancestral spirits haunt the characters in the other two novels. Forsaking all human company, the narrator locks himself in his room. When he looks at the night reflection in his window, he sees “the faces of the dead” (ibid.: 191). Although his physician assures him that all the tests demonstrate that his brain remains unscarred, he insists the doctor is mistaken. By embracing the family’s shameful secret and demonstrating his commitment to apocalyptic destruction and revelation, the narrator believes he will ultimately be rewarded by his passage “through the gates of truth” (ibid.: 196). Soucouyant: Revealing a ‘long line of knowledgeable women’ In contrast to The Double Hook’s and Scar Tissue’s adherence to Gothic and apocalyptic plots, Soucouyant draws on Caribbean mythology to deconstruct both genres’ tendency to associate transgressive and cognitively frail women with evil and thereby justify the latter’s violent expulsion from the new world. Soucouyant tells the story of a young man in the 1980s who returns to his mother’s home in Scarborough, Ontario, after a two-year absence. Rather than portray the mother’s dementia as a pathological maternal legacy that calls for apocalyptic purification, the narrative suggests that her illness was partly instigated and certainly exacerbated by the traumatic dispersal of native Trinidadians by Allied military forces during WWII and the subsequent scattering of these peoples across North America. In its graphic depictions of the fires that rained down from the sky and the Allied troops’ sexual exploitation of the local women, Soucouyant politicizes and deconstructs apocalypse’s portrayal of the death of the Whore of Babylon and the destruction of the old world in favor of a New Jerusalem reserved for the male elect. The familiar Gothic fall occurs in Soucouyant when Adele wanders and falls to her death in the house she shares with her son. Although not pushed to her death like the old lady in The Double Hook, her death, like the father’s death in Scar Tissue, is the direct result of dementia, which, as in Scar Tissue, is portrayed in excruciating detail. In Soucouyant, the narrator remains haunted not by his mother’s illness but by the mythic, Caribbean tale of an evil female spirit who disguises herself as a woman by day and, by night, slips out of her skin and transforms herself into a ball of fire. Moving from house to house, the soucouyant feasts on the blood of its

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neighbors. As I noted earlier, the uncanny presence of ancestral spirits together with apocalyptic attempts to exorcize these spirits in these novels demonstrates how dementia functions in the modern, Canadian nation-state as a trope of dreadful Otherness that must be expelled. Soucouyant, however, relies on the trope of dementia to destabilize normative temporalities and to afford possibilities for a doubling back to repressed histories and origins. These alternative histories include knowledge of colonized and displaced peoples’ prior claims to the land, matriarchal and non-Christian spiritual traditions and knowledge, and, finally, non-individualistic and non-hierarchal relationships predicated on dyadic states epitomized by an unbroken mother-son bond. Using fragments from his mother’s intermittent tales of the soucouyant, Chariandy’s narrator eventually pieces together the story of his mother’s and grandmother’s traumatic past in Trinidad during World War II. In contrast to The Double Hook’s and Scar Tissue’s portrayals of a universal Oedipal battle restricted to two generations within a single family, Soucouyant demonstrates that the family’s struggle is inextricably tied to the earlier political violence and trauma instigated by the Allied occupation of Trinidad during WWII. Elusive shards of Adele’s traumatic memory gesture further into the past, to the African diaspora caused by slavery and the Indian diaspora triggered by indentured labor, adding further layers to the text’s complex palimpsest of cultural memory. The reappearance of oppressed groups in cultural memory serves as the novel’s means of insisting on the presence of elided and alternative histories – alternatives to the Canadian nation-state’s Freudian Oedipal plot of generational supersession. In this way, Soucouyant offers a profound alternative to The Double Hook’s expulsion of the Native Other. Recalling Watson’s old lady’s lack of respect for private property, in Soucouyant, to her son’s horror, his mother “wandered the streets” and “borrowed things from corners stores and people’s garages, failing to recall the concept of private property” (Chariandy 2007a: 18). Whereas The Double Hook portrays intergenerational tension resolved by matricide and Scar Tissue ends with the narrator’s apocalyptic fantasy of joining the elect and passing through the gates of truth, Soucouyant represents the burning of women – the narrator’s mother and grandmother – as the text’s central, unspeakable trauma. In Adele’s mind, and in her son’s, the horrific fire is fused with the dream-like memory of glimpsing a soucouyant. Yet, as Ade-

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le’s son explains, “it’s not really about a soucouyant. It’s about an accident. It’s about what happened in her birthplace during World War II. It’s a way of telling without really telling” (ibid.: 66). Initially, in keeping with the Gothic story, the boy viewed his grandmother as “a monster”: “Someone with a hide, red-cracked eyes, and blistered hands. Someone who would claw her stiffened thumb across her eyes and try to smile through the ruin of her mouth” (ibid.: 116). His mother, whose skull was seared during the fire, lost her hair and wears a wig. At one point, when she is too ill to remember to conceal her defacement, she appears without her wig and her son views her as a monster. Toward the conclusion, however, readers learn how these supposed monsters were created. Adele and her mother were forced from their home in the 1940s, when the Allies seized Trinidad. Unable to feed herself or her daughter, Adele’s mother prostituted herself to American soldiers and, at age five, Adele locks eyes with a soldier having sex with her mother, who later teaches Adele how to use his lighter. When the mother returns home and discovers that the soldier has consorted with Adele and brought her gifts, she is enraged and vents her anger on her child. Rejecting her mother, Adele shouts: “You disgusting. [...] You a whore. [...] You not my mother. You horror. All horror!” (ibid.: 189) Afterward, Adele runs away to the Army base, but her mother follows. After a soldier douses Adele’s mother with gasoline, Adele is overcome by the fumes and believes that she and her mother “will forever stink of something shat from the bowels of the earth and cooked in hell. They will never be clean again” (ibid.: 192). Invoking apocalypse’s Manichean divisions between the clean and the unclean, the elect and the non-elect, this episode restages the infamous burning of the Whore. In a “miraculous achievement of agility and determination, Adele flicks the lighter” (ibid.), setting both her mother and herself on fire, so that in Chariandy’s retelling of the soucouyant story, the monster does not willingly transform into a fireball; instead, the apocalyptic fires unleashed on the island by the Americans literally efface its most vulnerable inhabitants. Equally important, according to the narrative, the trauma associated with this event contributes to Adele’s dementia. As the narrator explains, his mother was not “simply forgetting”; her past was also coming back to her: “a word would slip from her mind and pronounce itself upon her lips” (ibid.: 22). At one point, she says the word “Chaguaramas,” and it triggers a memory of how she and her mother were burned: “She loss

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she skin at the military base in Chaguaramas. She wore a dress of fire before it go ruin her. I wore a hat of orange light, a sheet of pain, yes, on my head and neck” (ibid.: 24). Rather than portray dementia as an isolated biomedical disease, Soucouyant represents pathological forgetting within the larger social context of the gendered and racialized, traumatic history of the Afro-Indian diaspora. In contrast to The Double Hook and Scar Tissue, which insist on the malignancy of the maternal legacy, however, Soucouyant affirms that both destruction and the capacity to heal are part of this complex inheritance. Recalling The Double Hook’s references to the old lady and Greta, and Scar Tissue’s uncanny maternal doubling, in Soucouyant, the figure of the abject old woman multiplies and includes the narrator’s mother, Adele, his nameless grandmother, and an old lady who acts as a healer in the community. We are told that the “old lady” had “long memories and the proper names for things [...] Most of all, the old woman could heal, a skill she had inherited from a long line of knowledgeable women” (ibid.: 182). From his very different vantage point, Chariandy’s narrator mimics the old lady by looking backward into the past. In contrast to Scar Tissue, Soucouyant turns to the past to find a “way out of a Freudian world limited to two generations, one from which older women are missing” (Woodward 1999: 150). Whereas the purgative rituals in Watson’s and Ignatieff’s novels entrench the patriarchal and Freudian model of the family composed of two warring generations, the fires in Chariandy’s novel illuminate an alternative model based on three generations – a model that affirms “a long line of knowledgeable women” and establishes a heritage that, in Woodward’s terms, is “based not on a struggle for domination but on [...] care” (ibid.: 151), demonstrated when Adele’s son responds to his mother’s confusion by imaginatively taking their part and retelling their story. In this way, Chariandy’s narrator helps his community to imaginatively “undo” (ibid.: 193) the legacy of violence. In contrast to The Double Hook and Scar Tissue, Soucouyant deconstructs the fall of the old woman and, in so doing, offers an alternative to the apocalyptic promise of a new world reserved for a male elect – as reflected in its concluding counter-image. The narrator recollects walking as a child “along a shore of hot rocks and trash. My grandmother stumbling and reaching, without thinking, for Mother’s hand. Each reaching for the other and then holding hands the rest of the way” (ibid.: 196). As the narra-

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tor explains, “I remember being awed by this. It was all so incredibly ordinary. They were just a mother and daughter” (ibid.). In view of the dominance of the apocalyptic and modernist plots of aging and dementia, which view women as vehicles of a degeneration linked with evil and sinful transgression – all whores, all horror –, Soucouyant’s reliance on the trope of dementia to offer an alternative image of intergenerational matriarchal kinship, a secular revelation, is nothing short of miraculous.

CONCLUSIONS: DECONSTRUCTING THE MOTHER/MONSTER I began this paper by suggesting that one can discern in Canadian literature from the mid-20th century to the present an implicit reliance on both Gothic tropes and apocalyptic rituals in narratives that feature the fall of older women suffering from dementia. Such tropes, particularly that of the female monster, play into apocalyptic desires to destroy the old world and usher in the new. These narratives also illustrate how Gothic and apocalyptic narratives operate on the level of the individual, the family, and the nation-state. I maintain that the apocalyptic narrative, a founding story within the US, has had an equally profound, albeit somewhat different role to play in Canadian culture owing to the latter’s more skeptical approach to the biblical story of the end. As my study suggests, Canadian writers such as Chariandy are increasingly deconstructing Gothic and apocalyptic motifs that stigmatize elders coping with dementia. Re-imagining late-onset dementia is a crucial task since more people than ever before can anticipate a longer life – one that need not be viewed through the distorted lens of apocalyptic or Gothic horror. If there can be said to be a goal in the imaginative work of revising portrayals of dementia, perhaps Margaret Morganroth Gullette puts it best when she writes: The overarching question is, How might more people of all ages develop a collective identification with the whole life world – especially the ages of life ahead? Only through such imaginative solidarity can we maintain our precious sense of selfcontinuity and possibility within the dangerous age ideology we confront in the twenty-first century. […] Is it too blissful to imagine, as our goal, being able to feel at home in the life course at every age? (2004: 20)

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R EFERENCES Abrams, Mike H. (1988): “Apocalypse: Theme and Romantic Variations.” In: Harold Bloom (ed.), The Revelation of St. John the Divine, New York: Chelsea House, pp. 7-33. Behuniak, Susan (2011): “The Living Dead? The Construction of People with Alzheimer’s Disease as Zombies.” In: Ageing and Society 31/1, pp. 70-92. The Bible: Standard Edition (1971), New York: William Collins. Bowering, George (1985): Sheila Watson and The Double Hook, Ottawa: Golden Dog. Chariandy, David (2007a): Soucouyant, Vancouver: Arsenal Pulp Press. --- (2007b): “Spirits of Elsewhere Past: A Dialogue on Soucouyant.” In: Callaloo 30/3, pp. 808-817. Cohen, Leonard (1966): Beautiful Losers, New York: Viking Press. Cole, Thomas (1992): The Journey of Life: A Cultural History of Aging in America, New York: Cambridge University Press. Corey, Paul (2008): Messiahs and Machiavellians: Depicting Evil in Modern Theatre, Notre Dame: Notre Dame University Press. Dillon, Lisa (2008): The Shady Side of Fifty: Age and Old Age in Late Victorian Canada and the United States, Montreal and Kingston: McGill-Queen’s University Press. Goddu, Teresa (1997): Gothic America: Narrative, History, and Nation, New York: Columbia. Goldman, Marlene (2005): Rewriting Apocalypse in Canadian Fiction, Montreal and Kingston: McGill-Queen’s University Press. --- (2012): Dispossession: Haunting in Canadian Fiction, Montreal and Kingston: McGill-Queen’s University Press. Gullette, Margaret M. (2004): Aged by Culture, Chicago: University of Chicago Press. Herskovits, Elizabeth (1995): “Struggling over Subjectivity Debates about the ‘Self’ and Alzheimer’s Disease.” In: Medical Anthropology Quarterly 9/2, pp. 146-164. Hogle, Jerrold E. (2010): “Elegy and the Gothic: The Common Grounds.” In: Karen Weisman (ed.), The Oxford Handbook of the Elegy, Oxford: Oxford University Press, pp. 565-584. Ignatieff, Michael (2006 [1993]): Scar Tissue, Toronto: Penguin.

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Kilgour, Maggie (1995): The Rise of the Gothic Novel, New York: Routledge. Kristeva, Julia (1982 [1980]): Powers of Horror: An Essay on Abjection, New York: Columbia University Press. --- (1987): “On the Melancholic Imaginary.” In: New Formations 3, pp. 518. Lloyd-Smith, Alan (2004): American Gothic Fiction: An Introduction, New York and London: Continuum. Morriss, Margaret (2002): “‘No Short Cuts’: The Evolution of The Double Hook.” In: Canadian Literature 173, pp. 54-70. Munro, Alice (1999): “The Bear Came over the Mountain.” In: New Yorker, December 27, pp. 110-142. Pippin, Tina (1992): Death and Desire: The Rhetoric of Gender in the Apocalypse of John, Louisville: Westminster John Knox Press. Richler, Mordecai (1997): Barney’s Version, New York: Knopf. Savoy, Eric (1998): “The Face of the Tenant: A Theory of American Gothic.” In: Robert K. Martin/Eric Savoy (eds.), American Gothic: New Interventions in a National Narrative, Iowa City: University of Iowa Press, pp. 3-19. Smith, Andrew (2007): Gothic Literature, Edinburgh: Edinburgh University Press. Sontag, Susan (1977): Illness as Metaphor, New York: Farrar, Straus, and Giroux. Sugars, Cynthia (2012): “Canadian Gothic.” In: David Punter (ed.), A New Companion to the Gothic, West Sussex: Wiley-Blackwell, pp. 409-427. Valpy, Michael (2006): “Being Michael Ignatieff.” In: Globe and Mail, August 26 (http://www.theglobeandmail.com/globe-debate/michael-val py-on-michael-ignatieff/article1378481). Watson, Sheila (1966 [1959]): The Double Hook, Toronto: McClelland and Stewart. Whitehead, Anne (2009): Memory, New York: Routledge. Woodward, Kathleen (1999): “Generational Models: Psychoanalysis, Feminism, Literature.” In: Kathleen Woodward (ed.), Figuring Age: Women, Bodies, Generations, Bloomington: Indiana University Press, pp. 149-170. Zeilig, Hannah (2014): “Dementia as Cultural Metaphor.” In: Gerontologist 54/2, pp. 258-267.

Narrating the limits of narration Alzheimer’s disease in contemporary literary texts I RMELA M AREI K RÜGER -F ÜRHOFF

In today’s industrialized Western societies, fear of cancer and AIDS has given way to fear of senile dementia, the most common form of which is Alzheimer’s disease.1 This neurodegenerative affliction leads to progressive loss of memory, sense of time and direction, self-perception, language and motor faculties, and control over basic metabolic processes – and it is still incurable. Alzheimer’s disease affects the identity of those who suffer from it, dramatically altering existing social relationships. In a knowledge society like our own that prizes cognitive performance, autonomy, and the apparently limitless possibilities of medicine while demanding that individuals assume responsibility for their own health, a diagnosis of dementia can be seen as both a personal tragedy and an affront to health care and cultural policy. Thus, Alzheimer’s disease represents not only an unsettling stroke of fate for the individual as well as a major social and political challenge in the light of demographic changes. It also symbolizes collective fears and is to some extent a symptom of our culture. The visibility of dementia has increased beyond specialist discourses thanks to media coverage of famous sufferers (such as Rita Hayworth in the United States, Margaret Thatcher in Great Britain, and Harald Juhnke, Walter Jens, and Gunter Sachs in Germany), spectacular ‘self-outings’ (for 1

In public debate and literary texts, Alzheimer’s disease is often used as an umbrella term to denote various kinds of late onset dementia.

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instance by the late US-president Ronald Reagan or former German soccer manager Rudi Assauer), and awareness-raising activities by non-governmental organizations. However, these incidents have also fanned the fears of large sections of the population because they challenge the notion that ‘good aging’ can be planned. According to government officials, 1.4 million German and 5.1 million American people suffer from Alzheimer’s disease today; national health institutes predict that this figure could triple by 2050 (“A Decade after The Decade of the Brain” 2010; “Zukunftswerkstatt Demenz” 2013). Not surprisingly, the topic of dementia has conquered the book market in recent years, and there seems to be no end to the rapidly expanding genre of Alzheimer’s stories (the proliferation of documentaries and feature films also suggests that Alzheimer’s has gained a firm place in Western public consciousness). Of course, the intersection of the medical discourse and literature is nothing new, as illustrated by representations of ‘historical’ diseases (such as consumption) and recent ailments (such as cancer or AIDS). Whereas these ‘more somatic’ diseases tend to leave the social and private ‘self’ of the afflicted person intact for a longer period of time, dementia-related ailments jeopardize personal memories and alter character traits and emotional behavior, sometimes turning the impaired person into a different and troubling version of his or her former self. Moreover, from a cultural point of view, the question of memory loss ties into political debates, especially in the aftermath of the Shoah. Since in this context ‘forgetting’ may be presumed as a willful refusal to remember or as the result of repression, not remembering seems to be suspicious, and those who lose their mental capacities for neurological reasons might be blamed for doing so intentionally. This happened for instance when Germany’s famous leftist intellectual Walter Jens faded into Alzheimer’s disease at the very moment when the media realized and discussed the fact that he had applied for membership in the Nationalist Socialist Party as a young student.

ALZHEIMER ’ S DISEASE AND THE NARRATIVE SELF The first literary texts on Alzheimer’s disease appeared in the 1990s, which were dubbed ‘the Decade of the Brain’ in the United States. Thus, one may consider these early Alzheimer texts both in the US and in European countries as shedding a critical light on a “new era of discovery [...] in brain research” (Presidential Proclamation 6158 1990), by contributing stories of

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individuals who struggle with the gap between (limited) progress in terms of diagnostic achievements and shortcomings with regard to therapy and nursing care. Since many Alzheimer’s stories strive to offer a holistic view that does not reduce the protagonists to their declining reflexivity and rationality, they can be understood as literary counterparts to and incentives for critical gerontology and person-centered care (cf. Kitwood 1997; Wetzstein 2005; Leibing 2006). Most of the fictional texts and first-person or biographically based accounts that have been published up to now revolve around three main themes: senile dementia and early-onset Alzheimer’s as a threat to love relationships; as a reformulation of family dynamics and the genre of the ‘family novel’; and as a disease with a socio-political dimension, especially in the context of World War II, the Shoah, and postcolonial migration. Their narrative patterns have already been examined in excellent scholarly articles (Helbig 2005; Hartung 2005; Roy 2009; Vedder 2012). However, as of yet, there has been little systematic analysis of the literary devices these texts use to represent loss of memory and language faculties, at times in ways that do not merely register this loss, but render it palpable to readers. I would like to argue that in reflecting on the successive breakdown of memory and the irreversible loss of personal narrative and language, some literary texts challenge the Western concept of an autonomous subject that can tell his or her own life story (Hartung 2005). In this way, narrations of dementia may reveal the aesthetic possibilities and limits of literature and display a self-reflexive dimension that has until now only been rudimentarily explored. Moreover, these stories are significant from an ethical point of view because they offer first-person-based or imaginary insights into the experience of people with dementia, which no other discourse (e.g., that of the medical community or of caregivers) can provide. From an anthropological perspective, humans seem to be storytelling beings. Phenomenological philosophy, psychology, sociolinguistics, narratology, medical anthropology, disability studies, and nursing science are united in their view that storytelling helps to stabilize identity (Ricœur 1983-1985; Mitchell and Snyder 2001; Holler and Klepper 2013). Philosophers and literary scholars such as Wilhelm Schapp, Norman Holland, and Paul Ricœur have introduced the concept of ‘narrative identity,’ arguing that individuals make sense of the world, history, and their own lives by telling stories, thereby creating social and individual cohesion, causality, and continuity across time. As a recent German compendium on narratolo-

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gy puts it, even though both ‘identity’ and ‘narration’ may be instable, shifting and culturally embedded, there is no variation of personal identity that can be conceptualized beyond narrative (Klein 2011: 84). In his book Living Autobiographically: How We Create Identity in Narrative, Paul John Eakin focuses on the process of deliberate or inner, unperceived selfnarration as a life-long work of “self-construction” (2008: 2) and “identity formation” that fosters an “extended self” (ibid.: 34). He adopts this term from developmental psychology to characterize a self that is based on the idea of a certain coherence between past, present, and future, a “self of memory and anticipation [...] that is the primary subject of autobiographical discourse” (ibid.: 3). Eakin analyzes the culturally enforced rules that govern the construction of these narrations within a “narrative identity system” (ibid.: 31) – rules that apply not only to written autobiographies but also in a very similar way to those bits of self-narratives that we constantly tell ourselves and others. If identity relies on memory and storytelling capacities, what happens in the case of dementia, when the ability to remember fails and language tends to disintegrate? Eakin does not elaborate on what exactly qualifies as a selfnarration or – to put it the other way round – how reduced in vocabulary, grammatical structure, emotional underpinnings, context-sensitivity, and reliance on episodic memory a spoken or written utterance may be in order to still count as displaying and fostering the narrative self of the speaker. Drawing on clinical case studies about patients who suffer from brain damage and memory loss and on literary representations of Alzheimer’s disease, Eakin asks whether these “de-storied individuals” (ibid.: 8) who can no longer engage in the performance of self-narration still “‘count as’ a person” (ibid.: 34) or rather become “de-selved” (ibid.: 46). Making the ethical claim that “some nonverbal, nonnarrative senses of self doubtless [sic] continue to function after extended selfhood has run its course” (ibid.: 49), he turns to literary accounts that describe “post-narrative condition[s]” (ibid.: 52) and argues that some of these texts testify to “a register of selfhood beyond language” (ibid.: 58). In this paper, I will offer close readings of four narrations of Alzheimer’s disease by J. Bernlef, Thomas DeBaggio, Jonathan Franzen, and Arno Geiger in order to analyze how these literary texts explore the realm between narrative selves and their pending post-narrative conditions. In the analysis of these narrations (some more factual, others clearly fictional)

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published in Dutch, English, and German between 1984 and 2011, I will investigate three different ‘genres’ of Alzheimer’s stories that may be linked to divergent literary approaches to narrating the limits of narration: an autobiographical text that seeks to offer an authentic voice, two firstperson accounts that speak in divergent ways ‘on behalf of’ relatives suffering from Alzheimer’s disease, and a fictional story written from the perspective of a person suffering from dementia. All selected texts are written by male authors and focus on their male protagonists’ loss of memory, reasoning, and autonomy. While the German and the two English texts predominantly offer insights into their characters’ private and family life, the Dutch text unfolds a broader picture, reflecting the interconnection of an individual’s lapse into dementia and the socio-historical experience of Nazi occupation and escape through emigration. I will argue that the four texts offer diverging ways of facing and – to different degrees – narrating the limits of narration that Alzheimer’s disease entails.

‘S PEAKING FROM EXPERIENCE ’: AUTOBIOGRAPHICAL VOICES Thomas DeBaggio’s Losing My Mind: Reinstalling a traditional ‘narrative self’ The valorization of authenticity as well as ethical claims about different groups of people being able to express themselves have led to a rising appreciation of autobiographic illness narratives in contemporary Western culture. In 1999, Anne Hunsaker Hawkins introduced the term “pathography” (Hunsaker 1999; cf. Frank 1995; Couser 1997; Jurecic 2012) for narratives of illness written either by the diseased persons themselves or by family members and caregivers. According to Hunsaker, both autobiographical and biographical pathographies are a reparative attempt to overcome the trauma of illness by the act of narrating and by relating the lived experience to transculturally available myths and metaphors such as illness as a ‘fight,’ ‘journey,’ ‘quest,’ or ‘death and resurrection.’ By providing (narrative) agency and creating some kind of order in the process of storytelling, pathographies have stabilizing and sometimes even healing, redemptive qualities. In the case of dementia, the infrequent autobiographical accounts have become a genre in their own right (cf. McGowin 1993; Henderson 1998; Snyder 1999; Taylor 2007; Demenz Support Stuttgart 2010; Rohra 2011), allowing their authors to speak for themselves, sometimes

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even against the medical profession’s prerogative of interpretation and the paternalistic attitudes of caregivers and relatives. Since Alzheimer’s disease leads to a decline of language production and comprehension as well as of episodic and semantic memory (cf. Macoir and Turgeon 2005), coherent writing turns into a great challenge. Therefore, autobiographical accounts from within the early or even more advanced stages of Alzheimer’s are rare specimens that are hailed as ‘authentic.’ As sufferers, these authors are experts and their texts are testimonies wrenched from the collapse into silence and oblivion. However, both the message they convey and the language they use can and should be analyzed. One of the first autobiographical accounts of living with Alzheimer’s disease was a very impressive book published in 2002 by the American newspaper journalist Thomas DeBaggio. In Losing My Mind: An Intimate Look at Life with Alzheimer’s, he argues that the destruction of himself as an articulate person is the basis for his account: At first I viewed the diagnosis as a death sentence. […] A few days later I realized good might come of this. After forty years of pussyfooting with words, I finally had a story of hell to tell. (DeBaggio 2002: 1)

DeBaggio does not tell a chronological story but weaves three distinct threads into his narrative: a) long-term memories, b) descriptions of his present life that he calls “stories of humiliation and loss […] filled with memory lapses and language difficulties” (ibid.: xi), including quotations from his diaries, and c) excerpts from recent Alzheimer’s research. By alternating between these threads and using different typefaces and layouts, he creates a “complex structure” (ibid.: 211) in a “multilayered style” (ibid.: xi) that draws on modern literary forms (such as collage) and at the same time recalls the multifaceted and net-like structure of the human brain. Unfortunately, most authors of autobiographical accounts of dementia do not specify what kind of assistance they relied on in order to complete their books: Were their stories dictated with the help of technical equipment? Were they told to someone who recorded the narration or who took notes and wrote out the story in full at a later point in time? DeBaggio’s acknowledgements to his family, friends, and his editor resemble the acknowledgment pages that we might read in any other book. Even against the backdrop of a degenerating brain and the breakdown of memory and language, being an author still seems to be synonymous with being in full

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control of communication. Evidently, DeBaggio sees writing not only as a struggle but also as a kind of shelter, an exile, a means and testimony of survival. As long as he manages to cope with words and to create some kind of coherence, Alzheimer’s has not broken him. Many pathographies of dementia tend to rely on conventional techniques of narration (Burke 2007; Hartung 2009). Although such a perpetuation of traditional concepts of authorship may appease the fears of readers who suffer from early symptoms of dementia themselves, it impedes more flexible, encompassing, and indulgent concepts of vulnerable narrative selves and excludes all sufferers who have no ‘success stories’ to tell. On one of the last pages, DeBaggio explains: The struggle to find the words, to express myself, has become unsurmountable. I must be done with writing and lick words instead. I will soon be stripped of language and memory, existing in a shy and unsteady forbearance of nature. I am on the cusp of a new world, a place I will be unable to describe. It is the last hidden place, and marked with a headstone. (2002: 207)

However, these melancholic, even desperate remarks neither confirm that the search for the right words has ‘become unsurmountable,’ nor do they actually constitute final words. In the “Afterword,” which was added to the second edition of the book and reflects its nationwide reception, DeBaggio writes: In my writing room I spend most of my day trying to understand the meaning of the words that spew out of the computer. Many times, when the magic is strong, I sit trance-like and type as fast as I can, making marks on the white paper without knowing where the words will take me. My fingers run away from the words and create a world of their own through which I crawl, looking for the gem of scribble that will bring the words together in an explosion of memory and snappy story. These moments are far away now. There are moments when I sit before the computer and a darkness comes over me and my mind does not move. (ibid.: 209)

This passage evokes a kind of automatic writing, relying on a creativity that does not stem from the author’s brain but from his fingers or the words themselves. Terms such as ‘darkness’ and the description of a paralyzed mind create a strong feeling of defeat. But this evocation of powerlessness and loss of memory and language are indebted to a supreme mastery of words, rhythm, and imagery that undermine the very point they want to convey. Since the text speaks of dementia on the level of content but not of

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form, the disease is described, but not enacted or performed. 2 Losing My Mind is less a story of defeat than a story of victory, or at least of heroic last battles, which not only calls into question the authenticity of the ‘I’ but also the text’s ability to probe the limits of narration. Perhaps narrating the limits of narration comes very close to a contradiction in terms; this holds true especially for people suffering from Alzheimer’s disease who do not aim at exploring the breakdown of language but rather at documenting the survival of their coherent narrative self. For this reason, both from an ethical and an aesthetic point of view, fictional texts can go beyond autobiographical accounts because their authors do not provide insights into their families’ life stories; they are, so to say, ‘on the safe side’ and may hence put their fictional characters – even if they are based on ‘real life experience’ – ‘in jeopardy’ by revealing how frail and vulnerable they are.

‘S PEAKING ON BEHALF OF ’: B IOGRAPHY - BASED NARRATIVES The next two texts are fictional but rely on their authors’ biographical experience to describe the decline of memory and language skills in a close relative from the point of view of a son who witnesses his father’s mental and physical decline. The American and the German first-person narrators offer nuanced descriptions that are not reduced to their fathers’ last years. By narrating the protagonist’s whole life story and striving for a holistic view in both cases, these texts not only differ from the medical discourse but offer counter-narratives to neurological anamnesis and diagnosis, which by definition focus less on individuals than on isolated symptoms and their aggravation. Jonathan Franzen: “My Father’s Brain” and the will as a residuum of the self Jonathan Franzen’s short story “My Father’s Brain” first appeared in The New Yorker in 2001, the same year that his internationally acclaimed novel The Corrections was published. It was later included in Franzen’s collection of short stories How to Be Alone. Opening with the neuropathological report of his father’s brain autopsy, Franzen’s first-person narrator creates a non-chronological and multifaceted text: reflections on medical, neurosci2

Cf. Bastings’s readings (2003) of autobiographical texts by Diana Friel McGowin and Robert Davis.

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entific, and psychological research on the human brain alternate with recollections of his father’s final years, vocational, married, and family life, and retrospectives on the narrator’s own process of becoming an author. Developing in concentric circles, the text focuses on the semantic fields of memory, narrative, and the persistency of personal will as a residuum of the self. It allows for the tension between two conceptions of the brain to unfold: the brain as meat, as it is depicted in the pathologist’s report in the brain autopsy, and the brain as mind or soul. The two conceptions coincide in their competing ideas of what it means to be a human being: I remember […] taking the autopsy report into my bedroom, and sitting down to read it. The brain (it began) weighed 1,255 gm and showed parasagittal atrophy with sulcal widening. I remember translating grams into pounds and pounds into the familiar shrink-wrapped equivalents in a supermarket meat case. […] The organ with which we observe and make sense of the universe is, by a comfortable margin, the most complex object we know of in that universe. And yet it’s also a lump of meat. […] I can see my reluctance to apply the term “Alzheimer’s” to my father as a way of protecting the specificity of Earl Franzen from the generality of a nameable condition. Conditions have symptoms; symptoms point to the brain as meat. And, where I ought to recognize that, yes, the brain is meat, I seem instead to maintain a blind spot across which I then interpolate stories that emphasize the more soul-like aspects of the self. (Franzen 2002 [2001]: 7, 10, 19)

Drawing on the anatomy of the head, Franzen’s narrator employs the physiological term ‘blind spot’ which designates the place where the optic nerve passes through the retina, thereby creating a small area where vision is obscured. In humans and other vertebrates, the brain interpolates this lack within the visual field. The act of interpolation the narrator suggests is not, however, a simple supplement but an addendum and change of register. In order to compensate for physiology, i.e., the constraints of the optic nerve, he does not turn to the capacities of the human brain but to the cultural performance of storytelling, inventing ‘stories that emphasize the more soul-like aspects of the self.’ Of course, telling stories is what authors are supposed to do, but the narrator’s adherence to this division of labor is also a subtle critique of the hegemony of medicine and neuroscience within modern culture, since the act of imagining and narrating is analogous to the ‘down-to-earth’ brain activity of visual perception. A second focus of “My Father’s Brain” is the semantic field of language: the mother’s letter writing, the narrator’s storytelling, and the father’s rather unspecified “narrative interest in life” (ibid.: 12). Franzen’s text is certainly a son’s memoir about his late father, but in a quite explicit

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sense it is also the story of the narrator’s need to tell this story in a way that makes both men irreducible to the materiality of the body and the brain: Seeing my afflicted father as a set of organic symptoms would invite me to understand the healthy Earl Franzen (and the healthy me) in symptomatic terms as well – to reduce our beloved personalities to finite sets of neurochemical coordinates. Who wants a story of life like that? […] The will to record indelibly, to set down stories in permanent words, seems to me akin to the conviction that we are larger than our biologies. (ibid.: 19-20, 33)

Although the narrator concedes that he may misinterpret the “fragments of nonsense” (ibid.: 28) and “a hash of random syllables” (ibid.: 29) that his father speaks, he is positive that even in the final stage of Alzheimer’s disease his father showed an “apparent persistence of his will” that transcended “his loss of his supposed ‘self’” (ibid.: 30). As proof he suggests that his father’s final resistance to food might be understood as an expression of personal autonomy: “[M]aybe, with his remaining shreds of will, he’d resolved to put an end to his unwanted second childhood” (ibid.: 5). Earl Franzen, the short story suggests, did not simply die from Alzheimer’s but from deliberately starving himself to death, celebrating the victory of free will over the decline of both body and brain: What he wanted (in the early years, to stay clear; in the later years, to let go) was integral to what he was. And what I want (stories of my father’s brain that are not about meat) is integral to what I choose to remember and retell. (ibid.: 31)

In his reading of “My Father’s Brain,” Paul John Eakin argues that Franzen resists the medicalization of his father’s condition by positing “a register of selfhood beyond language” and defending “both self […] and story against the materiality of the body” (2008: 58). I would like to suggest that Franzen’s resistance to a pathologization of Alzheimer’s disease relies on introducing his father’s will as a concept that goes beyond both a materialistic view of the body and any simplistic brain-body-split: Although the will may reside in Earl Franzen’s diseased brain, it is performed by his body. The father’s refusal to take food is an act which, despite the ethical question of whether his relatives and the hospital staff should have turned to assisted feeding, has all the cultural underpinnings of political resistance and (selfdestructive) empowerment. The son at least understands his father’s refusal as a powerful language of its own, a language of embodiment (cf. Fuchs 2010; Kontos 2012; Kontos and Martin 2013) that objects to the brain’s prerogative and testifies to the persistence of selfhood and self-expression beyond the old man’s ability to engage in a personal narrative that relies on

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words. Since even the father’s final stage of agony is reconstructed in accordance with the narrator’s decision of what “to remember and retell” (Franzen 2002 [2001]: 31), “My Father’s Brain” represents a kind of joint narration between father and son. Arno Geiger’s The Old King in Exile: Alzheimer’s disease as a vantage point for poetic language Whereas Jonathan Franzen’s short story is a eulogy, The Old King in Exile (Der alte König in seinem Exil3), a book by Austrian author Arno Geiger, can be understood as a kind of narrative chaperonage, telling the story of an older person with Alzheimer’s disease who, despite recurring feelings of despair and disorientation, on the whole still enjoys himself. When The Old King in Exile was published in 2011, both the book and its media coverage suggested that the first-person narrator is in fact Arno Geiger himself bearing witness to his own father’s progressing dementia. Dubbed by its prestigious German publishing company as “[a] book on life. On things that really count” (“Arno Geiger” 2011), the novel – and I will refer to it as a novel although there is no definition of genre in the book itself – can be understood as both a literary text and a political statement in the context of current debates on demographic change, social responsibility, and elder care in German-speaking countries. Unlike many other book covers that rely on muted colors and foggy, melancholic landscapes, this novel on a family father’s Alzheimer’s disease presents a white-haired old man in leisure dress amidst green and sunny foliage, setting the stage for a story of contentment, rural calm, and benevolent nature. I would like to argue that it is exactly this reference to culturally esteemed models such as the idyll that accounts both for the book’s success and its pitfalls with regard to questions of language, narrative self, and the attempt to narrate the limits of narration. Like most books on relatives who suffer from dementia, Geiger’s The Old King integrates the father’s decline (which clearly has a genetic subtext) into a story of peasant life in Western Austria. After a poor but happy childhood, forced participation in World War II, and Soviet war captivity, young August Geiger never again leaves his native village. He becomes a public officer in his local community, builds a home, marries, raises four kids, is left by his young wife (who nevertheless will be engaged in caring

3

Translations from Geiger are mine.

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for him in old age), and remains a silent, slightly stubborn but cherished member of his rural community. While his youngest son Arno used to disapprove of his father’s petty bourgeois disinterest in politics and art, the diagnosis of Alzheimer’s disease reunites the whole family in coordinating responsibilities for caregiving and offers the now successful author, who regularly comes home from Vienna, a second chance to talk and listen to his father. The two become friends in a new way. Geiger does not gloss over his father’s mental shortcomings, his confusion and panic attacks, or the recurring misunderstandings and conflicts that haunt everyday life; however, the book is warm, compassionate, and values an individual whose favorite activity is said to be “coming home” (Geiger 2011: 184). Whereas other biographical accounts try to capture single ‘last words’ or explicitly meaningful statements of people with dementia, Geiger’s The Old King integrates whole pages of question-and-answer passages, using some of them as a powerful means not only to speak on behalf of a man with Alzheimer’s disease but to give him the possibility to speak for himself. The son’s willingness to understand his father’s musings (such as the concern that his mother might be waiting for him) as a helpful fiction and as a story he can take part in eases their daily routine and reconciles the needs of a frail older man with the discerning tastes of an author. Though with a diverging understanding of their fictitious nature, father and son find common ground for interaction and contentment by enjoying their shared fictional stories. As the disease progresses, August Geiger gains an unpredictable new mastery of language: At some point, his fixed ideas disappeared. It was a little ghostly – my father was becoming creative. We had been dealing with his forgetfulness and declining ability for a long time, but now the disease began to generate new powers. (ibid.: 51)

Geiger observes in his father “a great talent for excuses” and a “private logic” (ibid.: 52), which not only demonstrate “the wit and wisdom of August Geiger” (ibid.: 10) but align the father with literary protagonists: “I am a bit of a nobody who has nothing to report. There is nothing left to do.” It was sentences like these, which could easily have been spoken by one of Franz Kafka’s or Thomas Bernhard’s protagonists, that made me think that there were two men in my father: one a man afflicted with Alzheimer’s, and the other a writer. (ibid.: 114)

Of course, this paragraph indicates a certain sense of irony; still, I would like to argue that it is exactly this affinity for canonical literature (old Au-

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gust Geiger as resembling characters from Tolstoy, Robert Walser, Kafka, and Bernhard) that compromises Geiger’s attempt to narrate his father’s struggle with language and meaning. What starts as an expression of solidarity and consideration ends up as an attempt to glorify and ‘poeticize’ his father – and thus himself as well. Like Franzen’s “My Father’s Brain,” Geiger’s The Old King is a text about a son who became an author under the critical eye of a none-too-supportive father. In a strange turn of poetic – or rather belated family – justice, Geiger projects his authorship as finally harmonizing with his father’s own poetic skills and revels in the old man’s support of his son’s work as a writer: Now we were sitting on a garden bench, and he observed me with interest as I took notes in an old school notebook; he grasped the notebook, firmly, so that it wouldn’t slip from my grip as I wrote. He asked: “How is it going with your papers?” “My papers have always treated me well,” I answered. He replied, “Me, too.” (ibid.: 178)

Geiger’s The Old King describes the healing qualities of intergenerational affection and links this ethical stance to a specific social context and rural setting. In addition to setting its protagonist not only in the midst of a caring family, the novel also situates him in a peaceful landscape of abundant gardens, inspiring mountain views, benevolent weather, untroubled walks in the small hometown village, carefree chats with friendly neighbors, and considerate institutional care; all of which makes clear that the novel’s amicable atmosphere relies on a revival of century-old conceptions of the idyll (cf. Böschenstein 2001). In the passage quoted above, the book presents a (pre-industrialized) world in which fathers pass down their wisdom to their sons, books grow out of handwritten notes, and authorship is in a happy continuum with other family crafts and skills. Nothing, not even dementia, can disrupt such an Arcadian place. The Old King in Exile has the qualities of a ‘feel-good read,’ since it makes an ethical statement in favor of mutual recognition and loving care for people with Alzheimer’s disease. The book’s attempt to invest the disease with some meaning certainly allays public fears. However, such an idealization may lead to an ethical and an aesthetic blind spot. Unlike Franzen, Geiger makes little reference to neuroscientific research or medical treatment; the diagnosis ‘Alzheimer’s’ leads to a withdrawal into privacy consisting of family care, the hiring of private nurses from Slovakia (as a cheaper labor force, we might assume), and later the confinement to a nursing home where August luckily meets people from his rural community. An idealized picture like this might either be an incentive to treat people suffer-

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ing from dementia with respect and care, or an emotional burden, since in times of dissolving family ties and cut-backs in the national budget for health care, many readers might lack the emotional or pecuniary means for the same level of individual care as described by Geiger. From an aesthetic point of view, the attempt to cast the person with dementia as a poet who oscillates between fool and prophet – “often he seems to know nothing and understand everything” (Geiger 2011: 86) – recalls earlier literary glorifications of people with mental disorders. Old August Geiger has lost much of his content-sensitivity, but apart from that either his language skills still seem to be quite intact or the literary text presents an embellished version of altered narrative capacities that is far from any limits of narration.

‘GIVING VOICE TO ’: IMAGINARY VIEWS FROM WITHIN ALZHEIMER ’S DISEASE While Franzen and Geiger offer sensitive accounts of their fathers from the point of view of a filial narrator, some fictitious texts try to imagine the “inner lives and ongoing personhood” (Swinnen and Port 2012: 14-15) of people with Alzheimer’s. One of the first and still very convincing attempts is the 1984 Dutch novel Hersenschimmen, published in English as Out of Mind in 1988. To date more than 600.000 copies have been sold in the Netherlands, and the book has become mandatory reading in Dutch training for nursing care. It has also been translated into more than 18 languages. J. Bernlef’s Out of Mind: Alzheimer’s disease as breakdown of language and exile In Out of Mind, novelist, poet, and translator J. Bernlef (a pseudonym for Hendrik Jan Marsman) invites us to participate in the rapid mental disintegration of the 74-year-old Dutch consultant Maarten Klein who had moved with his wife Vera to the Boston area some decades before. From an impressionistic, first-person perspective, we learn over the course of the book how Maarten mistakes his wife first for a former lover and then for his mother, gets lost on walks with his dog, and conflates the present with scenes from his childhood and youth, the Nazi occupation of the Netherlands, and his emigration to the United States. By introducing memories of anguish and deracination, the novel invests the individual fate with an intersubjective historical signature, arguing that the loss of orientation and communicative skills caused by Alzheimer’s may be even more disturbing

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for those who experience them as reenactments of earlier traumatic situations. Throughout the novel, Maarten’s increasing self-alienation is displayed in several mirroring-scenes: Somewhere a door opens. I don’t dare look because I have no idea who is coming. And because I am ashamed to be lying here like a beast in my own muck. I keep my eyes tightly shut. I hear someone retching. Feel how hands strip the pyjamas from my body. They want me to move forward. Must open my eyes now and see an old man in the mirror, an old man with a slack wrinkly belly streaked with shit. I smile with relief. At least that isn’t me! Two women lift me into a bath tub, an old one and a young one. […] They let go of me so I can reach the washstand, I pick up the toothbrush and look in the mirror. There isn’t anyone there. Everything is white: I throw the toothbrush away. They take hold of me. I let myself be led away, away from the white of that mirror. (Bernlef 1988 [1984]: 112-13)

The mirror moment is an established tradition in writing about aging, often designating scenes in which elderly persons feel “libidinally alienated” (Woodward 1991: 67) from their mirror image, which reflects their physical disintegration. Bernlef’s novel conceptualizes a twofold estrangement that goes beyond a mere rejection of the mirror stage of old age: First, Maarten does not recognize his decrepit bodily self (‘At least that isn’t me!’). Then, he sees nothing but a void where his face should be (‘the white of that mirror’). In a subsequent passage, the bewildered old man mistakes his own reflection in a window-glass as a threat to his privacy and in response burns photographs that show the face of the supposed intruder, i.e., himself; hence, the distorted mirror moments lead to (symbolic) selfdestruction. As Maarten’s dementia progresses, this disintegration also begins to affect the protagonist’s verbal capacities and, as a consequence, the narrative structure of the whole novel. The readers who predominantly get Maarten’s point of view throughout the book are confronted with shorter and shorter paragraphs that become fragmented and riddled with omissions: Question of mistake or exchange? … […] men and women in mouse-grey overalls … sometimes distant, sometimes frighteningly near. SUDDENLY THEY ARE STANDING BEFORE ME deportation? … only English spoken here … [… ] the guards are dressed in white with dark blue neckties, both men and women … are clearly under instruction not to listen … I come from the Netherlands, the only one here … vomit – long and plaintive – as if the person can scarcely muster the strength for it … once again someone spewing himself inside out. (Bernlef 1988 [1984]: 138)

Maarten mistakes being taken to residential care with being deported. Thus, the novel adds a political dimension to the seemingly private fate of Alz-

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heimer’s disease by conceptualizing recent incidents as recurrences of disturbing earlier experiences which lead to a breakdown of helpful ‘screen memories.’ Maarten’s incongruous use of first-person pronouns – in the last sentences of the passage quoted above he no longer refers to himself as ‘I’ but as ‘the person’ – signals his self-estrangement and the breakdown of an intact “self of personal identity” (Sabat 2005: 336). Although his subsequent bodily reaction of vomiting may not be legible to the health professionals in the nursing home, we as readers familiar with Maarten’s past can interpret his bodily reaction as resulting from an existential split. Studies in psychology, linguistics, and gerontology have shown that dementia leads to simplified utterances, repetition, and anomia (Macoir and Turgeon 2005). However, this is not what autobiographical narratives want to show, and perhaps it is not even what we as readers want to read in fictional texts. Yet, Bernlef’s novel comes quite close to such an experience, confronting us with neologisms, lapses, and repetitions that we try to unravel because we have come to know the old man’s life story during the preceding 150 pages – and we may even appreciate this narrative experience from an aesthetic point of view. Bernlef offers an alternative to conventional notions of coherence and narrative identity. Of course his poetics, which relies on stream of consciousness, semantic destruction, and alienation, is not really new but rather part of what modern (and post-modern) literature has been about all along (Hartung 2010). This observation leads to a whole series of questions. Are the aesthetic strategies that Bernlef applies in order to narrate the limits of narration convincing, both on an ontological level (Is this really how Alzheimer’s patients talk and think?) and on an aesthetic level (Is there something unique about this story of forgetting or does it just apply an already established set of literary techniques to a newly emerged topic?). Since, as I have argued, autobiographical accounts of Alzheimer’s disease try to establish a narrative voice full of agency that shies away from too much incoherence, we as readers, together with the literary authors of imaginary inner perspectives, are left with what we think dissolution of memory and breakdown of language may feel and look like. These expectations are culturebound, but this also holds true for the way we conceptualize Alzheimer’s disease, try to ‘fight’ it, and treat those afflicted by it.

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C ONCLUSIONS : T HE

ETHICS AND AESTHETICS OF NARRATING ALZHEIMER ’ S DISEASE Every era has its own disease. At the beginning of my paper, I argued that the medical prevalence and the cultural preoccupation with Alzheimer’s come as no surprise in an age that, both on an individual level and in terms of society as a whole, cherishes rationality, the capacity for remembering, and the faculty of speech. Although the selected texts come from three different national contexts and cover a publication period of more than 25 years, they all tell compassionate stories about persons with Alzheimer’s disease for whom these capacities are in decline. They either invest the main character with a strong auctorial voice (DeBaggio), try to ‘read’ his body language (Franzen), speak on behalf of him (Geiger), or imagine a view from within that bears witness to the successive breakdown of perception and coherent language, but not of the protagonist’s self (Bernlef). Since they stay supportive of their vulnerable and more or less disabled, but nonetheless unique protagonists, all four texts provide nuanced accounts of persisting individual selfhood that challenge reductionist biomedical views of dementia. In doing so, the literary texts not only give voice to an ethical stance that supports contemporary approaches in critical gerontology, person-centered care, and the recent narrative turn in gerontological studies (Kenyon, Bohlmeijer, and Randall 2011; Swinnen and Port 2012), but may also enrich scholarly and practical approaches by providing (imaginary) access to the subjective world of those afflicted. If, however, readers are looking for stories with specific narrative qualities that make them ‘feel’ how Alzheimer’s is experienced, DeBaggio and Geiger seem to be less convincing than Bernlef and Franzen, who explore innovative ways of narrating the limits of narration. The neurodegenerative breakdown of memory and language will continue to demand new narrative approaches. The literary texts examined here, above all Bernlef’s and Franzen’s which rely on 20th-century aesthetic devices such as stream of consciousness and semantic destruction, indicate a potential for new modes of narrating Alzheimer’s disease. Acknowledgments I would like to thank Japhet Johnstone for his help in editing the English version of this article.

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R EFERENCES “A Decade after The Decade of the Brain,” February 26, 2010 (https://www .dana.org/news/cerebrum/detail.aspx?id=25802). “Arno Geiger: Der alte König in seinem Exil. Ein Buch über das Leben. Ein Buch darüber, was wirklich wichtig ist,” February 7, 2011 (http://w ww.arno-geiger.de/der-alte-koenig-in-seinem-exil/). Basting, Anne Davis (2003): “Looking Back from Loss: Views of the Self in Alzheimer’s Disease.” In: Journal of Aging Studies 17, pp. 87-99. Bernlef, J. (1988 [1984]): Out of Mind, Trans. by Adrienne Dixon, Boston: David R. Godine. Böschenstein, Renate (2001): “Idyllisch/Idylle.” In: Karlheinz Barck/Martin Fontius/Dieter Schlenstedt/Burkhart Steinwachs/Friedrich Wolfzettel (eds.), Ästhetische Grundbegriffe, vol. 3, Stuttgart: Metzler, pp. 119138. Burke, Lucy (2007): “Alzheimer’s Disease: Personhood and First Person Testimony” (http://www.cdsrn.org.uk/Burke_CDSRN_2007.pdf). Couser, Thomas G. (1997): Recovering Bodies: Illness, Disability, and Life Writing, Madison: University of Wisconsin Press. DeBaggio, Thomas (2002): Losing My Mind: An Intimate Look at Life with Alzheimer’s, New York: Free Press. Demenz Support Stuttgart (eds.) (2010): Ich spreche für mich selbst: Menschen mit Demenz melden sich zu Wort, Frankfurt: Mabuse. Eakin, Paul John (2008): Living Autobiographically: How We Create Identity in Narrative, Ithaca, London: Cornell University Press. Frank, Arthur (1995): The Wounded Storyteller: Body, Illness, and Ethics, Chicago: University of Chicago Press. Franzen, Jonathan (2002 [2001]): “My Father’s Brain.” In: How to Be Alone, London: Fourth Estate, pp. 7-38. Fuchs, Thomas (2010): “Das Leibgedächtnis in der Demenz.” In: Andreas Kruse (ed.), Lebensqualität bei Demenz? Zum gesellschaftlichen und individuellen Umgang mit einer Grenzsituation im Alter, Heidelberg: Akademische Verlagsgesellschaft, pp. 231-242. Geiger, Arno (2011): Der alte König in seinem Exil, Munich: Hanser. Hartung, Heike (2005): “Small World? – Narrative Annäherungen an Alzheimer.” In: SPIEL 24/1, pp. 163-178. --- (2009): “First Person, Third Person, No Other Person? The Cultural Dynamics of Dementia and Old Age.” In: Stephan Gramley/Ralf

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Schneider (eds.): Cultures in Process: Encounter and Experience, Bielefeld: Aisthesis, pp. 143-150. --- (2010): “Fremde im Spiegel: Körperwahrnehmung und Demenz.” In: Sabine Mehlmann/Sigrid Ruby (eds.), “Für Dein Alter siehst Du gut aus!” Von der Un/Sichtbarkeit des alternden Körpers im Horizont des demographischen Wandels. Multidisziplinäre Perspektiven, Bielefeld: transcript, pp. 123-138. Hawkins, Anne Hunsaker (1993): Reconstructing Illness: Studies in Pathography, West Lafayette: Purdue University Press. Helbig, Holger (2005): “Alzheimer-Krankheit.” In: Bettina von Jagow/ Florian Steger (eds.), Literatur und Medizin: Ein Lexikon, Göttingen: Vandenhoeck und Ruprecht, pp. 46-50. Henderson, Cary Smith (1998): Partial View: An Alzheimer’s Journal, Dallas: Southern Methodist University Press. Holler, Claudia/Klepper, Martin (eds.) (2013): Rethinking Narrative Identity: Persona and Perspective, Amsterdam: John Benjamins. Jurecic, Ann (2012): Illness as Narrative, Pittsburgh: University of Pittsburgh Press. Kenyon, Gary/Bohlmeijer, Ernst/Randall, William L. (eds.) (2011): Storying Later Life: Issues, Investigations, and Interventions in Narrative Gerontology, Oxford: Oxford University Press. Kitwood, Tom (1997): Dementia Reconsidered: The Person Comes First, Buckingham: Open University Press. Klein, Christian (2011): “Erzählen und personale Identität.” In: Matías Martínez (ed.), Handbuch Erzählliteratur: Theorie, Analyse, Geschichte, Stuttgart: Metzler, pp. 83-89. Kontos, Pia (2012): “Alzheimer Expressions or Expressions Despite Alzheimer’s? Philosophical Reflections on Selfhood and Embodiment.” In: Occasion: Interdisciplinary Studies in the Humanities 4. --- /Martin, Wendy (2013): “Embodiment and Dementia: Exploring Critical Narratives of Selfhood, Surveillance, and Dementia Care.” In: Dementia 12/3, pp. 288-302. Leibing, Annette (2006): “Divided Gazes: Alzheimer’s Disease, the Person Within, and Death in Life.” In: Annette Leibing/Lawrence Cohen (eds.), Thinking About Dementia: Culture, Loss, and the Anthropology of Senility, New Brunswick: Rutgers University Press.

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Macoir, J./Turgeon, Y. (2005 [1994]): “Dementia and Language.” In: K. Brown (ed.), The Encyclopedia of Language and Linguistics, Oxford: Elsevier, pp. 423-430. McGowin, Diana (1993): Living in the Labyrinth: A Personal Journey through the Maze of Alzheimer’s, New York: Delacorte Press. Mitchell, David/Snyder, Sharon (2001): Narrative Prosthesis. Disability and the Dependencies of Discourse, Ann Arbor: University of Michigan Press. “Presidential Proclamation 6158,” July 17, 1990 (http://www.loc.gov/loc/br ain/proclaim.html). Ricœur, Paul (1983-85): Temps et récit, vols. 1-3, Paris: Le Seuil. Rohra, Helga (2011): Aus dem Schatten treten: Warum ich mich für unsere Rechte als Demenzbetroffene einsetze, Frankfurt: Mabuse. Roy, Wendy (2009): “The Word is ‘Colander’: Language Loss and Narrative Voice in Fictional Canadian Alzheimer’s Narratives.” In: Canadian Literature 203, pp. 41-61. Sabat, Steven R. (2005): “The Self in Dementia.” In: Malcolm L. Johnson (ed.), The Cambridge Handbook of Age and Aging, Cambridge: Cambridge University Press, pp. 332-337. Snyder, Lisa (1999): Speaking Our Minds: What It’s Like to Have Alzheimer’s, New York: W.H. Freeman. Swinnen, Aagje/Port, Cynthia (2012): “Aging, Narrative, and Performance: Essays from the Humanities.” In: International Journal of Aging and Later Life 7/2, pp. 9-15. Taylor, Richard (2007): Alzheimer’s from the Inside Out, Baltimore: Health Professions Press. Vedder, Ulrike (2012): “Erzählen vom Zerfall: Alzheimer und Demenz in der Gegenwartsliteratur.” In: Zeitschrift für Germanistik 2, pp. 274-289. Wetzstein, Verena (2005): Diagnose Alzheimer: Grundlagen einer Ethik der Demenz, Frankfurt: Campus. Woodward, Kathleen (1991): Aging and Its Discontents: Freud and Other Fictions, Bloomington: Indiana University Press. “Zukunftswerkstatt Demenz,” December 10, 2013 (http://www.bmg.bund. de/themen/pflege/demenz/zukunftswerkstatt-demenz/).

The ‘terrifying question mark’ Dementia, fiction, and the possibilities of narrative N AOMI K RUGER

It has been claimed that “in order really to live, we make up stories about ourselves and others, about the personal as well as the social past and future” (Hardy 1968: 5). This claim – I narrate therefore I am – has troubling implications both for people living with dementia and for the way they are viewed, treated, and represented. Raymond Tallis describes the experience of dementia as a diminishing future as well as a shrinking past; the prospect of being confined to “an eternal present,” trying “to make sense of a world that has become […] a permanent and often terrifying question mark” (2012: 21). It is arguable then that dementia is, among other things, the inability to construct stories or to be assimilated by anyone else into a coherent narrative view of life. As a writer working on a polyphonic novel partly narrated by May – a character with Alzheimer’s – I am interested in the narratives about dementia we already encounter, and whether fictional accounts can hope to play a role in creating more space for empathy, imagination, and understanding. Talking about Alzheimer’s, Jolley and Benbow claim that it “commands fear before sympathy, because it has been marketed largely through its most debilitating, demeaning and despairing features” (2000: 117). Indeed, it has been noted that reductive ways of viewing dementia, and the paralyzing fear they inspire, can contribute directly to the quality of care people living with the condition receive (Behuniak 2011: 74). Mainstream articles and

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news reports regularly discuss the impending crisis of an aging population, characterizing it as a looming natural disaster or using the terminology of military warfare. Martin Amis calls it a “silver tsunami” and imagines a “civil war between the old and young” (ct. in David 2010) in the not too distant future. In the first G8 summit on dementia, David Cameron declared a united effort to conquer this merciless enemy: It doesn’t matter whether you’re in London or Los Angeles, in rural India or urban Japan – dementia steals lives, it wrecks families, it breaks hearts and that is why all of us here are so utterly determined to beat it. (Department for Health 2013)

While scientific research into the causes and possible cures for dementia is, of course, significant, it is also important to remember that the ‘us’ that declares the need to ‘beat’ dementia is also the ‘we’ that have to find ways to co-exist with it, and that within this abstract collective group, there will undoubtedly be many ‘Is’ who will one day face a diagnosis themselves. In this article, I will tell the story of my research, using discussions of the writing process, accounts of my experience volunteering in a dementia day center, personal memoir and other sources alongside existing discourses on dementia, identity, and narrative. In structuring my arguments in this way, I am mindful that there are many echoes and connections between memory, narrative, and the way we read. Indeed, it has been pointed out that memory is a constructive and reconstructive process: “[It] is not some essential property which exists prior to our accessing of it, and which we consult and then replace unchanged: it is a textual phenomenon which we interpret and re-interpret every time we remember” (Moran 2001: 250). I hope to show that fictional dementia narratives have the potential to make us more conscious of our fears and expectations, to be aware that along with terror and anguish, there are also important imaginative possibilities.

12 M ARCH 2012 You wouldn’t be here if you weren’t trying to write a book about it. Sitting in the car outside a center for people with dementia. A bright spring day and all the gardens planted up with daffodils and grape hyacinths. People walking into the building, the automatic doors gliding open and shut. You don’t move. You don’t take the key out of the ignition. You watch the clock on the dashboard and anticipate the next digital shift. When the numbers change you’ll be late. This fact should make you move, but you can’t move, not until you’ve sorted out this feeling, this hot, sick fear like a liquid shunt

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pushing everything up, the panic and pressure, so that you can feel it right now starting to pulse behind your right eye. Through the window of the center, you can see someone typing on a computer. An ordinary office with all the usual corporate equipment. It shouldn’t be this hard to get out of the car. Your hands are shaking. You reach around in the well of the back seat for a scrap of paper and a pen. There are empty juice cartons and crisp packets, a whole universe of assorted crumbs. You could be vacuuming the car right now or pushing a trolley round the supermarket or reading books about neuroscience and the intricate processes of memory. It’s not like anyone forced you to come. The only way to deal with it is to work through the fear. Identify it, catalogue it, dilute it with language. At the top of the paper, you write ‘what am I afraid of?’ It doesn’t take long to fill the page. It’s the strange conversations, the delusions and digressions and unpredictability, the lack of understanding (yours and theirs), the shuffling and rocking and hand rubbing, the industrial bins in the bathrooms, the white plastic handles and sitdown showers, the smell of mince and onions, the slow chewing and dribbling, the blankness. Their faces. Their eyes. Thinking back to it now, perhaps it was the strength of my own fear that scared me the most. Until that moment, I had only really encountered dementia in passing. Most of the things I thought I knew about it came from the pages of books. Raymond Carver (2003: 1607) claims the quality that sets some writers apart from their peers is not a greater measure of talent, but the ability to look, to see things differently, and to communicate a unique vision through artistic expression. “At the risk of appearing foolish,” he says, “a writer sometimes needs to be able to just stand and gape at this or that thing […] in absolute and simple amazement” (ibid.). I realized that I needed to observe the condition and the people who lived with it for myself. But there was also something deeply troubling about the idea of ‘gaping’ at someone with dementia. That day, as I sat in the car, wondering whether I had the courage to go inside, I was afraid of a lot of things, but mostly of the things I might be lacking. What if I was faced with a situation and didn’t know how to deal with it? What if I said the wrong thing and caused more distress and confusion? What if I wasn’t really as kind and empathetic as I liked to think?

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On reflection, it seems that the fear I felt in that moment was not really focused on the terrible things I might see, but more on the way I would be seen (or, perhaps, not seen). It reminds me of – and has no doubt influenced a passage at the end of – my novel when Alex, May’s grandson, is thinking about his lack of contact with May, his shameful reluctance to visit her in the care home: But the truth is you don’t want to go. You don’t want to touch her scrawny hands with the veins that look like they might burst through any second. You don’t want to hear her ramble. You don’t want to look her in the eye and know that you mean nothing. You don’t want to be any more invisible than you already are. (Kruger 2014: 179)

This idea of looking and not looking echoes other unavoidable oscillations, most obviously the constant pull between disintegration and completeness, fragmentation and the need for coherence. The form of the novel developed accordingly. May’s short bursts of fragmented narrative take place during one day in the residential home where she lives and are punctuated (or interrupted) by the voices of other characters, all in some way connected to her, telling the stories of their lives at different specific and shifting moments in time. In order to satisfy expectation and complete this particular narrative, then, I feel I must tell you that I did get out of the car. I walked up the path towards the entrance, through the automatic doors, and practiced how I would announce myself to the receptionist. “The manager’s expecting me,” I’d say, “I’m here as a volunteer. I’m writing a book about dementia.” And I’d try to focus on the present practicalities of the situation, the demands of actual experience, and leave the complexities of that declaration for later.

ABOUT : O N THE

SUBJECT OF , CONCERNING Why does this word trouble me so much? It is, as Mark Currie points out, “the problem of aboutness” (2007: 2) – the awareness of the slipperiness of the term and the fact that there is no need for me (nor do I want) to write a book ‘on the subject of’ dementia. I don’t want to document the symptoms and processes of the disease or linger on the tragic deterioration of exceptional brains. I don’t want to use dementia (or any disability) “as a stock feature of characterisation” or an “opportunistic metaphoric device” (Mitchell 2002: 15). The biomedical ‘facts’ of dementia are readily availa-

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ble and fear-inducing enough and although they are, in some ways, inescapable, I am not interested in producing another text that invites the reader to be a pitying voyeur or an amateur neurosurgeon. What aspect of dementia, then, do I want to write about? Perhaps this is the wrong question. A better one might be what position do I want to write from?

ABOUT: USED TO INDICATE MOVEMENT WITHIN A PARTICULAR AREA OR LOCATION IN A PARTICULAR PLACE Where do I locate myself in terms of dementia? Where do texts locate their readers? If the fear of dementia lies (at least partly) in the disruption of the inter-subjective exchange, the potential blankness, the lack of recognition reflected back to us and the implications that has for identity on both sides, then to write ‘about’ dementia may be to try to change the location, the viewpoint, to shift positions deliberately, to ‘move about’ and see what happens. I am interested in exploring the way existing discourses and representations have affected the stories I tell (and have told myself) about dementia. But more than that, in the possibility that writing my own fictional representation could be a way to tell a new kind of story, to challenge, reimagine, re-characterize and destabilize habitual configurations. In this sense, a narrative about dementia (and the account of its production) is ethically complex and teeming with possibility. I agree with David Herman’s suggestion that narrative “is not a cognitive crutch for those who cannot manage to think in more rigorous ways, but rather a basic and general strategy for making sense of experience” (2004: 23). Or, as he goes on to assert, “narrative itself can work to readjust the contextual parameters in terms of which people produce and understand stories” (ibid.: 334). ABOUT : A PPROXIMATELY Is it possible that my fictional project has become an attempt to face my own fears, to face the challenge of dementia, which is, according to David Shenk, the need to “escape the medical confines of disease and to assemble a new humanity in the loss” (2002: 93)? Maybe. Perhaps. In the absence of any strong objections, I’m tempted to say that sounds about right.

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[…] for the other, even when not an enemy, is regarded only as someone to be seen, not someone (like us) who also sees. (Sontag 2003: 65) Reading is a technology for perspective taking [….] Stepping into someone else’s vantage point reminds you that the other fellow has a first-person, present-tense, ongoing stream of consciousness that is very much like your own but not the same as your own. (Pinker 2011: 211) [Artists] are not the reliable servants of any ideology […] they always ask the imagination to move beyond its usual confines, to see the world in new ways. (Nussbaum 2010: 23-4)

S EEING THE WORLD IN NEW WAYS – A CREATIVE WRITING EXERCISE Difficulty: intermediate* Time required: 1 hour (plus research time) Step 1. Before you begin the exercise, choose a new mental perspective you would like to write about and create a character. This could be a person from a different religious, political, or cultural background to you, someone with an extreme personality type, or someone who has a cognitive impairment (amnesia, dementia, depression etc.) or a developmental disability (Asperger’s, autism, cerebral palsy etc.). Take some time to research your chosen subject. Make notes on your character’s background, age, appearance, likes and dislikes, hopes and dreams. Step 2. Imagine you are waiting behind this person in a queue at the supermarket. There is a delay and they strike up a conversation. What do they say? How do you see them? How do you respond? What happens next? Draft the scene in first person from your own perspective. (15 minutes)

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Step 3. Now take a step back and re-imagine the scene. On a new piece of paper, re-write the same encounter but this time from a third-person objective point of view. The narrator can’t have access to anybody’s thoughts. They are not biased towards any perspective. All they can do is report what they see and hear. (It might help to think of them as an invisible customer secretly watching the whole exchange.) (15 minutes) Step 4. Now return to a first-person voice, but this time re-imagine the scene from the perspective of the character you created. How do they view events? What do they think about you? What makes them think? (15 minutes) Step 5. Re-read the different accounts. Which is most successful? Which one did you find the trickiest? What did you learn about the significance of point of view and how it can affect a story? What did you learn about yourself? (15 minutes) Don’t forget! All stories thrive on some form of conflict, tension, or desire! *You may want to extend this exercise by writing the scene from a secondperson perspective. If so, please note that the difficulty level will increase from intermediate to advanced.

Unreliable narrator, a narrator whose account of events appears to be faulty, misleadingly biased, or otherwise distorted, so that it departs from the ‘true’ understanding of events shared between the reader and implied author. (Baldick 2004: 268)

May’s narration in the novel is necessarily unreliable. Her apprehension of the world is associative, full of confusion and disconnection. This is expressed through the only language she has left: non-sequiturs, fragments of song lyrics and literature, bits of memory, parts of conversations, and unwelcome returning traumas. She has sections of broken stories that worry

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her in their demand to be completed. They could be memories or simply confabulations manufactured to fill in the gaps dementia leaves in its wake. Her voice is halting, distorted and faulty: There was a boy, a very strange enchanted boy. They say he wandered very far, very far, over land and sea. A little shy – Go away, I can sing if I want to – and sad of eye – Keep singing and they’ll go away – but very wise was he – don’t look, don’t look, don’t look – (Kruger 2014: 2)

In experimenting with her voice, I wanted to plunge readers into May’s consciousness, and through her words and the form of the text itself (the way each new section is in a different voice, from a different point in time) force them to search backward for connections, and perhaps to feel – even if just for a moment – the lack of coherence, the slipperiness of language. I wanted readers to identify with May’s first-person, present confusion rather than the organized, reflective voice of an outside narrator. There was also an underlying desire to write against existing discourses. Not only is May, as a housewife and mother, firmly outside the realms of medical, professional, and academic privilege, but she is also the first voice that readers encounter in the text, meaning that, at least initially, she sets the tone and linguistic register for the whole novel. May becomes the “horizon against which the next segment takes on its actuality” (Iser 1980: 198); she provides the context in which all other narrators will be understood. In this sense, the decision to narrate in first person was primarily a choice influenced by my concerns about the ethics of representation – a choice that had significant aesthetic and structural consequences. How do you narrate from within a disintegrating consciousness? How do you represent loss of language when language is your only tool? What happens to plot when the character who narrates a story has lost the ability to remember relevant back-story, make connections, and experience the present as a series of linear events? How do you prevent the text from becoming so arcane and chaotic that no one wants to read it? Grappling with these questions involves experiment and linguistic challenge, but this feels, in many ways, appropriate. As Tom Kitwood argues, there is something fundamentally problematic in trying to articulate the way dementia feels: If we try to describe the experience of dementia in ordinary prose, we are using the calm, detached and highly ordered vehicle of language in order to convey impres-

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sions of a state of being that is often fragmented and turbulent. Furthermore, we are attempting to capture in concepts what it might be like to live in a subjective world where concepts are not holding up any more. The further we go into the domain of severe cognitive impairment, the more serious does this problem become. (2003: 71)

In many ways, May is a narrator who simply can’t narrate, and as such, the attempt to make her speak may seem to be nothing more than foolishness or arrogance. Using language to represent her consciousness in a form so bound with concepts she can no longer grasp, so dependent on the ability of readers to remember, so ultimately diachronic and linear (if only at the level of words and sentences moving onwards to their inevitable endpoint), is surely, to use the violent idioms of disease and cure, fighting a losing battle. I am not alone in the attempt, however. Over the last decades, several writers have attempted to narrate dementia from the ‘inside’ (cf. Johnson 1971; Bernlef 1989; Thorup 2003; LaPlante 2011; Healey 2014). Add to this the proliferation of short stories, plays, films, TV dramas, poetry, memoirs, and blogs that have emerged around this subject in recent years and it seems clear that dementia can, in some senses at least, be productive. This obstacle to narrative has become the subject of narrative. As well as fear, then, there is also (at least creatively) a kind of desire at work, too, a sense in which dementia is a spur to narrative production and inventiveness. It is a challenge; a reason to experiment, and in some cases a devise to be exploited. And the attempt to represent May’s experience of dementia in first person is not simply about allowing readers to feel what she feels. Any attempt to disrupt narrative coherence will also inevitably foreground readers’ abilities to use complex memory processes, make connections, and fill in gaps. A narrative that attempts to fuse reader and character may create a kind of temporary empathy, then, but empathy is not necessarily an end in itself: […] getting on the inside of someone else – becoming imaginatively at one with them – will not yield us knowledge of them unless we retain our own reflective powers in the process. Pure empathy is at odds with the critical intelligence required for understanding. (Eagleton 2012: 62)

Furthermore, as critics discussing the forgotten or silent ‘other’ have pointed out, attempting to represent the un-representable is not so much about making unseen things visible or finding what is lost and forcing it into the light, rather, it is providing conditions that encourage a conscious awareness that something has been ignored in the first place. It is drawing attention to the fact that some things are simply unsayable, bearing “witness to

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the differend […] [by] linking [phrases] in such a way that the inexpressibility of the inexpressible is referred to” (Boeve 2011: 268). Rather than simply offering readers the chance to ‘be’ May, I hope the significance of the representation of May’s experience (and its contrast and connection with other voices) is the attempt to side-step the third-person, objective medical discourses that surround dementia and move beyond the overarching metaphors and reductive master-narratives that can be so damaging. In this sense, May is not her diagnosis. She is an individual who is affected by dementia in a particular way at a specific time. As Margaret Lock argues, “no disease is ever exactly the same in two bodies; what you really have to ask is what is the relationship of dementia to aging in the particular person in front of you” (2013: 63). This immersion in her first-person consciousness – however short-lived – may encourage readers to be more conscious of the way they position themselves (or are positioned) in terms of the condition. It may also enable them to sense that “there is something unrepresentable” (Lyotard qtd. by Boeve 2011: 269) and, by drawing attention to this lack, prompt some important questions and temporarily de-stabilize the neat construction of self/other: Always these papers, papers, papers, papers

full of words

but the words don’t behave

nothing stays put and they bring the tea with no money to pay don’t want to be washing the dishes. No money, no words, no people who know how it is – When you lose things the first thing to do is to think – to trace your steps. Soft shoes – So the steps can’t have been far and they can’t have been wet. Home might be near or it might not, Dad might be coming or he might not and if he isn’t then there must be a reason and they must have found out about the boy and they might be keeping me away from him on purpose. (Kruger 2014: 62)

As Frank Kermode asserts, all “narrators are unreliable [but] some are more expressly so than others” (1983: 140). Perhaps in fiction in general, it might be true to say that the expressly unreliable narrators (or at least the narrators we perceive to be more unreliable than ourselves) are more readily accepted, more valued, more likely to be listened to than in real life. And since language and the ability to articulate become more and more restricted as dementia progresses, it may be that fictional accounts of dementia are the only possible way we have to imagine what it might feel like to be so marginalized, bewildered, and neglected.

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The novel is arguably man’s most successful effort to describe the experience of individual human beings moving through space and time. (Lodge 2002: 10)

The dementia day center where I volunteered was nicer than the average care home. It was a new building, specially designed to give people with a dementia diagnosis a change of scene and their carers a few hours of respite. There was a sun-drenched conservatory, a beauty parlor, an open-plan kitchen area for staff and service users, a dining room, and several clean and well-equipped bathrooms. Every room was full of light. A landscaped garden was constantly visible from one side of the building, complete with soothing water features, paths, and shrubbery. There was a poly-tunnel for garden activities even when it rained, free-range chickens wandering around, and bird feeders attached to windows with transparent suction cups so that at certain moments it looked like the sparrows were trying to peck their way through the glass, desperate to join in with various therapeutic craft groups. One man was obsessed with the car park. He wanted to see what was outside. Every time a new vehicle pulled into a space, he needed to know who was arriving. It seemed like he was constantly trying to locate himself and make sense of the strange place he found himself, never satisfied, never content. The gardens were always open. They were safe and secure and there were few locked doors in the building. He could have explored and found his own way around. He was often encouraged to, but he didn’t. He wanted a guide. “Please,” he’d say to anyone who’d listen, anyone who seemed like they might have some authority, “please will you come.” Sometimes they did, but often it just wasn’t possible. It happened in the middle of lunch, in the middle of painting sessions, during life history group, and especially when staff were trying to have a quick cup of tea. If he didn’t get an immediate positive response, an arm to lean on, someone who was willing to go with him in the direction he was facing, the pleas would get louder, more intense, almost unbearable. He ground his teeth and walked in circles. He ran his hands through his hair. His face was filled with panic. “Please, just listen to me. Please, I need to go. Will somebody please just come?”

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The intensity in his voice was enough to stop me in my tracks. As a new volunteer, I had to take my cues from other staff with more experience. Nine times out of ten they put him off, attempted to distract him. They would ask him about his family, his football team, his hometown. It worked for a while. He answered questions briefly, factually, always on the surface. He had a reasonable grasp of semantic memory, names and places, but almost no ability to talk about any episodic, particular experiences or the emotional significance of things. Soon enough, he was frustrated and back to his obsession. Sometimes, when the begging seemed interminable, they just pretended not to hear. There was a kind of cruelty in this, but after a while, I could understand why it happened. On occasion, in desperation, I even did it myself. One afternoon, when most of the service users were listening to music, singing, tapping their feet and eating biscuits, I noticed him alone in the corner with his hands folded primly on his lap. I sat next to him. He sighed. He seemed defeated. He looked right at me and pointed to himself, his head, his chest. “It’s just that this in here and here – I can’t find any of it. It’s all been bloody messed up.” I couldn’t think of anything to say. Luckily, he didn’t seem to need a response. It was such a strange, sad, quiet moment, and it made me wonder if it wasn’t the memories he wanted to find or discuss. It was their absence. He wanted to talk about the loss. The temporal landscape of the novel is influenced by this sense of loss and the feeling of lost-ness it produces. Thinking about May’s position in and experience of time had unexpected re-percussions for the structure of the book. The past does intrude on May’s experience of reality, but her grasp of it is increasingly unsure and, because of this, it is becoming impossible to imagine the future. The present moment, in all its dis-jointed confusion, is the only thing she has left. The decision not to try to represent May’s deterioration over the course of the illness, but instead to narrate a present-tense, circadian account of her experience in the care home on one particular day meant that I could avoid producing a text that documented a blow-by-blow account – as a blub writer might have it – of her ‘tragic descent into darkness and silence.’ On a practical level, it also meant that I could avoid the inevitable entropic pull

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of linguistic chaos and, ultimately, the blank page. May’s voice, then, is the spine of the book, a present absence, a gravitational field, a broken chain of narratives that – on one level at least – move forward in time in an ordered and linear way. All she can give the reader is fragments. In some senses, she exists most strongly as an absence in the text, but an absence that weighs on other characters and won’t let them rest. They, in turn, try to fill her loss with narrative, so that she is everywhere and nowhere at the same time. The voices that surround her are necessarily more articulate and coherent, but I hope there is also a sense of equality in their juxtaposition, their first (or second)-person, present tense narrations, their fluid and sometimes unconscious movement between memory, reality, and imagination, their struggles to make sense of things and place themselves in the world. The following extract takes place after Alex remembers going to church with May, the time they spent together, and ambiguous feelings he still has towards religion: Sitting on the bed with the laptop, surveying the wreckage, the state of my bombsdropped-pig-sty-hovel. Staring at the screen with the cursor blinking in the Google search box. The whole world at my fingertips and I can’t think of a single thing to type. She’s gone and I can breathe, but I can’t breathe. I don’t know why it’s like this. I don’t know why I’m like this. I don’t know what I want. I don’t want anything. Push the laptop under the bed and climb in under the duvet, right under so that I can’t see any light, so that I’m breathing in my own air, nails into the palms of my hands, elbows into my stomach. It starts in my head. The words: Verily I say unto you, even as I am. Come follow me. Come. Follow. Then I whisper it: Please God, please God, please God, and outside a bird is singing and the light must be going and the air is getting hotter under here and please God I don’t know how I’ll ever move from this spot. (Kruger 2014: 140)

In this way, May’s difference becomes a matter of linguistic and temporal degree rather than a matter of kind. Including these other voices was never just a way to make the novel more tame and readable (although that is not an insignificant consequence), it was always my intention to situate May among other characters, as part of a community, as a person who is not just a collection of symptoms to be examined but someone with a social history and influence. Her identity may be disintegrating, but it is also intersubjective. It depends, in great measure, on the storytelling, the memories and imaginations of other people. Our identities, then, are not static or hermetically sealed. Our “lives are misunderstood if we conceive of them as separate units, or isolated stories disconnected from the lives of others”

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(Small 2007: 116). The other ‘Others’ in the novel may be more confident to speak of themselves, but their narratives are also more temporally unpredictable. Their chapters jump from voice to voice, back and forward in time, with no immediately discernible order. May, it seems, is the only constant connective. The disrupted chronology of the novel echoes May’s mental struggle and her inability to narrate a coherent story, which in turn parallels the difficulty for readers to produce connection and completeness from the fragments they are given. Or, as my supervisor commented, “the novel consciously resists closure, finality and smooth integration, even as it continually acknowledges our readerly desire for all of those traditional comforts.” So perhaps, as a writer as well as a volunteer, I am refusing to take someone’s arm and lead them in the direction they are desperate to go. Perhaps I have just put my fingers in my ears and refused to listen. And if, as all the helpful writing guides would have it, stories thrive on tension, conflict, and desire, then that willful refusal to comply might be at the heart of what makes the novel thrive. Perhaps the most significant underlying desire this text seeks to communicate (if it can be said to seek to communicate anything) is the fundamental longing for narrative itself, the unconscious expectation of it, and what happens when that is continually frustrated, and what that could possibly mean for anyone who seems to exist outside its boundaries.

For we dream in narrative, day-dream in narrative, remember, anticipate, hope, despair, believe, doubt, plan, revise, criticize, construct, gossip, learn, hate and love by narrative. In order really to live, we make up stories about ourselves and others, about the personal as well as the social past and future. (Hardy 1968: 5) […] [I]f there is severe loss of capacity, we may do better to reject the narrative view altogether. That is, we may find it kinder, and more in keeping with the person’s ability to give shape to their own life, to place much less emphasis on narra-

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tive, preserving it only weakly, as a dotted line to indicate the fact of an ongoing life, but faded powers of self-direction. (Small 2007: 204-205) […] [N]arrative itself forms part of the cultural equipment by means of which humans seek, with more or less success, to transform unknown territories into negotiable places. (Herman 2011: 265)

N ARRATIVE : A

SPOKEN OR WRITTEN ACCOUNT OF CONNECTED EVENTS ; A STORY . David Lodge refers to the “essentially narrative nature of human consciousness” (2002: 31), and memory, it has been argued, “narrativises us; it turns us into characters in a novel. It makes motives and context matter” (Fernyhough 2013: 239). So what does this mean in terms of dementia? If, as has been claimed, our lives are experienced (or at the very least remembered) as narratives, and if this encourages us to see ourselves as characters in an ongoing story – or as protagonists in a quest narrative moving onwards towards a triumphant denouement (MacIntyre 1985: 218-219) – then dementia constitutes a significant disruption to our identity, our sense of order, and our sense of what it means to be human. Not being able to make connections between past, present, and future disrupts the facility to tell stories and make meaning. As Charles Fernyhough points out, “if you cannot remember you cannot update your self-image as your life moves on. You are caught between two identities without the ability to really inhabit either” (2013: 191). It could be argued, then, that fear of dementia is linked to the way the disease challenges coherent narrative – the unimaginable terror of an existence without ‘story’ – and the implied chaos this brings, the inevitable break between soul and body. Being caught between two identities – the prospect of ‘losing ourselves’ – may be frightening, but it is also something familiar. In a less permanent and noticeable way, this duality is something that is experienced every time we remember who we used to be and every time we attempt to enter into another consciousness by reading fiction. Awareness of our own narrative expectations and the suspect nature of many of the narratives that already surround this subject can be valuable in thinking about how to approach this condition. Dementia reminds us that

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we cannot all, as one critic would have it, be “virtuoso novelists [….] [who] try to make all of our material cohere into a single good story” (Dennet 1998: 1028-29). Some of us may find it more useful to consider life in terms of more fragmentary, episodic structures. Indeed, when thinking specifically about people with dementia, it may be more humane, if not imperative, to rein in our narrative expectations (Small 2004: 204-205). And alongside the critics who maintain that having a narrative outlook is essential for human flourishing, there are others who question whether it is “really legitimate to reduce our selfhood to that which can be narrated” (Zahavi 2007: 191). Galen Strawson argues that “there are deeply nonnarrative people and there are good ways to live that are deeply nonnarrative” (2004: 429). He distinguishes between people who are naturally diachronic and narrative in outlook – having an awareness of their lives as gaining meaning over time and continually attempting to impose “a unifying or form-finding construction” (ibid.: 440) onto experience, and those who have a more episodic apprehension of the world. It is not that the past is irrelevant for episodic people, Strawson contends, but that often “the past informs the present without being present or alive as the past” (ibid.: 432). The overwhelming desire to turn a life into an autobiography is not, whatever some people may suggest, a universal urge. This more momentary, impressionistic way of being is, Strawson declares, different rather than inferior, and offers many advantages and opportunities for contentment. All in all, an episodic life adds up to “an assorted basketful of understandings” rather than a coherent, unified “almost inevitably falsifying narrative” (ibid.: 448).

Living with dementia is by nature an associative, episodic, momentary existence, and as such, including it as the central thread of a novel might seem rather misguided. Why write a novel at all? Why not a collection of poetry or a temporally transcendent music composition? One of the questions I have come back to again and again over the course of this research is whether the representation of May’s lack of narrative agency through narrative can offer any insight into how narrative works, how we negotiate the reading process and perhaps take the ability to make connections for granted. If it is the case that many of us are hardwired to seek connections and coherence, and if Strawson is right in suggesting that many of the claims

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about self and narrative result from the arrogance of naturally diachronic people assuming that everybody must experience life in the same way as they do, rejecting a popular narrative form as a medium would be foolish. Stepping outside narrative may be, for many of us, an impossibility (ibid.: 439). Indeed, stories may be the most effective way we have to explore these ideas, to become aware, to begin to understand. If narrative seems to separate us from people with dementia then it also has the potential to bring us together. Structuring our lives into beginnings, middles, and imagined ends can bring the false sheen of authority and meaning to our past experiences and future hopes, but as Charles Fernyhough argues, we cannot ever really claim to be in possession of the truth because when memory “leaves the world of fragments and un-integrated emotions, it also becomes more prone to distortions. The more memory becomes organized, the more slippery it becomes” (2013: 113). All we have, then, are lesser and greater degrees of self-deception. I am not seeking to trivialize or efface the real difficulties of dementia by situating May’s voice alongside other characters who have moments of confusion, who know what it feels like to have a word on the tip of their tongue just out of reach, who possess (or rather fail to possess) slippery, questionable memories. Rather, I want to create a textual (and textural) environment that brings these parallels to the forefront, that allows awareness. When we really consider the functions and possibilities of narrative, it becomes clear that clarity is elusive and that the reading process is defined as much by indeterminacy as the need for cohesion. As Barthes asserts, we are a faulty, forgetful, unreliable audience, and it may be precisely these imperfections that drive us to read in the first place: Forgetting meanings is not a matter for excuses, an unfortunate defect in performance; it is an affirmative value, a way of asserting the irresponsibility of the text, the pluralism of systems. […] [I]t is precisely because I forget that I read. (Barthes 1975: 11)

We are positioned at different points on a common continuum, rather than sitting on either side of a solid dividing line. Selfhood is not “an ordered narrative” (Currie 1998: 107) and perhaps, for many of us, it is only other forms of narrative or story that can begin to make it bearable.

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STORY: 1. AN ACCOUNT OF IMAGINARY OR REAL PEOPLE AND EVENTS TOLD FOR ENTERTAINMENT. 2. AN ACCOUNT OF PAST EVENTS AND EXPERIENCES. 3. INFORMAL: A LIE. Let me tell you a story. Somewhere, far away there’s a village. I dream about it. There are trees and green spaces and flowers. A central square with a trickling fountain, metal tables with parasols, a café, a shop. Places to sit and winding gravel paths to walk down. There are festivals and markets and community events. The sun is shining. There’s always something to do. You could arrive here as a complete stranger and feel a nagging sense of déjà vu. You could almost feel that you belonged. Of course, I have known other villages. I used to live in one. When I was twelve, my sister had a paper-round and sometimes I had to fill in for her on a Monday night because she played the flute in the school orchestra and couldn’t get back in time to do it herself. I used to fold each copy of the Lancashire Evening Post into three and walk up the drives and post them through the letterboxes. And I can still remember the feeling in winter, when it was almost dark and my fingers were cold and nipped by the stiff metal teeth of the houses and the lights came on in living rooms, behind curtains, spilling through the fan-lights above wood-paneled front doors. On those occasional afternoons that seemed to seep imperceptibly into evening, I had a powerful sense of being outside of everything. And although I was, literally, an outsider, it was deeper than that, a strange kind of envy and melancholy and wonder, all at the same time. Perhaps, in some other language, there is a word for it. Something untranslatable, something that means all those things at once. Those chinks of light seemed to hint towards warmth and familiarity and impossible happiness. I knew from experience (and a regular diet of soap operas) that family life was unlikely to be peaceful for long, that most families didn’t exchange pleasantries around the dinner table or manage a whole game of Monopoly without someone storming off and slamming a door, that most families, in fact, didn’t even manage to stay together at all. Somehow, though, this particular street, in its unknowable proximity, had me convinced that things could be different. The people behind those particular curtains were a different species. In my imagination, they were characters in a kind of hidden utopia. I would never be invited in, but I was close enough to feel the magic.

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If you’d asked me what super-power I wanted back then, I would have said invisibility. Being able to walk through walls. I didn’t necessarily want to see the people themselves, just inspect the evidence of them, their debris, the manifestations of their mystifying, evocative habitats. Imagine if we had those powers right now, and I took you to that other village and we went on a tour, just to see what we could see – just to take a look. We wouldn’t need to walk through walls because the doors aren’t locked. There are verandas and balconies and big open-plan kitchens, and inside there’s color everywhere. Books and photographs and houseplants and the smell of cooking. Every apartment is different. In one room someone is playing the piano and in the adjoining kitchen three people are peeling potatoes around a rustic farmhouse table. There is nothing corporate about it, nothing institutional. It’s the kind of place that gives you hope. Come in closer. Here’s the secret. This isn’t a fantasy. I didn’t make it up. The village exists. Someone, somewhere designed it expressly for people with dementia, they imagined it and made it real. On one level, at least, this place is not a fiction. David Charter, writing for the Times, describes it thus: It has been called the village of the future, but in Hogeweg, everyone lives in the moment. The pretty streets and squares of this experimental Dutch community, with its cafés, restaurant and hairdressers, have been carefully designed to reassure, some would say hoodwink, the 152 residents. Everyone who lives here has severe dementia and few either know or care that their village is a secure nursing home where the friendly woman on the supermarket till, the restaurant manager and the helpers who cook meals are all trained in the specialist care of the elderly. (2012)

Is this fairy tale utopian village, as some people have claimed, an unethical deception, a living version of the Truman Show, or a sinister kind of “cognitive apartheid” (Tallis 2012: 19)? When I look at the photographs of residents sat in homes that look like homes, engaging in real-life tasks, rather than tokenistic activities, enjoying the illusion of freedom and autonomy, I can’t help thinking of other nursing homes I have visited, I can’t help thinking about how different it is from what I’ve come to expect. The residents are treated as if they still matter. They are treated as though they have a future. Indeed, Janice Turner, a journalist who cared for a father with dementia was surprised by her own reaction to Hogeweg. “The very fact that I can imagine myself here at all,” she says, “is extraordinary” (Turner 2012: 41). It is a fiction, then, a false narrative, a deception even.

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But a humane one. And as Stephen Pinker asserts, it “would be surprising if fictional experiences didn’t have similar effects to real ones, because people often blur the two in their memories” (2011: 711). When it comes to dementia, it may be true to say that fiction and stories can be more than escape and entertainment, more than accounts of past events, more than reductive master-narratives, more even than lies and deception. Stories can also offer new ways of seeing, new positions to see from, and even, for the residents of Hogeweg, new ways to live. Indeed, it is possible that being aware of the difficulty of narrative for people living with dementia could lead us to enter more consciously into our own story-making, and become more aware of the ways we impact on the identity of others: […] [T]o turn away from the task of sustaining the characterisation identity of the person with dementia suggests a failure to acknowledge the extent that the construction of the identity before the illness was a product of others as well as of the person themselves. Consistency suggests that what was begun by others should be continued by them. (Radden and Fordyce 2006: 82)

And this is true of May as well. Since all she can give us are fragments, it is through the memories and experiences of other characters that she is, if not completed, then at least deepened, shaped and complicated. This is, of course, ethically complex. Telling someone else’s story, even with their help or consent, is not something to be taken lightly. Especially if they are unaware. Even if they are fictional. And, bearing this in mind, we will all (consciously or not) make decisions about whether we accept this challenge, whether we are willing to be co-authors, what kind of stories we want to tell, and what kind of narrators (and readers) we are willing to be.

12 APRIL 2062 Stop fighting. Just close your eyes and let it all go. Oh Lord my God, when I in awesome wonder, consider all the worlds thy hands have made – Consider this, though. I made a world. A universe. There were people in it. Sometimes they wouldn’t behave. I can’t always get to it now. I can’t always separate it from everything else. All the real things. In the darkness, when I’m this tired and I can’t sleep, everything gets mixed up and I can’t get to the truth of it at all.

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A long time ago I used to be ill. A different kind of ill. So bone-tired I had to crawl up the stairs and stop in the middle for a rest. I remember the feel of the carpet under my fingers. On the landing there was a coloured glass window and in the afternoons the sun came through the sails of the ship, through the ripples of the glass sea and streamed out in reds and blues and greens and I sat there and soaked it in like a tonic. I dozed for six years. I was less awake than I am now. I wasn’t a baby. There were no excuses. It sat behind my eyes, this nameless thing, and made everything blur. The right words wouldn’t come. I was drugged but no one could find the medicine. And May said, ‘We all get tired sometimes but some of us just have to cope with it. Some of us don’t get to lie on the sofa and opt out of life.’ And I waited until she was gone until I cried because I didn’t want her to know how much she’d hurt me and it was all so impossible to explain. No, that couldn’t have been May. I made her. It must’ve been somebody else. In spring there was a woodpigeon roosting in the chimney and I could hear it calling. The sound carried down to the living room even through the fitted gas fire. It was trying to tell me something (my toe bleeds, betty), and someone had taped cloth over its mouth (birds don’t have mouths), it was trying to clear its throat and get the message through. Or it was just another lullaby to tease me. Never-ending. A reminder that I’d forgotten what it meant to really be asleep. I grew roots, they pushed down and seeped into the fabric of the sofa, got tangled between the springs like they were holding me down, keeping me from moving, keeping me halfway in and halfway out of everything there ever was and could be. The glass, my dear, is always half full. Except when it’s half empty. Except when you don’t get to wander through the forest glades because you can’t move, except when looking down from lofty mountain grandeur is unthinkable, except when the only time you hear the birds sing sweetly in the trees is through an open window on a summer morning before you drift back into sleep and miss the best part of the day.

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I see the stars, I hear the rolling thunder – I smell the storm. The sound of rain on the roof of the greenhouse. The way the blossom fell down from the trees next to the prison and clogged all the drains and lined all the pavements with pink. Grandpa’s tomatoes always smelt like soil and chemicals. The grapes were too sour to eat. I built a helter-skelter out of wet sand in the corner of the garden and sent Kinder-egg cars down the ramp one after another. There was someone called Alex and someone called May. There were little blue flowers in all the paving cracks. I picked the mint leaves just to rub them on my hands and smell them, and they were furry underneath. I used to pretend I was presenting a cookery show on TV. I don’t know where any of this belongs. I don’t know how to put it all in order. Sometimes you think things are lost but they’re not. Sometimes, if you’re lucky, you find a ten pound note in the pocket of a jacket you haven’t worn for a while and it feels like the universe is smiling down on you (then sings my soul), it feels like fate is trying to give you a gift. I could open my eyes but I’m not ready. Not asleep, not awake, not here or there. I can’t feel anything and that could be good or bad. I don’t even want to try and move. I would like to separate the bits that are real. Just so I don’t say something stupid, so I don’t make a fool of myself if someone asks (why would they ask?). The medicine must be strong. The medicine must be making me forget. I want to remember the story (only the one?), because I think I would like to try to tell it all again.

R EFERENCES Baldick, Chris (2004): Oxford Concise Dictionary of Literary Terms, Oxford: Oxford University Press. Barthes, Roland (1975): S/Z, Trans. by Richard Miller, London: Jonathan Cape. Behuniak, Susan (2011): “The Living Dead? The Construction of People with Alzheimer’s Disease as Zombies.” In: Aging & Society 31, pp. 7092. Bernlef, J. (1989): Out of Mind, Trans. by Adrienne Dixon, Boston: David R. Godine.

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Boeve, Lieven (2011): “Jean-Francois Lyotard on Differends and Unrepresentable Otherness: Can God Escape the Clutches of the Christian Master Narrative?” In: Culture, Theory and Critique 52/2-3, pp. 236-284. Carver, Raymond (2003): “On Writing.” In: Ann Charters (ed.), The Story and its Writer: An Introduction to Short Fiction, Boston: Bedford/St. Martins, pp. 1606-1610. Charter, David (2012): “For the Alzheimer Victims Lost in Time, a New Village of Care.” In: Times, March 31 (http://www.thetimes.co.uk/tto/ news/world/europe/article3370109.ece). Currie, Mark (1998): Postmodern Narrative Theory, Basingstoke: Macmillan. --- (2007): About Time: Narrative Fiction and the Philosophy of Time, Edinburgh: Edinburgh University Press. David, Caroline (2010): “Martin Amis in New Row over Dementia Booths.” In: Guardian, January 24 (http://www.theguardian.com/books/ 2010/jan/24/martin-amis-euthanasia-booths-alzheimers). Dennet, Dan (1988): “Why Everyone is a Novelist.” In: Times Literary Supplement 4459, September 16-22, pp. 1028-1029. Department of Health (2013): “UK Calls on World to Tackle Global Crisis of Dementia,” 11 December (https://www.gov.uk/government/news/ukcalls-on-world-to-tackle-global-crisis-of-dementia). Eagleton, Terry (2012): The Event of Literature, New Haven: Yale University Press. Fernyhough, Charles (2013): Pieces of Light: The New Science of Memory, London: Profile. Hardy, Barbara (1968): “Towards a Poetics of Fiction.” In: NOVEL: A Forum on Fiction 2/1, pp. 5-14. Healey, Emma (2014): Elizabeth is Missing, London: Viking. Herman, David (2004): Story Logic: Problems and Possibilities of Narrative, Lincoln: University of Nebraska Press. --- (2011): The Emergence of Mind: Representations of Consciousness in Narrative Discourse in English, Lincoln: University of Nebraska Press. Iser, Wolfgang (1980): The Act of Reading: A Theory of Aesthetic Response, London: Routledge. Johnson, Bryan S. (1971): House Mother Normal: A Geriatric Comedy, London: Collins.

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Jolley, David J./Benbow, Susan M. (2000): “Stigma and Alzheimer’s Disease: Causes, Consequences and a Constructive Approach.” In: International Journal of Clinical Practice 54/2, pp.117-119. Kermode, Frank (1983): The Art of Telling: Essays on Fiction, Cambridge: Harvard University Press. Kitwood, Tom (2003): Dementia Reconsidered: The Person Comes First, Maidenhead: Open University Press. Kruger, Naomi (2014, unpublished PhD Thesis): May (novel-in-progress), Lancaster: Lancaster University. LaPlante, Alice (2011): Turn of Mind, London: Harvill Secker. Lock, Margaret (2013): The Alzheimer Conundrum: Entanglements of Dementia and Aging, Princeton: Princeton University Press. Lodge, David (2002): Consciousness and the Novel, London: Random House. MacIntyre, Alasdair (1985): After Virtue: A Study in Moral Theory, London: Gerald Duckworth. Mitchell, David (2002): “Narrative Prosthesis and the Materiality of Metaphor.” In: Sharon L. Snyder/Brenda J. Brueggemann/ Rosemarie Garland Thompson (eds.), Disability Studies: Enabling the Humanities, New York: Modern Language Association of America, pp. 15-30. Moran, Joe (2001): “Aging and Identity in Dementia Narratives.” In: Cultural Values 5/2, pp. 245-260. Nussbaum, Martha (2010): Not For Profit: Why Democracy Needs the Humanities, Princeton: Princeton University Press. Pinker, Steven (2011): The Better Angels of Our Nature, London: Penguin. Radden, Jennifer/Fordyce, Joan (2006): “Into the Darkness: Losing Identity with Dementia.” In: Julian C. Hughes/Stephen J. Louw/Steven R. Sabat (eds.), Dementia: Mind, Meaning, and the Person, Oxford: Oxford University Press, pp. 71-88. Shenk, David (2002): The Forgetting, London: Flamingo. Small, Helen (2007): The Long Life, Oxford: Oxford University Press. Sontag, Susan (2003): Regarding the Pain of Others, London: Penguin. Strawson, Galen (2004): “Against Narrativity.” In: Ratio XVII December 4, pp. 429-452. Tallis, Raymond (2012): “An Imitation Life Is Better than No Life at All.” In: Times, April 3, p. 21. Thorup, Kirsten (2006): Ingenmansland, Stockholm: Norstedts.

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Turner, Janice (2012): “A Second Life.” In: Times Magazine, June 16, pp. 35-41. Zahavi, Dan (2007): “Self and Other: The Limits of Narrative Understanding.” In: Royal Institute of Philosophy Supplement 60, pp.179-202.

II. ART, ARTISTIC APPROACHES, AND FILM

Dementia on the canvas Art and the biopolitics of creativity S COTT S ELBERG

There is a developing trend in research and public interest in the confluence of art and Alzheimer’s disease.1 Indeed, for scientists and a weary public increasingly desperate for ways to combat the disease, art represents a hopeful site of progress, despite only modest advances in understanding exactly how art and dementia intersect. For many, creative expression allows for the performance of the very individuality that Alzheimer’s seems to threaten, but it does so in a progressive temporal register antithetical to the pathologized memorial consciousness generally stigmatized as loss. A fundamental premise of this essay is that Alzheimer’s is useful for art, even though in the current conjuncture it is instead art that is perceived as useful for understanding and treating Alzheimer’s. Ideological ties between creativity and Alzheimer’s personhood remain relatively undisturbed despite widespread social investment in creativity’s value. In what follows, I map out some of these investments, first in a broad review of the new vitality of art as a means of understanding, treating, and living with dementia. Next, I explore the way creativity’s unmarked positivity helps to structure personhood and its ties to representational culture. 1

In this essay, I use the term ‘Alzheimer’s’ to refer to Alzheimer’s disease and related dementias. I do so because of the way that Alzheimer’s has come to stand in for a range of symptoms and conditions in public and civic discourse. Its status as a given only underwrites the givenness of a possible solution.

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I then employ two case studies to demonstrate social attitudes toward creativity and artistic production. The first examines the case of William Utermohlen, a little-known artist who achieved public fame for the art he made living with Alzheimer’s. I demonstrate how art can communicate a pathological interiority based on a presumed connection between the material evidence of the artwork and personhood. Visuality is precisely what binds public and professional understanding of the creative act, and it sets the foundation for a historical argument about the way Utermohlen’s art fits into modern life course narratives and related concepts of individuality and viability. The second case study focuses on Willem de Kooning, perhaps the most well-known artist with Alzheimer’s, to demonstrate how museological tradition can also structure pathologized personhood despite best intentions to the contrary. In particular, I describe an encounter with a de Kooning career retrospective at the New York Museum of Modern Art, demonstrating how creativity enforces models of extraordinary modern selfhood, narratives of aesthetic progress, and forms of magical thinking. I finish the essay with some new ways to approach creativity and Alzheimer’s – in particular noting the need to celebrate the obvious value of art interventions while moving toward a more complex account of their place in representational culture.

P ROFESSIONAL AND PUBLIC INTEREST AND ALZHEIMER ’ S

IN ART

Professional and public interest in the relationship between art and Alzheimer’s is diverse, in part because there is significant debate about art’s status, social functions, and effects. In what follows, I outline some of the overlapping public and scientific investments in art as a way to treat, understand, or otherwise engage the disease, along with some preliminary introduction to art’s claims on personhood. One important research trend operates as a subgenre of the emergent field of neuroaesthetics, a field in part concerned with the neurological basis for the appreciation and production of art (Shimamura and Palmer 2012). Much of the related Alzheimer’s research focuses on the correlation between compromised brain function and creative practice. Cognitive tests that involve art, although not labeled as such (drawing clocks, for example), have long been a standard component of diagnostic practices. It is an easy leap to engage research with more complex forms of representation. People

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with dementia often experience changes in those artistic abilities linked to perception, cognition, and expressive inhibition. Because of this, looking at the relationship between dementia and art can serve as a way to understand the neurology of art more broadly (Miller and Hou 2004; Mendez 2004). Researchers have focused their inquiry on both professional artists and nonprofessionals with different kinds of dementia diagnoses in order to compare and map neurobiological artistic function (Rankin et al. 2007; Gretton and ffytche 2013). Art therapy has become an increasingly popular mode of treatment for people with Alzheimer’s.2 Art therapy can include a range of creative activities such as painting, collage, sculpture, music, drama, dance, poetry, and storytelling. While art therapy is used for both people with dementia and their caregivers, most research has focused directly on people diagnosed with dementia. For example, by investigating the relationship between neurological symptoms and the skills presumed to be useful in art practice, investigators have begun to learn how art therapy can respond to particular neurological dysfunction (Safar and Press 2011; Ehresman 2013). While conclusions are difficult to generalize, studies have shown that art therapy can impact participants in a range of different ways, including quality of life, mood, self-esteem, affect, alertness, and social and physical engagement; these interventions can directly target symptoms or provide meaningful social and/or expressive activity (Kahn-Denis 1997; Stewart 2004; Kinney and Rentz 2005; Rusted, Sheppard, and Waller 2006; Phillips, Reid-Arndt, and Pak 2010; Hattori et al. 2011; Beard 2011 provides a systematic review of that research). Despite the use of control groups in some of these studies, it is still difficult to discern how and even if the art practice itself is responsible for these impacts (as opposed to socialization, community, general validation, etc. that might accompany the creative act). Indeed, part of the problem with evaluating the success of these programs is in the lack of rigor or clarity in research design (Beard 2011: 638). However, in their broad review of the research on art therapy and Alzheimer’s and other dementias, Chancellor, Duncan, and Chatterjee cautiously conclude that artistic engagement may “improve behavioral symptoms and the quality of life in patients with dementia” (2014: 3). 2

Art therapy can also designate a model of psychotherapy or psychoanalysis, but I use the term here to refer to that professional standard of practice that locates therapeutic benefit or other positive outcomes in the creation of art.

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Art can also be helpful for a public audience as a means to recognize the sustained value of people with dementia. This is the perspective of the 2009 documentary film I Remember Better When I Paint, which, according to the film’s website, seeks to demonstrate to the public “the positive impact of art and other creative therapies on people with Alzheimer’s and how these approaches can change the way we look at the disease.” Presumably the ‘we’ in this statement embraces a collective, public audience to the creative acts. One of the more closely analyzed art therapy programs, the creative storytelling activity developed by Anne Basting called Time-Slips, was the focus of a study that looked at how art therapy can affect medical professionals. Researchers found that participation in TimeSlips helped medical students develop “positive attitudes” (George et al. 2011: 700) toward people with dementia. Another study showed that staff in a longterm care facility who participated in TimeSlips reported positive interactions and developed “positive views” (Fritsch et al. 2009: 124) of people with dementia. Studies like these illustrate how the visibility of creative therapies can combat the public stigma that often accompanies Alzheimer’s. Music is also strongly tethered to the fight against Alzheimer’s in popular imagination. For example, the 2014 documentary film Alive Inside, linked to the organization Music and Memory, revolves around the idea that music has the power to “tap into” buried memories and ergo buried identity. An early excerpt from the documentary went viral in 2012, garnering several million views on YouTube and extensive, celebratory media commentary. In the excerpt, a hunched, withdrawn man with dementia begins to listen to music from his youth through headphones, and he dramatically responds to the music. His eyes widen, he sits up, and displays animated, excited behavior, singing along. The key to the video’s popularity is perhaps the instantaneous and expressive transformation in the man’s demeanor. The music is understood to mysteriously recover lost selfhood. Oliver Sacks, interviewed in the documentary, echoes this thesis, arguing that when people with dementia are “out of it,” the music “will bring them back into it, into their own personhood, their own memories, their own autobiographies.” Indeed, one primary benefit of artistic engagement that is often accepted unequivocally by both practitioners and the public is the power of artistic practice to communicate, express, or affirm “inner” experience or a

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sense of self of the person with Alzheimer’s. In fact, art therapy is also known as “expressive therapy” (Abraham 2005: 90) precisely because of its ability to bypass verbal communication while still allowing for personal or social expression. This affirmation and expression is understood to be socially ameliorative, as Alzheimer’s is popularly imagined to threaten those elusive qualities that make a person who they are. In other words, because Alzheimer’s symptomatology is largely understood as originating and occurring inside the mind, and Western assumptions of personhood are irrevocably tied to that idea of interiority, a common stigma is that Alzheimer’s threatens a person’s ‘true self’; as a person loses their memories, relationships, and identity, presumably their very selfhood is lost. Art oriented interventions fit into a broader set of practices and research that challenge the priority, definition, or ideology of personhood through new approaches to care; indeed, there is now significant research that locates selfhood, identity, and memory more diversely in social practices, embodiment, or community (Kitwood 1997; Sabat 2001; Ballenger 2006: 152-187; Kontos 2006; Cohen 2006, Leibing 2006, 2008; Basting 2009; Fazio 2008; Katz 2012; for a contemporary review of how art fits into current approaches to self and person in dementia research, cf. Caddell and Clare 2011). Creative practice is thus understood to originate not merely in the brain or in cognitive function, but as an alternative model for affirming personhood more broadly. Whether charting neuroaesthetics, mapping therapeutic potential, or developing models of sociality and community, each of these encounters with art contributes to a broad trend in the public vitality of art and creativity. Art is increasingly integrated as a component of quotidian Alzheimer’s care. New groups such as the UK-based Baring Foundation or the US-based National Center for Creative Aging are coordinating and funding large scale efforts at supporting the role of creativity in healthy aging. The cottage industry of self-help media encouraging aging consumers to ‘use it or lose it’ increasingly integrates art into its activities. This is echoed by a news media anxious to provide some hope; US public television provider PBS, for example, produced a two part series called Art and the Mind that celebrates art’s positive power. From the small scale to the very large, we are collectively engaged in an exciting shift in social attitudes toward Alzheimer’s, and art is at the promising heart of this movement.

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R EPRESENTATION ,

CREATIVITY , AND PERSONHOOD Despite uncertainty about how art works for people with dementia, there is an insistent claim that it works; broader social investments in art maintain these interventions as universally positive. What is it about art that harnesses public hope and investment? Why does creative expression exist in dichotomous relationships with biomedical interventions? Does it have something to do with the social space of art as something mystical or mysterious, or as the pure expression of individuality? Is creativity’s purest ideological promise individual potency? While not antagonistic to the emergent social, cultural, and scientific relationships between dementia and art, I argue that we need to situate those relationships within the broader mediations of Alzheimer’s personhood. I propose that a core issue in the biopolitics of Alzheimer’s creativity is the problem of representation.3 Representation matters to people with Alzheimer’s, but I would argue that it matters more to those people who do not have the disease. For it is through systems of representation that we collectively make sense of its symptoms, and art is Western society’s most utopian mode of representation. As a disease most popularly understood to rob or steal one’s personal memories, Alzheimer’s might even be understood as a disease that threatens representation. Look, for example, how Alzheimer’s symptoms are commonly represented in popular culture. Forms of media such as family snapshots, post-it notes, or decaying celluloid document a missing past whose loss is echoed by the ephemeral nature of the media itself. Or consider scientific research: Over a century of neuroscientific representations have documented the pathology of the brain in microscopic detail, promising a kind of scientific truth of the disease by looking more closely and with increasingly sophisticated representational models. We maintain collective investments in these forms of representation as evidence of the disease and its threat, and consequently, personhood for people with Alzheimer’s is often accorded a representational presence. Creativity, then, might be understood as a kind of hopeful authorization of that representation, a marker of individuality or the potency of personhood. In a review of the research on art therapy and dementia, Crystal 3

For a more exhaustive genealogy of these representational issues, cf. Selberg (2013). For further review of the scientific representation of personhood, see, for example, Dumit (2004).

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Ehresmen focuses in part on the creative aspects of these practices. She accepts that ‘creativity’ is a difficult word to define, but “for simplicity” she refers to it as “the process that goes into creating any novel product or piece of visual artwork” (2013: 8). I agree that creativity is a difficult word to define, one certainly dependent on the context of its use. But given the ways it is ideologically potent, it is also a term that needs to be more carefully explored within the social orientation of the Alzheimer’s subject. That said, I am less concerned with what creativity is than with the ways in which it achieves institutional and formal logic. This includes both public perceptions of art and dementia and increasingly professionalized art interventions. Of course, creativity’s optimistic ambiguity is linked to the ambiguity of ‘art’ more broadly. Kate de Medeiros and Anne Basting argue that the difficulty in ascertaining art’s viability as an intervention can be linked in part to the lack of systematic descriptions of the art, who is affected by it, and the mode of delivery; cultural arts interventions are in fact distinguishable precisely by their imbrication in meaningful social contexts, and current research designs are unable to fully address that situation (2014: 351). Given the complexity of these contexts, Sheelagh Broderick (2011) urges practitioners to take seriously the different actors involved in the broad array of arts interventions, and their expectations and definitions of health outcomes. But the promise of creativity and personhood historically structures all art interventions, whether they are designed to treat symptoms, create value, or contribute to socialization or community. Indeed, while making art and appreciating or experiencing art are clearly different practices, they tend to fold together in the event of their social reception. And while art therapists will likely voice the objection that these practices are foremost dismissive of the tangible artifact that is produced – that it is the making that matters rather than the work of art itself – this is not always true. Art created by artists with dementia is often scrutinized by public and science alike. But beyond that, as a cultural practice, art making is unquestionably tied to narratives of art conservation, museology, and other forms of value ultimately antithetical to the proposed aims of a pure creative therapy, aims that are ostensibly dismissive of the final ‘product.’ Creativity’s claims to personhood are further evidenced by its ideological attachment to modern definitions of humanity and human agency. For

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example, opposing a “culture a standardization” in youth education, “creativity expert” Ken Robinson opined in a 2013 TED talk that creativity is “the common currency of being a human being.” The logic of Robinson’s truism echoes in the dementia intervention literature. For example, art therapist Cathy Malchiodi argues that “creativity has come to be defined as a human potential, a capacity we can develop in ourselves if we want to” (2007: 65). Here creativity is offered as both essentially human and agential. This is the perspective adopted by the United States based National Center for Creative Aging, an organization dedicated to the vital relationship between creative expression and healthy aging […] for older people of all cultures and ethnic backgrounds, regardless of economic status, age, or level of physical, emotional, or cognitive functioning. (2014)

The biopolitics of creativity for Alzheimer’s are thus fundamentally tethered to temporally oriented practices of self-making. It is a deeply human form of productivity. That creativity implies a movement forward in time not insistent on a comprised past is the root of its promise as a psychosocial intervention for people with dementia. But if creativity is a language of human progress and becoming, it is also enormously available to magical thinking and ideological slippage. It is with this in mind that we must think about the ways investments in art and personhood orient the subject of Alzheimer’s. Discussing the artist Willem de Kooning, who famously had Alzheimer’s, Peter Gibson argued in the British medical journal The Lancet that the act of painting may have had therapeutic value for him but no more so than basket making. The question of more general interest is whether a creative act, however overtly conscious, has any greater therapeutic value than basket making? (1996: 1838)

I appreciate the way in which Gibson has bracketed the intentional, creative act from therapeutic value. I would also add the supporting question: For whom does the creative act have value? Given the way in which representational culture dominates narratives of modern selfhood, it is entirely understandable that we might have a difficult time ascertaining social complicity in these values. What social investments do we maintain in creativity as a vehicle of self-expression, as an expression of personhood distinctly linked to modern representational ethics? And what are the effects of that investment on the cognitively disabled? How does the act of making or creation

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inaugurate a temporally-oriented ethics of selfhood? An ethics strongly complicated by the social orientation of Alzheimer’s as foremost a crisis of memory? We need to take seriously the biopolitics that accompany and help produce such creative practices, especially as they set up dichotomous relationships between personhood and representation, absence and presence, and healing and loss.

W ILLIAM U TERMOHLEN : S OCIAL ART AND ALZHEIMER ’ S

ATTITUDES TOWARD

William Utermohlen, an American artist who lived most of his life in London, was diagnosed with Alzheimer’s in 1995. After his diagnosis, he painted a series of self-portraits, much as he had done in earlier stages of his career. These new self-portraits were more abstract than many of his older ones. In fact, one could argue that they became progressively more abstract as he aged and the disease itself progressed. Not surprisingly, it was only after his diagnosis that his work developed a popular, international appeal, precisely because of the way his art appeared to reveal some essential truths about the subjective experience of the disease. For example, the popular reception of these self-portraits often focuses on how their aesthetics reflect an interiority or selfhood that fades away as the disease progresses. Comments on an online blog’s reproduction of Utermohlen’s late work centered on sadness and his evident loss of identity (Linderman 2006). A 2012 article in the Huffington Post garnered similar public response, but respondents commented most actively on the aesthetics of the paintings. One called them “cruelly representational,” while another said his work “takes us into the mind of an Alzheimer’s victim like no other written word has ever accomplished.” Commenters also oriented those aesthetics within a modern tradition, citing figurative resonance with the work of painters such as Van Gogh, Picasso, and Munch. Key to the reception of Utermohlen’s work is the way the successive orientation of paintings allows for a kind of time-lapse coherence to a narrative of mental decline. Not only can viewers compare Utermohlen’s healthy work with those paintings produced during his illness, but that creativity takes on a necessarily comparative stance. It is precisely through their juxtaposition that the paintings achieve both popular appeal and a narrative structure. This, in turn, tends to make the narrative of loss more dramatic. Frédéric Compain’s documentary Glassy-Eyed (2009) narrates

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Utermohlen’s perceived decline over a montage of the artist’s paintings set to music. This technique adds some narrative drama to the process, even as it authorizes the decline narrative of Alzheimer’s more broadly. Fig. 1. The organization of Utermohlen’s self-portraits in Glassy-Eyed (Courtesy of Icarus Films)

Importantly, in this discourse, it is the creative nature of the representation that allows for a kind of communicative tether between healthy and diseased people. This is purportedly something that only art can achieve. As commenters point out, the art does what words and science cannot. Journalists covered Utermohlen’s story rather extensively, and the thread that unites that discourse is this idea that the art is reflective of an internal pathology. In turn, most presume the art gives a viewer access to the normally hidden workings of the mind of the Alzheimer’s patient. For example, Andrew Purcell writes in New Scientist that “despite this suffering, Utermohlen’s dedication to his art provides viewers today with a unique glimpse into the effects of a declining brain” (2012). Denise Grady wrote in the New York Times “the paintings starkly reveal the artist’s descent into dementia, as his world began to tilt, perspectives flattened and details melted away” (2006). An Associated Press article offers even more dramatic language: The works shortly after his diagnosis convey terror and isolation. Those feelings later give way to defiance and anger. Then shame, confusion and anguish. Then, in the shadowy final pair of portraits, little more than afterimages of a creative and talented spirit whose identity appears to have vanished. (2006)

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Aside from the popular appeal, another reason for the dissemination of his late work is that Utermohlen wanted to put his art into dialogue with medical research.4 At least, he willingly engaged in research that examined the relationship between symptom and aesthetics. Crutch, Isaacs, and Rossor published a case study of Utermohlen in The Lancet in 2001, citing numerous sources in an analysis of the changes in his artistic style, including professional and familial interpretations of Utermohlen and his work, the artist’s own comments, and neuropsychological measures of his cognitive function. The researchers conclude in part that “the abstract style may provide an outlet for expression unhindered by the restrictions imposed by realism and the unattainable accurate replication of colours, forms, angles, proportion, and perspective” (2132). This analysis seems to orient agency more on the style rather than on artistic intent, but the symptoms still maintain distinctive relationships with aesthetics. In a later publication, two of the study’s original authors foreground the problem of artistic intention as a threatened component of the vocabulary of creativity (Crutch and Rossor 2006: 148). The researchers’ focus on intentionality is not surprising, given how public treatment of an artist’s legitimacy is largely predicated on that trait. Tobin Siebers, who writes about art and disability, points out that according to this kind of perspective, any loss of intention would denigrate the quality of the art in the public eye: Genius is really at a minimum only the name for an intelligence large enough to plan and execute works of art – an intelligence that usually goes by the name of “intention.” Defective or impaired intelligence cannot make art according to this rule. Mental disability represents an absolute rupture with the work of art. It marks the constitutive moment of abolition, according to Michel Foucault, that dissolves the essence of what art is. (2010: 15)

Siebers’ argument does not entirely apply to the public reception of artists with Alzheimer’s, as much of that reception is predicated on a temporal orientation of both healthy and pathological production. In other words, sometimes it is the original, embattled selfhood that is valorized for its productive capacity; it is no accident that one of the most common words public commenters use to describe Utermohlen’s late work is “heroic” 4

This is not just a strategy for popular reception. According to Margaret Lock (2013: 244), Myriad Genetics sponsored a 2008 exhibition of Utermohlen’s work in conjunction with an international Alzheimer’s conference held in Chicago that adopted a similar strategy of retrospective, before and after display.

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(“William Utermohlen’s Self-Portraits” 2012). Heroism is similar to genius in its reliance on intentionality, but it draws definition from the very disease it seeks to overturn or reveal. But for our purposes here, it is helpful to see how intentionality as a component of artistic creativity is precisely what is both valued and pathologized in social judgment of mental illness. Intentionality aside, it is interesting to note the assumptions that bind popular and scientific treatment of Alzheimer’s in relationship to visuality. While a neurological researcher might attribute changes in the formal properties of a painting done by a person with Alzheimer’s to changes in their visuoperceptual and visuospatial function, a non-specialist might interpret this as some evacuation of self or personhood. But both support the idea of creativity and the artistic individual as both resilient to and fundamentally affected by this disease. And they find that a source of hope or inspiration, despite its sadness. For example, referencing Utermohlen’s paintings, gerontologist Desmond O’Neill said that “even with the most feared illnesses of later life, art can afford insights into the preservation of our humanity and continuing need for self-expression” (2011: 1829). Here is the central paradox of the relationship between art, creativity, and Alzheimer’s: On the one hand, social attitudes toward the disease frame people with Alzheimer’s as disabled in a way that allows their minds to paint the world in special or unusual, albeit broken ways. On the other hand, the art also shows them as somehow reductively human; at core they are perversely more normal as they reveal something universal that unites all humans. This popular and scientific reception of Utermohlen’s work therefore circulates around three primary assumptions, all of them illustrative of deeply Western, modern paradigms. First is the presumed connection between an artist’s interior selfhood and the aesthetics of the art. As researchers Maurer and Prvulovic conclude in their study of a different artist with Alzheimer’s, “observing […] artistic changes with the progression of the disease may help to better comprehend the inner world of patients with Alzheimer’s disease” (2004: 244). Second is the assumption that Alzheimer’s attacks the substance of that interior self, evacuating or corrupting the personhood of the person with Alzheimer’s. This is a now standard perspective in public attitudes toward the disease, but what is novel in this instance is the assumption that personhood has a kind of representational presence, much like the pigment on a

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painting. And to erase that presence or to move toward abstract aesthetics in art is perhaps to reflect this new Alzheimer’s personhood. This is further evidenced by the fact that the artist with Alzheimer’s only has public value as an artist. Utermohlen died in 2007, but he stopped painting many years before then; public reception of his work orients the timeline of his personhood squarely with his creative productivity. The third modern assumption is that Alzheimer’s irrevocably alters our appropriate progression through life: It alters the movement forward, toward something better, more realized. Narratives of economic productivity, national progress, and technological transformation, for example, imply a cognitive demand perhaps counterintuitive to the compromised abilities of aging citizens.5 Alzheimer’s thus destabilizes the progression that informs Western narratives of both social modernity and cultural modernism. For example, Margaret Gullette (2004) argues that Americans often live out their lives through particular narrative structures, progress being one of the mostly deeply felt. Similar to narratives of technological progress so common in accounts of modernity, Americans often understand themselves through age-oriented notions of betterment, accumulation, fulfillment, and success. They often map the experience of a temporal self within a broader experience of national progress that implies both immanent possibility and a knowable history. Gullette argues that “progress is defined here as beginning in a personal relationship to time and aging, a willingness to get on the life course train, for a lifelong journey, and an anticipation of staying on the Patagonian Local because the future seems worth it” (ibid.: 16). She calls this the “American dream as a life-course narrative,” a “life-course imaginary” (ibid.: 143) of the way it should go, the way it has gone, internalized through recourse to narratives of progress and decline. Of course, we need not limit this account to one country, this is an orientation with capitalism more broadly. These are ideologically structured narratives that are often coded as natural or human. The myth of Alzheimer’s is that it disrupts the life-course narrative. It disrupts narrative itself, stripping the future and destabilizing individual and collective relationships with past and self. Athena McLean destabilizes this myth, asking whether it is all “narrative” that is threatened or a particular notion of narrative: “[P]ersons with dementia may employ creative strate5

Stephen Katz (2012) provides a helpful reading of dementia, progress, and memorial ethics through some different accounts of modernity.

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gies to adjust to their cognitive impairments and preserve their selves. Social identity can only be guaranteed when others acknowledge their stories” (2007: 54). So how does art fit into this kind of practice? Is creativity not a reassertion of the progress narrative as individual self-realization? I would argue that ‘preservation’ should not be a key objective for Alzheimer’s care, in that it overly values a personhood predicated on the past. The language of preservation, in other words, hinges on an ethic of selfhood based on memories or cognitive abilities ultimately threatened by dementia. However, McLean’s argument is useful because it offers a language and biopolitics of creativity that is not necessarily bound to aesthetic production. Opportunities for creative encounters with selfhood exist in countless social activities. Which begs the question: What is it about artmaking that is so appealing as a tool for dementia care? Is it the material evidence of that activity that demonstrates a kind of creative success? Or is it something perhaps more insidious, tapping into a longstanding social narrative that unites mental pathology and artistic ability? The next case study should help answer these questions.

E XHIBITING LOSS : T HE

DE K OONING - PROBLEM The artist Willem de Kooning famously had Alzheimer’s or some related form of dementia, although his exact diagnosis was controversial. Unlike Utermohlen, he never participated in any published research on the relationship between his symptoms and his art. Consequently, art historians, therapists, and neurologists alike debate how his later paintings reflect or were affected by that dementia (Storr 1995; Espinel 1996; Meulenberg 1996; Gibson 1996; Stewart 2002; Kontos 2003). The assumptions that undergird Utermohlen’s self-portraits also reverberate in the debates about de Kooning’s later work. Key are the notions of authenticity, intentionality, and value that link selfhood and artistic creativity. Is his later work the true act of creative genius, is it the result of latent or embodied memory, or something else? How did projection or repetition change the work? Was he helped by his studio assistants? I take the substance of these debates to be further evidence of the social investments collectively held on behalf of creativity and personhood. Not only does de Kooning serve as a touchstone in debates about Alzheimer’s and creativity, but he provides an opportunity to see how the institution of art demands a sort of accountability to authoritative, genius creativity: a

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social investment in a mediated personhood. It is on this institutional demand that I will focus my evaluation moving forward. Defending the relational aspects of selfhood, Kate McFadden and Anne Basting have argued that “although cultural stereotypes envision creative people working alone, creativity and the arts are fundamentally social, for the product of creative endeavor is nearly always shared with others” (2010: 153). But as the following evidence will show, this is not always the case – or it at least begs a more complex account – as institutions and epistemologies often cohere in the support of less harmonious forms of personhood. In late 2011, the New York Museum of Modern Art (MoMA) celebrated the life of de Kooning with a full career retrospective, a massive exhibit spanning a full floor of the museum. In addition to being the most famous artist with Alzheimer’s, de Kooning is arguably one of the most wellknown modern artists in general; the admirable size and scope of the show echoed that fact. The exhibit was designed with a trajectory that began with his earliest works and moved progressively through different hallmark periods of his career, concluding with his final decade. This retrospective format is perhaps a traditional way to think about a person’s life after they have died, and it is certainly indicative of the aforementioned life-course narrative so ingrained in Western notions of health and aging. But it also reinforces MoMA’s investment in both temporality and artistic labor as informed through progress narratives. Part of the broader MoMA Alzheimer’s Project, the art access program Meet Me at MoMA invites people with early to mid-stage Alzheimer’s and their caregivers to participate in small group visits to museum collections on days when the museum is closed. I observed such a group visit to the de Kooning show, and their visit bears heavily on this argument around creativity and Alzheimer’s.6 Meet Me sessions generally focus on just four or five works of art, and specially trained museum educators lead participants through discussions designed to lessen anxiety and respond to the art. Most sessions are oriented around a particular theme or occasionally a particular show, and the theme of that particular visit was the de Kooning show. Our group was composed of about 15 people. We looked at several artworks, slowly moving through his life and talking about the paintings. But the 6

From 2008-2012, I was engaged in ethnographic research at Meet Me at MoMA, and it was then that I had this experience. For a more comprehensive analysis of this program, see Selberg (in press).

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educator never talked about Alzheimer’s or the dementia de Kooning encountered at the end of his life. This was in line with the general practice of never mentioning Alzheimer’s during a Meet Me session, as the sessions were supposed to provide some escape from the disease. But beyond even that, the exhibit itself did not reference the disease or symptomatology in the final decade galleries either. MoMA seemed generally unwilling to foreground the subject of his illness, perhaps because the subject had received so much previous attention in the international art world. For example, in the 1995 San Francisco Museum of Modern Art show on de Kooning’s later work, Alzheimer’s was highlighted as a key aspect. Corresponding with that show, two physicians working on Alzheimer’s participated in a panel discussion with art historian T. J. Clark. Each addressed in turn possible correlations between de Kooning’s later work and his physical and mental condition, but they all urged care in making definitive connections between aesthetics, creative ability, and his symptoms. Still, the primary focus of that panel was Alzheimer’s and his later work (Clark, Tanner, and White 1995). In 1997, New York MoMA staged their own show of the late work of de Kooning, including forty paintings from 1981-1987. Acknowledging the popular reception of this work as perhaps pathologized, curator Robert Storr argued instead that this was a productive, creative, and inventive time period for de Kooning, the paintings a product of a “superior aesthetic intelligence exploring the furthest limits of consciousness itself” (1997). While Storr did not make definitive connections between Alzheimer’s and de Kooning’s aesthetic style in this commentary, he did use the language of mind to make his point. However, like the 2011 show, the 1997 show did not include any of de Kooning’s very last works – those painted after 1987, ostensibly when his Alzheimer’s too seriously affected his artistic abilities (Thomas 2011). MoMA’s chief curator emeritus of painting and sculpture, John Elderfield, said that this was a difficult curatorial decision. But it was one clearly based on aesthetic evidence; Elderfield said “the pictures after ’87 are a different species of painting. They are transitional to something else that never happened. I didn’t want to end on a lesser note” (qtd. ibid.). Elderfield’s comments demonstrate a broader commitment to the artist’s career trajectory so evident in the retrospective. These three de Kooning exhibitions reveal clear tensions about the relationship between Alzheimer’s and creativity. I will not argue that the 2011

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NY MoMA show covered up his dementia, but it certainly did not foreground it. His declining ‘abilities’ were mentioned, but the show refrained from citing this as Alzheimer’s or dementia. If symptomatology appeared at all, the exhibit installed those symptoms within the logic of the aesthetic production. Words used in the wall text in the final two rooms such as ‘diminish,’ ‘lessening,’ or ‘atrophy’ ostensibly described the aesthetics of de Kooning’s painting, not his abilities. Here, cognitive disability is translated into spatial or linear description in the paintings. What is fascinating is the manner in which MoMA incorporated the subjectivity of Alzheimer’s without even mentioning the disease. This became even more clear in my Meet Me tour. As we walked into the final room of later paintings, the educator asked us all just to look – no need to talk, no need to say anything – just look. We stood in the middle of the final gallery in the exhibit, surrounded by approximately ten to 15 of de Kooning’s paintings from the 1980s. The wall text (and audio tour, more extensively) described this as ‘reminiscent’ of work done in earlier periods. As an observer, I found the moment somewhat fraught because I anticipated some sort of declaration of solidarity or an identitarian recognition perhaps offered by the program. But my anticipation of some sort of frank conversation about dementia and art never manifested. Many of the participants enjoyed the work, just as they had enjoyed the earlier paintings. Perhaps the paintings of the final decade elicited a more effusive response. It is difficult to say. But murmurs of “oh I like these,” “these ones are good,” or “beautiful” made no necessary claims to psychological affinity, to pathologized affection. It was simply a room of paintings with unclear but certain appeal. People were tired after the hour and a half tour of the exhibit, and it was time to leave. But in an ironic moment, the large doors at the end of the exhibit were locked, and we could not exit. The educator leaned heavily on the doors, grimace on her face, to no avail. Instead, we had to retrace our steps all the way back through de Kooning’s life, revisiting the paintings we had seen along the way, shuffling along as a group, finishing the way we began. The museum made two primary comments on de Kooning through the structure of the exhibit which each react problematically with the subject of Alzheimer’s and creativity. First, they reinforce the idea of de Kooning as a master artist and an individual whose illness (however unmentionable) had a necessary relationship with his aesthetic output. Individuality is validated

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through recourse to extraordinary modern selfhood – a selfhood that waned or failed as did, eventually, his art. Second, the retrospective organization of the show asserts a life course narrative as one of progress and creative realization. Each of these strategies coincides with more traditional museological practice and investment. I should repeat that there is no necessary connection between those diagnosed with Alzheimer’s making art and those with Alzheimer’s looking at it. But I have tried to show how Meet Me in fact unites artist and participant in the developing social subject of Alzheimer’s as a function of creativity and aesthetics. Certain assumptions about the disease as a threat to individual interiority cohere in social investments in the historically situated category of art. But I would also argue that MoMA benefits from a much older tradition of associating modern art with mental illness. This is of course a pattern beyond the museum’s control, but it arguably feeds the publicity. According to this perspective, the unusual or creative aspects of the art originate in the unusual aspects of the mentally or socially ill mind. Be it Jackson Pollock’s excessive alcoholism or Vincent Van Gogh cutting off his own ear, popular histories of modern art frequently associate exceptional talent with apocryphal tales of ‘mad’ behavior. But this kind of discourse also illustrates an uneasy slippage between the reception of genius and the mentally ill as concerns creative labor. The art historian T. J. Clark commented on this problem in the aforementioned panel talk associated with SF MoMA’s 1995 de Kooning show: I should hate the painting of de Kooning’s last ten years to be canopied by the glamor of pathology. There is a danger of that happening, I think. Maybe many of us would like to be shown that modern art at key moments was (literally) pathological, because that would allow us to forget that for much of the time it was metaphorically, or deliberately, so. (1996: 3)

Clark clearly references a broader social investment in the myth of the artist as mentally ill or deranged. But he also shows that this social investment transfers madness from a socially dispersed, modern condition to an identifiable and individually held illness. This is a mode of control as much as it is a renunciation. Is it out of the question to wonder if the public fascination with Meet Me follows similar assumptions about mental illness and modern art? Not at all. Public responses to the Utermohlen work almost assure that it is so. Indeed, Alzheimer’s is so insecure as a social category that this kind of cultural connection almost makes sense.

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Alzheimer’s disease and art are each relatively overdetermined as social concepts that overwhelm the normalizing constraints of identity and value. It seems natural that social attitudes toward their relationship would maintain a certain vagueness. Speaking about Meet Me, aging and creativity pioneer Gene Cohen commented on the relationship thus: “the energy coming from the visual art itself engages in ways that are so unexpected, and actually they’re quite mystical, so I don’t think anyone knows why this happens” (qtd. in Rosenberg et al. 2009: 68). By this logic, it does not matter how but simply that people with Alzheimer’s can benefit from interactions with art; this perspective is not isolated. Creativity is a kind of magnet for magical thinking. As Frans Meulenberg claimed in The Lancet in the debate over de Kooning’s later work: “Does dementia undermine creativity or does it change its energy? It is impossible to give an answer” (1996: 1838).

C ONCLUSIONS : T HE

VALUES OF CREATIVITY As neurologists and gerontologists and therapists continue to research the potential benefits of art interventions of all kinds, it is critical to acknowledge the kinds of myth-making that accompany the social reception of these practices. Given the overwhelming interest and investment in neuroculture in all areas of the academy, this is a myth that we help condition “in the co-construction of the very neurocultural problems and prospects, hopes and fears, concerns and anxieties, we profess to study” (Williams, Higgs, and Katz 2012: 75). I offer the following suggestions that might help us collectively destabilize creativity and its attendant social investments in the current moment. First, without dismissing the significant progress in the fight against social stigmas of aging and cognitive disability, we ought to question the essential positivity of art: the social insistence on the value of positive outcomes in both their productive, creative sense and their frequent opposition to the negative aspects of Alzheimer’s. Next, we need to take seriously the way creativity’s positivity sets up dichotomous relationships with biomedical interventions that offer different forms of evidence. Clearly those dedicated to psychosocial interventions for Alzheimer’s are frustrated with the overwhelming dominance of biomedical treatments for the disease. Arts and psychosocial interventions are often framed as an alternative to biomedically oriented treatment; they promise a

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fresh perspective into a frustrating medical situation without known cause, cure, or satisfying treatment. As just such an intervention, art steps in as both hopeful and progressive, a perspective that harmonizes with the broader public investment in art’s value for people with dementia. Given that creativity is used as a way to define humanity itself, it is no surprise that it should be claimed by the arts (and humanities) in contradistinction to biomedicine. But dichotomizing biomedicine’s failures with art’s success does not allow for complex, sustainable models of personhood for people with Alzheimer’s. Perhaps one way forward is to diversify creativity’s logic, not simply by recognizing that biomedicine is itself consistently engaged in creativity, but also by radically reconfiguring what gets to ‘count’ as an artistic intervention. Here we might articulate a new ethics of creativity in dementia care that embraces all manner of embodied acts under the rubric of art therapy. Or look for ways art and biomedicine are – while distinct – also complementary, sharing in components conducive to desirable health or social outcomes. Despite the potential variability of these engagements, this should in fact harmonize with DeMedeiros and Basting’s call for a “stronger understanding of the mechanisms at work in cultural arts interventions” (2014: 351). This diversification implies a different kind of relationship with progress and the future that involves confronting both representational and institutional hierarchies as well as a radical openness to what creativity might be. Furthermore, this kind of practice will naturally help combat the ideology of human essentialisms or universalisms so prevalent in creativity discourse, and respect the differences that impact the lived experiences of everyday Alzheimer’s. Of course, art therapy is already good at diversifying creativity’s modes and value (from small c to capital C), but as I have argued in this essay, this perspective is often not reflected in its institutional and public reception. The two case studies on Utermohlen and de Kooning demonstrate the many ways dementia is useful for art when it is precisely the reverse ethic that frames the wellspring of the creative industry. More research is necessary to investigate the ideological slippage between art and Alzheimer’s, research that can map the way creativity has historically structured claims of personhood, interiority, authenticity, and value. That information should help not just in the arena of public health education, but in the delivery and exercise of art interventions themselves.

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Given the rise in public, philanthropic, and governmental interest in creative therapies, it would behoove those invested in art’s value as a psycho-social intervention to take seriously the representational ethics that provide its context. This involves understanding how art fits into a more diverse regime of mediated personhood rather than hailing it as special, magical, or unique. By honoring creativity as a banal process of the everyday rather than as heroic or genius, we might lessen the social insistence on creativity’s value while still allowing for and honoring minor, humble performances of self. This locates value not just in the response to pathological symptom, but still within – and not dismissive of – the ambiguity of loss. Perhaps here individuality will lose some of its social relevance, and creativity might be reborn as a mode of social collaboration and play.

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Linderman, Matt (2006): “William Utermohlen’s Self-Portraits” (http://37 signals.com/svn/posts/81-william-utermohlens-self-portraits). Lock, Margaret (2013): The Alzheimer Conundrum, Princeton: Princeton University Press. Malchiodi, Cathy (2007): The Art Therapy Sourcebook, New York: McGraw-Hill. Maurer, Konrad/Prvulovic, David (2004): “Paintings of an Artist with Alzheimer’s Disease: Visuoconstructural Deficits during Dementia.” In: Journal of Neural Transmission 111/3, pp. 235-245. McFadden, Susan/Basting, Anne (2010): “Healthy Aging Persons and Their Brains: Promoting Resilience through Creative Engagement.” In: Clinics in Geriatric Medicine 26/1, pp. 149-61. McLean, Athena (2007): The Person in Dementia: A Study in Nursing Home Care in the US, Peterborough: Broadview Press. Mendez, Mario (2004): “Dementia as a Window to the Neurology of Art.” In: Medical Hypotheses 63, pp. 1-7. Mental Health Foundation (2011): “An Evidence Review of the Impact of Participatory Arts on Older People” (www.baringfoundation.org.uk/Evi denceReview.pdf). Meulenberg, Frans (1996): “de Kooning’s Dementia.” In: Lancet 347/9018, p. 1838. Miller, Bruce/Hou, Craig (2004): “Portrait of Artists: Emergence of Visual Creativity in Dementia.” In: Archives of Neurology 61, pp. 842-844. Moisse, Katie (2012): “Alzheimer’s Disease: Music Brings Patients ‘Back to Life.’” In: Good Morning America April 12 (http://abcnews.go.com/ Health/AlzheimersCommunity/alzheimers-disease-music-brings-patient s-back-life/story?id=16117602). National Center for Creative Aging (2014): “Who We Are: Mission” (http:/ /www.creativeaging.org/who-we-are). O’Neill, Desmond (2011): “The Art of Medicine: The Art of the Demographic Dividend.” In: Lancet 377/9780, pp. 1828-1829. Percoskie, Suzanne (1997): “Art Therapy with the Alzheimer’s Client.” In: Humanistic Psychologist 25/2, pp. 208-211. Phillips, Lorraine/Reid-Arndt, Stephanie/Pak, Youngju (2010): “Effects of a Creative Expression Intervention on Emotions, Communication, and Quality of Life in Persons with Dementia.” In: Nursing Research 59, pp. 417-426.

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Purcell, Andrew (2012): “Self-Portraits of a Declining Brain.” In: New Scientist, January (http://www.newscientist.com/blogs/culturelab/2012/ 01/self-portraits-declining-brain.html). Rankin, Katherine P./Liu, Auli A./Howard, Sara/Slama, Hilary/Hou, Craig E./Shuster, Karen/Miller, Bruce L. (2007): “A Case-Controlled Study of Altered Visual Art Production in Alzheimer’s and FTLD.” In: Cognitive and Behavioral Neurology 20, pp. 48-61. Robinson, Ken (2013): “How to Escape Education’s Death Valley,” TED Talks Education (http://www.ted.com/talks/ken_robinson_how_to_esca pe_education_s_death_valley). Rosenberg, Francesca/Parsa, Amir/Humble, Laurel/McGee, Carrie (2009): Meet Me: Making Art Accessible to People with Dementia, New York: Museum of Modern Art. Rusted, Jennifer/Sheppard, Linda/Waller, Diane (2006): “A Multi-Centre Randomized Control Group Trial on the Use of Art Therapy for Older People with Dementia.” In: Group Analysis 39/4, pp. 517-536. Sabat, Steven (2001): The Experience of Alzheimer’s Disease: Life through a Tangled Veil, Oxford: Blackwell. Safar, Laura T./Press, Daniel Z. (2011): “Art and the Brain: Effects of Dementia on Art Production in Art Therapy.” In: Art Therapy: Journal of the American Art Therapy Association 28/3, pp. 96-103. Selberg, Scott (2013): Seeing the Person Within: Visual Culture of Alzheimer’s Disease, Dissertation, New York University, ProQuest/UMI. --- (in press, online February 2015): “Modern Art as Public Care: Alzheimer’s and the Aesthetics of Universal Personhood.” In: Medical Anthropology Quarterly. Shimamura, Arthur/Palmer, Stephen (2012): Aesthetic Science: Connecting Minds, Brains, and Experience, New York: Oxford University Press. Siebers, Tobin (2010): Disability Aesthetics, Ann Arbor: University of Michigan Press. Stewart, Ellen Greene (2002): “De Kooning’s Dementia.” In: American Journal of Alzheimer’s Disease and Other Dementias 17/5, pp. 313-317. --- (2004): “Art Therapy and Neuroscience Blend: Working with Patients Who Have Dementia.” In: Art Therapy: Journal of the American Art Therapy Association 21, pp. 148-155.

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Storr, Robert (1996): “At Last Light.” In: Janet Jenkins/Siri Engberg (eds.), Willem De Kooning: The Late Paintings, the 1980s, Rotterdam, Museum Boymans van Beuningen, pp. 39-80. --- (1997): “A Painter’s Testament: De Kooning in the Eighties.” Originally published in: MoMA Magazine, Winter/Spring, reprinted at: (www.mo ma.org/interactives/exhibitions/1997/dekooning/essay.html). Thomas, Kelly Devine (2011): “Shaping DeKooning’s Legacy.” In: Artnews, September 8 (http://artnews.com/2011/09/08/shaping-de-kooning s-legacy/). “William Utermohlen’s Self-Portraits of His Decline from Alzheimer’s Disease” (2012): In: Huffington Post, February 10 (http://www.huffing tonpost.com/2012/02/09/william-utermohlens-self-portraits_n_1265712 .html). Williams, Simon/Higgs, Paul/Katz, Stephen (2012): “Neuroculture, Active Ageing and the ‘Older Brain’: Problems, Promises and Prospects.” In: Sociology of Health & Illness 1, pp. 64-78. Zeisel, John (2009): I’m Still Here: A Breakthrough Approach to Understanding Someone Living with Alzheimer’s, New York: Avery.

Cultural projection of dementia in the Reminiscence Museum Dynamics of extrapolation E LENA B ENDIEN

F OUND IN THE B ERMUDA T RIANGLE During a spring afternoon, a group of clients from a Dutch nursing home came to visit the Reminiscence Museum in Rotterdam. The museum was founded on the premises of the Humanitas Foundation, a large residential care facility. The display of the museum reconstructs various scenes of domestic life from the last 150 years. All five visitors were using wheelchairs, but only two professionals were accompanying them. When I first saw the group, two of the visitors had been parked to the side. Apparently, one of the visiting women was interested in school accessories. Her wheelchair had been carefully pushed towards the school corner, where textbooks, pens, and other school items were displayed. It looked as if she was trying to reach for something, and I asked her whether I could help. She pointed to the atlas, and I put the old book in front of her. She was not very clear about what she was looking for and I registered automatically: dementia. The tangible presence of the atlas provided the woman with some reassurance. Carefully, she opened the atlas and started to turn the pages. For a while, she was totally absorbed in her activity. Provoked by my own curiosity, I was determined to help. So, I sat next to her on the school bench, with my eyes at the same level as hers and our heads turned towards the yellowed pages. For some time we turned the pages together. I repeated the question, and she said that she was looking for something but could not

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remember the name. This time she sounded very clear to me. I started to point at different places. Suddenly, the woman said: “Florida!” I quickly opened the right page. She looked at it and, without any difficulty in expressing herself, informed me that somewhere close to Florida there was a place where many ships had disappeared. I stared in disbelief and asked whether she meant the Bermuda Triangle. She nodded, radiating confidence and satisfaction. She told me that she had read a book about those mysterious events. I inquired when she had read it. She replied that it had been maybe 20 years ago. The details of her story and her almost mystical fear of the place were so engaging it was hard to believe that she could still become so excited about a 20-year-old piece of information. I reverted to my inner register: no dementia, just lonely and shy. The woman held my hand tightly and we spent the remainder of her visit together. She was showing me the place. It was she who decided on the topics of our conversation and who patiently explained all kinds of things that I had not been aware of. When her group was leaving, I accompanied her to the lift. She was genuinely surprised that I was not traveling with them. Curious about her opinion, I asked her what she thought about the museum. She looked at me brightly and asked: “What museum?”

T HE

MALFUNCTIONING REGISTER There is a growing awareness of dementia and its consequences in many countries where life expectancy is increasing (ZonMw-Memorabel 2013). While clinical research aims to find early diagnostic tools and treatment, lay knowledge has become a popular public domain for exchanges of personal experiences related to understanding dementia and to providing care for people who are affected by the disease. In the Netherlands, almost every adult either has a family member or an acquaintance who is suffering from a form of dementia or is involved in the care of a diagnosed person. Lay knowledge about dementia is almost never based on firsthand experience. Even the accounts of those who suffer from the early stages of dementia remain limited, in spite of the affective power that they convey (de Boer et al. 2007). This means that the publicly shared image of dementia is mostly based on observations that are subject to various influences. One source of biased opinions today is media coverage, which ensures continuous attention to the issues at hand, but also reinforces negative stereotypes of dementia (van Gorp and Vercruysse 2012: 1274-1275). Generalizations upon

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which the stereotypes are based are not harmless. To give an example, in the popular discourse, the terms ‘dementia’ and ‘Alzheimer’s disease (AD)’ are often used as synonyms. As a result, the entire diversity of dementia syndromes is frequently reduced to the problem of memory loss (Olde Rikkert et al. 2012). Another example of negative stereotyping concerns the expectation that a large part of the older generation will eventually suffer from a form of dementia. The opening example gives a good impression of how easily the clichés about older people are applied. The sight of a wheelchair and indistinct articulation of the visitor made me jump to conclusions that were hastily overruled a couple of minutes later, and which subsequently left me perplexed at the end of the visit. The reference register that I was using was not a personal invention. We all have unlimited access to an entire directory of commonplaces based on popular views of dementia. They conserve and maintain a fearsome image of aging in general and of dementia in particular. The awareness of dementia is necessary, but a balanced and differentiated coverage of the problem is even more important. Exaggerations create an atmosphere of uncertainty and fear, which can lead to anxieties that prevent people from seeking timely advice and support (Corner and Bond 2004: 152-153; Basting 2009: 4, 28). This chapter will demonstrate how clichés that link reminiscence in later life and dementia are created within the Dutch cultural context. My aim is to look critically at the uninformed extrapolation of ideas borrowed from good practices, like reminiscence therapy. By extrapolation, I understand the associative expansion of the images of dementia, which can have a negative effect on caregivers. The chapter’s objectives are to introduce the Dutch context of popular interpretations of dementia, to address the connection between the terms ‘reminiscence’ and ‘dementia,’ to illustrate how the popularization of reminiscence work influences its practical application, and to show how an innovative approach towards reminiscence work can mitigate the consequences of the widespread negative images of dementia. The chapter is informed by cultural studies of aging (e.g., Featherstone and Wernick 2005; Katz 2005) and socio-psychological approaches to reminiscence in later life (e.g., Middleton and Brown 2005; Middleton and Edwards 1990). I will proceed from a concise sketch of the representations of dementia in the Dutch context to a description of the dynamic link between dementia and reminiscence. Several well-intended but less effective applications of reminiscence work will be discussed. An innovative ap-

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proach towards reminiscence work will be analyzed, followed by conclusions about the diversity of ways in which images of dementia can be unfolded.

P OPULAR DISCOURSES D UTCH CONTEXT

OF DEMENTIA IN THE

According to Dutch public sources, the estimated number of persons that will be affected by dementia fluctuates between 320.000 and 426.000 for 2030 (data provided by the Dutch Bureau of Applied Social Gerontology and the Dutch Alzheimer Association respectively). Differences in the forecasts amount to over 30 percent (over 100.000 people) which implies that the estimations have been made on the basis of highly variable factors which are more suggestive than conclusive. While the projections vary considerably, including the possibility of a decrease in the total number of dementia patients, the public fear of the ‘upcoming disaster’ has been set in motion. One Dutch newspaper informs us thus: “Dementia is the new enemy of the people. In twenty years’ time half a million Dutch people will have dementia” (Luyendijk 2013). The article is meant to criticize feardriven exaggerations, but in the heat of the polemics another 75.000 people have been added to the earlier forecast. This figure may stay within the reader’s inner register as a point of reference because, as Basting notes, “popular culture belongs to the world of implicit memory” (2009: 25). Fortunately, this is not the only image of dementia that prevails in the Netherlands. The Dutch standards of medical care rank among the highest in the world, which induces the country to strive for a high number of older people who remain physically and mentally healthy. In addition, a large part of the population (3,5 million1) is involved in informal care, and their accounts provide a more varied and subtle image of dementia. Literature, cinematography, and television also influence the way in which the popular image of dementia is being shaped (for analysis of motion pictures cf. Gerritsen et al. 2014). Literary work in particular has become instrumental in steering the public debate about dementia in the Netherlands. Already in 1976, dementia became a central theme in a highly acclaimed Dutch novel Vroeger is dood (The past is dead) by the novelist Inez van Dullemen. The book gives a memorable account of her father’s 1

Official Dutch Government information dated 20/07/2013, see “Kamerbrief” (2013).

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mental decline and the fears of the nursing wards in the 1970s. In 1984, another Dutch author, J. Bernlef, wrote the novel Out of Mind (the original title is Hersenschimmen, i.e. brain-shadows), which introduces the reader to the world of a person who is suffering from dementia. This world is depicted as if experienced from inside the suffering protagonist himself, which strengthens the novel’s appeal. With time, more international literary work became available that was written from the perspective of both persons with dementia and caregivers (Bitenc 2012). The Dutch-Flemish literary tradition is now rich in (semi-)auto-ethnographic accounts of writers who use their own experiences as a basis for literary interpretation (Braam 2005; Offermans 2006; Mortier 2011). All this work has considerable affective power on readers, especially when it is saturated with tragic personal experiences. The underside of this power is the production of an image, based on pain and an acute feeling of loss, even in cases when the person affected by the disease is still alive (Swinnen 2013). The consequence of such narratives is often an extrapolation of this image to all dementias without distinguishing a unique individual behind the patient who becomes identified with the disease. These few examples hardly scratch the surface of the variety of sources upon which the popular image of dementia is fed. This image illustrates the formula ‘dying with dementia’ better than it supports the likelihood of ‘living with dementia.’ There is, however, a slight difference between the national and the local Dutch periodicals in their coverage of issues related to dementia. Due to the increasing interest in community-based care, the local Dutch press has recently paid regular attention to creative activities involving people with dementia and their carers. One of the recurring themes is reminiscence work. Popular local periodicals like De Oud Rotterdammer (The Old Rotterdammer) regularly feature reports about the pleasure of remembering. Some of the accounts describe specially created rooms containing some old paraphernalia that serve as a stimulus for recollection. Here is a typical example of how reminiscence work is described: The past becomes more important for those who grow very old. Older people have a natural need to talk about the past. But what if […] dementia strikes and your shortterm memory deteriorates? Reminiscence is a solution. […] For older people with dementia, reminiscence is the only way to preserve their identity and to present themselves. (Noordhollands Dagblad 2009)

Without going into detail about the theoretical validity of the statement, we can see that the link between dementia and reminiscence has been clearly

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established. Moreover, the popular discourse about reminiscence seems to generate a more positive account of dementia than the general discussion, which has not always been the case.

E NTRAPPED DEFINITIONS The notions of old age, dementia, and reminiscence are interlinked through a long history of human development. It will take a thorough interdisciplinary investigation of the history of philosophy and medicine to give a comprehensive answer to the question of why at the beginning of the 20 th century reminiscing2 in old age lingered either as an object of ridicule or as a symptom of mental degradation. I will use only a few examples to demonstrate the complex ways in which old age, dementia, and reminiscence were interconnected. The Greek statesman Solon (ca. 630-560 BC) pointed to the connection between dementia and old age when he wrote that judgment could be impaired by old age (Boller and Forbes 1998: 125). Aristotle (ca. 350 BC) considered reminiscing in later life to be a source for tedious garrulity, while Cicero, on the contrary, insisted that older people could use their memory for a productive and meaningful life (44 BC). Shakespeare emphasized the connection between aging and bad memory, describing old age as a “second childishness and mere oblivion” (cf. Thane 2005: 21, 24), and Jonathan Swift reported that the aged “have no remembrance of anything but what they learned […] in their youth […]” (ct. in Boller and Forbes 1998: 128). The propensity to connect old age with dementia, reminiscence, and impaired memory, then, has held sway for many centuries. In 1925, the French sociologist Maurice Halbwachs published a groundbreaking work on collective memory. His main idea was that recollection is possible only within a certain social framework, i.e., that we always reconstruct our experiences as a member of a social group, like a family member or a representative of an ethnic group. His innovative way of thinking defined the basis for the field of the social psychology of remembering. This is why it is especially provocative to read how he describes reminiscence among older people. Firstly, he makes a distinction between adults who are actively engaged in life and old people who “are tired of action” and “are in the most favorable position to evoke events of the past” (Halbwachs 1925: 47).

2

The terms ‘remembering’ and ‘reminiscing’ are used as synonyms here.

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Secondly, he tags the reminiscing of older people as “a true occupation” (ibid.: 48). Thirdly, he summarizes the social function of remembering among older people by comparing it with the social order within primitive tribes. He calls them “the guardians of traditions,” “the only ones to enjoy the necessary leisure to determine the details of these traditions in their exchanges with other old people” (ibid.). By providing a sociological grounding for reminiscence activity, Halbwachs seals the link between dwelling on the past and old age. He argues that society “gives old people the function of preserving the traces of its past” (ibid.). And “if one sometimes makes fun of those who take this role too seriously and abuse the right of the old to tell of their past, this is only because every social function tends to have a tendency to become exaggerated…” (ibid.). Halbwachs’s description of remembering at a later age is instructive because it shows how the tendency to reminisce is being used to marginalize older people as a socially passive group with a narrow societal function. Moreover, the inclination of older people to reminisce is taken for granted as a token of senility or as a medical condition without thorough investigation of its causes and benefits.

F ROM

A THERAPY AGAINST REMINISCING TO REMINISCENCE THERAPY With the publication of Butler’s seminal article (1963) about the importance of life review in old age, the connection between old age, reminiscence, and dementia was put into a new perspective. Butler’s article was based on an analysis of the functions of reminiscence freed from cultural and professional prejudice. He looked at the concept of reminiscence critically and made an effort to dissociate it from notions of compulsive dwelling on the past and “aimless wandering of the mind” (ibid.: 66). As a psychiatrist, Butler saw the positive influence of reminiscence, especially where unsolved conflicts or traumatic events were concerned. He suggested using reminiscence in therapeutic treatment. At the same time, he envisioned the practice of making a life review as “a naturally occurring, universal mental process characterized by the progressive return to consciousness of past experiences” (ibid.). Finally, after a long history of (mis)interpretations, reminiscence in old age lost the signposting function of dementia and ridicule. Instead it was assigned with positive effects that

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could be used against the same disorder for which it had been a symptom before (e.g., Bluck and Levine 1998). The most important change that Butler initiated was the positive approach to reminiscence. Dwelling on the past stopped being symptomatic in dementia diagnoses, but the connection between reminiscence and dementia was not eliminated. During the 50 years following Butler’s publication, reminiscence in old age has received a lot of attention within various academic domains. A new interdisciplinary field called Reminiscence Work has become a well-established mental health practice (e.g., Webster and Haight 2002; Gibson 2011). In contemporary academic and popular discourse, reminiscence has an array of definitions such as a social activity, an instrument of self-narration, or a therapy for people with psychiatric or memory problems (Bornat 2002). Webster and his colleagues (2010) made a significant effort to map the heterogeneous field of reminiscence in order to differentiate between various theoretical approaches and interventions. The authors limited their focus to the structured forms of reminiscing and their therapeutic value for mental health (ibid.: 531, 550-551). Westerhof and colleagues (2010) presented a constructive analysis of definitions and applications of reminiscence work in mental illness practices. They distinguished among and substantiated three general types of reminiscence: positive, dysfunctional, and social. They also looked at the practical implications of these types and came up with three types of reminiscence interventions, namely simple reminiscence, life review, and life-review therapy (ibid.: 712-713). One of their important conclusions is that the effects of interventions are heterogeneous and that “the evidence base for the effects of simple reminiscence is the thinnest” (ibid.: 714). In the last sections of this chapter, I will examine in more detail the notion of simple reminiscence. Now, I will address several issues that connect reminiscence work with popular images of dementia and aging. The broad application of reminiscence interventions has intended and unintended consequences. The spreading of reminiscence work as an acknowledged type of social and therapeutic intervention secures the continuity of the public, professional, and political attention towards the issues of healthy aging. At the same time, the accessibility and promotion of reminiscence work causes some loose interpretations that can give rise to simplified notions of reminiscence and even ineffective applications. For example, reminiscence work is still often seen as “limited to older people and

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those who have dementia,” which according to Gibson (2011: 30) are common misperceptions. These misperceptions are partly the consequence of “the popularity and burgeoning growth of reminiscence work that some have characterized […] as a ‘social movement’” (Middleton and Buchannan 1993: 322). Several issues arise from the popularization of reminiscence work. Firstly, popular interpretations can reinforce the connection between reminiscence and mental illness and ignore the importance of reminiscing among healthy older adults. A large amount of academic and specialist literature about reminiscence today addresses the medical problems of older adults, such as depression, dementia, cognitive impairment, etc. (cf. Woods et al. 2005; Pinquart and Forstmeier 2012). Therefore, the connection between reminiscence and disease is reinforced, which makes people wonder whether reminiscence is a suitable activity for a healthy adult.3 Another issue is the professional knowledge of the people who engage in reminiscence work. Gibson rightly points out that reminiscence cannot be monopolized by one profession, because people with different backgrounds and working in a variety of organizations do this work, including volunteers and people “with few recognized qualifications” (2011: 34). The question will be whether popular knowledge about reminiscence can be sufficient for an effective intervention, especially within the settings where vulnerable older adults dwell.

M ISPLACED

APPLICATIONS Woods et al. (2005: 8-9) demonstrate how applications of reminiscence work can improve the knowledge of staff about their clients’ backgrounds and, consequently, increase the popularity of such interventions among professional and informal caregivers. At the same time, one has to be careful not to oversimplify reminiscence in later life by turning it into a fashionable trend lacking proper reflection and criticism. Puentes is right to point out that “despite the intuitively appealing nature of reminiscence, health care providers should approach the use of reminiscence modalities with caution, considering both their own skill level as well as the goal of the reminiscence modality intervention” (2002: 509). In the Netherlands, reminiscence work is often conducted in nursing and residential homes for older people, which is probably why these organ3

This assertion is based on the author’s four-year experience of lecturing within the Dutch Higher educational program for older adults (HOVO).

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izations have started placing old-fashioned artefacts on display as a part of their interior decoration. The following two examples come from an ongoing ethnographic research project about the meaning of home for people with dementia. My friend was diagnosed with AD when she was 86. After a year and a half of intensive care at home, she had to move to a care facility. Leaving her apartment was already difficult, but moving three times within six months before the right place was found took an additional toll on her fragile mental health. I visited her in three different care facilities. In two of them, I was surprised by the way in which the popular idea of reminiscence had been adopted. One of the facilities had a long corridor along which the rooms of the clients were situated. The walls were painted in a hideous yellow, which led many visitors to wonder about the color choice. An oldfashioned chest of drawers had been placed at the end of the corridor, which was topped with an old Singer sewing machine. In addition, the end of the corridor had no light, so that most of the time the furniture was hidden in the shade, reminding me rather uncomfortably of a tomb. My friend had never noticed the chest of drawers, and I could not think of a reason why she should have. It was a stranger in an already strange environment, put there simply because it was old and, therefore, according to someone’s logic, right for an old people’s home. This example demonstrates one of the frequent misinterpretations of reminiscence that is based on the generalization that old-fashioned artifacts are good companions for older people. My friend, for example, always appreciated the style of the 1960s, so, even if she had noticed the piece, it probably would have left her indifferent. As we shall see, it takes much more than just an old artifact for an environment to appeal to the memory of a fragile older person. A couple of months later, my friend moved to a care facility based on an anthroposophical approach, which suited her life style better. It was a closed ward for people in the more advanced stages of dementia. During one of my visits, I saw another client who was wandering around with a very old and fragile doll in her hands. The sight was baffling, but before I could come up with an explanation, one of the nurses saw it as well. She rushed over to the woman, speaking quickly in a low but alarmed voice, telling her that she should not have taken the doll because it was not meant to be played with, but was there just to look at. When the commotion was

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over, the nurse showed me the corner in the sitting room where the oldfashioned toys were on display. They were all small and fragile, obviously not suitable for being touched or played with. The nurse explained to me that the intention of the display was to entertain the clients and to stimulate their reminiscences. But the execution of the idea proved to be questionable. The clients often destroyed the display by grabbing the things exhibited there. Eventually the toys were put behind glass for safety reasons and the clients lost all interest in them. This is another example of the well-meaning appropriation of reminiscence work without thorough consideration of its benefits or potential hazards. Reminiscing can have a positive outcome, even in cases with severe dementia, where artifacts, drama performance, and music have proved to be helpful in stimulating the remembering process or the feeling of wellbeing (e.g. Basting 2001; Vink el al. 2003). At the same time, an enthusiastic response to the stimuli among the clients with dementia should not be left unguarded. This example illustrates well the point made by Coleman about “an uncritical enthusiasm for stimulating reminiscence” (2005: 291), which is often seen as too simple an option for engaging older people. Additionally, the revived memories could be troublesome, which is a good enough reason to be more careful about unwarranted applications of reminiscence work, especially when fragile older people are concerned. To summarize, the accessibility of reminiscence work has allowed for its popularity and quick dissemination. The boundaries between persons with sufficient knowledge of reminiscence in later life and those who intuitively apply reminiscence interventions are blurred. Numerous interpretations of reminiscence activities for dementia patients have been tried out in practice, some of them without proper design or evaluation.

R EMINISCENCE

IN THE H UMANITAS WAY In 2005, the director of the Humanitas Foundation, a large residential care facility in Rotterdam, heard about reminiscence therapy for the first time. As someone who had removed all the white medical gowns and who had proclaimed that the goal of his organization was the happiness of the clients and not a medical cure (Becker 2003), he was not impressed by the report. But, as a good entrepreneur, he did not want to lag behind in a trendy de4

4

The idea to found the Museum as well as the vision behind it belongs to the former director of the Humanitas Foundation, professor emeritus Hans M. Becker.

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velopment. The decision was made to found a Reminiscence Museum, a place where old-fashioned artifacts would be used to recreate a domestic atmosphere from various periods in the 20th century. The following account of the Reminiscence Museum is based on the results of a research project conducted over a period of four years. It was a transdisciplinary qualitative ethnographic study about the meaning of remembering in later life. A major part of the data consists of transcriptions and field notes of the museum visitors’ spontaneous reminiscences that were recorded with their permission. The majority of the visitors were 60 years or older. Approximately 30 percent were healthy older people who lived independently. Another 30 percent were inhabitants of Humanitas who did not suffer from any cognitive disability. The final 40 percent were clients of Humanitas or other Dutch nursing homes suffering from a dementia. The Reminiscence Museum is an informative example of an innovative approach towards reminiscence work. In the following account, I will concentrate on the features of the museum that are relevant to this chapter (for a full account cf. Bendien 2010). Firstly, the museum was created as a nontherapeutic space, free of charge and open to the public at large. Its aim is to promote wellbeing and to improve the visitors’ quality of life. The museum is arranged as a large space (14 rooms) that reconstructs various sights of Dutch domestic life. This arrangement offers a variety of cognitive stimuli, including the possibility to taste old-fashioned sweets, to smell washing soap as it used to smell 40 years ago, and to listen to extracts from old radio programs. One of the goals of the museum is ‘to appropriate’ visitors, i.e., to make them actively use the environment, which can be compared to the experience of diving into this space. In this sense, the museum differs considerably from settings elsewhere where several artifacts or even an entire room is arranged for reminiscence work. Secondly, the museum is meant to be a meeting place for people regardless of their physical or mental state. By introducing this rule, Humanitas achieved at least two goals: It emphasized the importance of reminiscence for healthy older adults and it created an interactive space where people with different needs could meet, develop new social contacts, and participate in meaningful activities, like becoming a volunteer in the museum. In doing so, Humanitas has deconstructed two persistent clichés in regard to

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reminiscence, namely its connection with dementia and its association with presumed escapism in old age. Thirdly, the reminiscing in the museum is meant to be spontaneous. The museum displays do not contain any explanatory notes. They provide all kinds of topics the visitors can dwell on, but these are suggestions rather than directions for the remembering process. As a result, each visit is unpredictable and the story that is told is always unique. This feature of the museum allows for the collection of data that is usually inaccessible to researchers. Spontaneous or simple reminiscing remains an understudied area within reminiscence work, partly because the researcher is not present at the moment the reminiscing takes place and has to rely on the respondents’ reconstruction of what occurred afterwards (Cappeliez and Webster 2011). In the museum, we could come close to the moment of spontaneous recollection without interfering with the process of reminiscing. The spontaneous reminiscences that have been collected during the research project were provided both by healthy older adults and by people with dementia. In the following account, I will concentrate on two types of museum visits that demonstrate different forms of extrapolation in which the images of dementia are involved: visits of older people with dementia where the disease is still in an early stage and family visits with a person who suffers from a form of dementia. A person as a bricolage Interaction at the museum takes place at different levels. The visitors interact with each other, with the museum volunteers, and also with the artifacts displayed there. The display is equally accessible to all visitors. One can touch and play with each artifact that is not protected by a showcase, and there is always a volunteer present who will listen to their story. Older people who suffer from dementia are frequent guests at the museum. Some guests who are in an early stage of the disease come for a tour on their own. The reasons for their recurrent visits could be instructive for the ways we extrapolate the image of dementia. Firstly, they usually are not looking for the opportunity to dwell on the past. Instead, they are eager to talk about their recent experiences because their present life upsets or even frightens them. Their thoughts fluctuate between being sharp and logical at one moment and blurred and hazy at the next. The need to make some sense of what is happening to them urges people with dementia to look for

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somebody who will listen to them. And there is always somebody in the museum. A second reason for their frequent visits is the material environment of the museum, which reflects reliable experiences of the past, even when that person does not explicitly dwell on the past. It would seem that these visitors recognize the museum intuitively as a place they can trust, which is one of the purposes of its emphatic design (Bendien 2010: 296). It was in early 2007 when one of the frequent museum visitors also became my friend. Rebecca had Parkinson’s disease. One of my first images of her was when she took a big porcelain vase in her unsteady hands and I thought that she was going to drop it. She did not. We started talking, and after a while our conversations became a weekly ritual. Rebecca was usually the one who chose the topic. She talked about her past during our first meeting, but most of the time she told me about her everyday experiences. She shared her disappointments because of her failing health and told me anecdotes about her life in the nursing home. It was a fascinating mosaic of the crumbled but distinctive pieces of her experience, from which she tried to make sense by relaying them to me with touching trust. For example, the story about her pajamas that disappeared after they had been sent to the laundry made her angry and upset, but her joyful preparations for Easter compensated for her disappointment. There was not much logic in the way she jumped from one subject to another, but eventually she regained a feeling of self-assurance and was not ashamed or unsettled by the moments when her physical or cognitive capacities failed her. Not only were her stories, but she herself was a complex bricolage of her past and current experiences. Knowing her made it impossible for me to project the generalized image of dementia onto her because there was nothing general about her particular way of talking, feeling pain, or sharing her amusement with me. At the same time, our conversations had an important projection on the people who worked in the museum. The volunteers help the visitors around, but they rarely build relationships that go beyond their work. Also, when people with dementia visit the museum, they are often accompanied by care professionals. My colleagues noticed my meetings with Rebecca, but they always remained at a friendly distance. Nobody asked me about her or said anything until the day I was late for our meeting. When I came in, Rebecca was already in the museum, talking to one of the volunteers in her usual animated way. When he noticed me, he smiled, excused himself, and approached me saying: “You were not here when your friend came, so I

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talked to her a bit. She is a very nice woman.” I was touched to be called Rebecca’s friend, but even more so because my colleague liked her and called her a nice woman instead of a patient. That conversation made me realize that another kind of extrapolation is possible, namely the extension of the idea that each person with dementia is unique. Regular interaction with Rebecca proved to be a good way to ease the tension around the frightening notion of dementia, which can tear each of us down. A person and a creature The extrapolation of the frightening image of dementia to one’s own future is an important topic that still requires thorough investigation. During the research project, there were several occasions when professionals as well as visitors spontaneously expressed anxiety about their own future should they be diagnosed with the disease themselves. One of the nurses stated resolutely that she would prefer death to the slow degradation caused by dementia and that she had already taken legal steps to ensure this, meaning having signed a euthanasia statement in order to secure her wish. This example seems to be extreme, but those who are closely involved with care for people with dementia often have to face a mixture of personal experiences and common cultural projections. Gibson warns that professional and informal caregivers who are regularly confronted with mental deterioration as a result of dementia need to be prepared to deal with the question “Will I go the same way?” (2011: 191). Basting appealingly describes the fears that haunt people about dementia, for example the fear of being a burden, of being out of control, or of living a meaningless existence. But she is convinced that a change in attitudes in care practices and policies is a constructive way to address these fears (2009: 11). The Reminiscence Museum can be seen as an example of such a change. The clients and their caregivers experience the lively, spontaneous interactions that take place there as a relief. The museum corrects the one-sided image of a person with dementia who is supposedly only capable of receiving care without being able to give back anything at all. The visitors become emotional sometimes, but usually one can hear laughter there, which regularly comes as a surprise to the family members of persons with dementia. One afternoon, a family came to visit the museum. It was not cold but the older, fragile woman in the wheelchair wore a fur coat. She was a client from the nursing home who had been diagnosed with dementia. Her daugh-

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ter and son-in-law had told her in advance that they were going to visit the Reminiscence Museum, but when she looked around she instantly decided that she was vising her children’s home. She named dozens of objects. She knew exactly what they were for and what they were called. Her daughter looked surprised and puzzled at the same time. Was it right to keep her mother in the dark about their whereabouts? “In an hour she would not remember it anyway.” In the meantime, the older woman became excited. She raised her voice and felt warm. Her daughter and son-in-law smiled back but did not correct her. At first, they said nothing at all. But later on, they actively confirmed her illusion. At the end of the visit, the daughter asked whether her mother had liked it. The older woman did not hear the question but somehow intuitively understood that she would be leaving soon. She looked disappointed. Her voice lowered and without realizing that she was answering, she said “I found it wonderful. I found it wonderful, you know.” This example is illustrative of the multiple levels at which personal and cultural projections of dementia are juxtaposed in the museum. The nontherapeutic and house-like environment of the place had a positive effect on the wellbeing of the older woman and her interaction with her family. But the effect is temporary and can lead to the question of whether this kind of intervention is worth the effort at all. Another projection concerns the feelings and actions of the daughter and her husband who were forced to make a choice between being honest with the woman and playing along. The choice is not simple. The popular view of dementia gives way to this kind of evasiveness, but when a person projects the same situation to herself, the answer is not as straightforward. The daughter projected the setting onto her own mental state and felt acutely that she would not have liked to be patronized in the way she had patronized her mother. The tension between what is right and what is good is obvious here, but this tension is what the popular image of dementia usually does not address. Besides the ethical issue, there is also the issue of sufficient knowledge and proper understanding among family caregivers and even professional staff of what reminiscence work involves and how it can improve the wellbeing of the client and lessen the anxieties of the carers (Harmer and Orrell 2008: 551, 554). The popularization of dementia results in the creation of two kinds of persons, a healthy person and a creature that used to be a person, whereas in real life, we are dealing with (suffering) people to the very end of their

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lives. The museum has the power to penetrate into the person by awakening personal interest and highlighting her or his unique character. The woman in the last example said things about her life that her children had never heard before. In the museum, each person, even those with more advanced dementia, get the chance to have their voice heard, even when it is only for a brief moment. And although this clear frame of mind is just a temporary phenomenon, it gives an uncompromising answer to the question that the majority of the relatives and informal caregivers are confronted with sooner or later: Is the person that I used to know and to love still somewhere inside?

C ONCLUSIONS : T HE

PERSON , TO THE VERY END The popular image of dementia associated with memory decline is a result of rough extrapolation in which a person with severe dementia is usually used as a source image. But in fact, dementia is not one notion but many. And, if we try to avoid extrapolation, then we can see that what we are dealing with is not just a frightening image of a cruel disease, but mainly people who are frightened out of their wits about their own condition. In order to see, to hear, and to comfort these people, we can use reminiscing, dancing, painting, or any other creative technique that suits the purpose, as long as we evaluate those techniques critically. A proper evaluation remains challenging because first-person accounts of the disease are either fragmented or not accessible at all. People in the more advanced stages of dementia are less eloquent, if at all, about what they are experiencing. They are not easily awakened to the remembering process with the help of traditional reminiscence therapy techniques. But as the observations made at the Reminiscence Museum indicate, these people are still sensitive to the spatial environment they find themselves in. It was the space of the museum onto which the cultural past of the Netherlands is projected that has allowed many clients to become a person again. One of the important conclusions regarding the role of reminiscence in our understanding of dementia is that older people with dementia do not necessarily need to reminisce on their own to feel better. They can benefit from the feeling of belonging and the sometimes unspoken but well-sensed recognition of a cherished object, a familiar face or a story that is remembered and exchanged with somebody else who happens to be present. Seeing and understanding dementia through this kind of reminis-

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cence work can ease the apocalyptic tone that accompanies representations of dementia. And it may reverse the negative extrapolations of dementia images as well.

R EFERENCES “Alzheimer Nederland: Cijfers en feiten over dementie,” March 27, 2014 (http://www.alzheimer-nederland.nl/media/20217/Factsheet%20dement ie%20algemeen%20-%20publieksversie%2003-12-2013.pdf). Aristotle (2010): Rhetoric. Trans. by W. Rhys Roberts and edited by W.D. Ross, New York: Cosimo. Basting, Anne Davis (2001): “God Is a Talking Horse”: Dementia and the Performance of Self.” In: Drama Review 45/3, pp. 78-94. --- (2009): Forget Memory: Creating Better Lives for People with Dementia, Baltimore: Johns Hopkins University Press. Becker, Hans Marcel (2003): Levenskunst op leeftijd: Geluk bevorderende zorg in een vergrijzende wereld, Delft: Eburon. Bendien, Elena (2010): From the Art of Remembering to the Craft of Ageing: A Study of the Reminiscence Museum at Humanitas, Rotterdam, Rotterdam: Stichting Humanitas Huisdrukkerij. --- /Brown, Steven D./Reavey, Paula (2010): “Social Remembering as an Art of Living: Analysis of a ‘Reminiscence Museum’.” In: Michael Schillmeier/Miquel Domènech (eds.), New Technologies and Emerging Spaces of Care, Hants: Ashgate, pp. 149-167. Bernlef, J. (1984): Hersenschimmen, Amsterdam: Querido. Bitenc, Rebecca Anna (2012): “Representation of Dementia in Narrative Fiction.” In: Esther Cohen/Leona Toker/ Manuela Canssonni/Otniel E. Dror (eds.), Knowledge and Pain, Amsterdam and New York: Rodopi, pp. 305-329. Bluck, Susan/Levine, Linda J. (1998): “Reminiscence as Autobiographical Memory: A Catalyst for Reminiscence Theory Development.” In: Ageing & Society 18/2, pp.185-208. Boller, François/Forbes, Margaret M. (1998): “History of Dementia and Dementia in History: An Overview.” In: Journal of the Neurological Sciences 158/2, pp.125-133. Bornat, Joanna (2002): “Reminiscence and Oral History: Comparisons Across Parallel Universes.” In: Jeffrey Dean Webster/Barbara K.

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Haight (eds.), Critical Advances in Reminiscence Work: From Theory to Application, New York: Springer, pp. 33-43. Boer, Marike de/Hertogh, Cees M.P.M./Dröes, Rose-Marie/Riphagen, Ingrid I./Jonker, Cees/Eefsting, Jan A. (2007): “Suffering from Dementia – The Patient’s Perspective: A Review of the Literature.” In: International Psychogeriatrics 19/6, pp. 1021-1039. Braam, Stella (2005): Ik heb Alzheimer, Amsterdam: Nijgh & Van Ditmar. Butler, Robert N. (1963): “The Life Review: An Interpretation of Reminiscence in the Aged.” In: Psychiatry 26/1, pp. 65-76. Cappeliez, Philippe/Webster, Jeffry D. (2011): “Mnëmë and Anamnësis: The Contribution of Involuntary Reminiscences to the Construction of a Narrative Self in Older Age.” In: Gary Kenyon/Ernst Bohlmeijer /William L. Randall (eds.), Storying Later Life: Issues, Investigations, and Interventions in Narrative Gerontology, Oxford: Oxford University Press, pp.177-194. Cicero (1923): Cato Maior De Senectute (https://www.loebclassics.com/vie w/marcus_tullius_cicero-de_senectute/1923/pb_LCL154.9.xml?rskey= dYf7lT&result=19). Coleman, Peter G. (2005): “Reminiscence: Developmental, Social and Clinical Perspectives.” In: Malcolm L. Johnson/Vern L. Bengtson/Peter G. Coleman/Thomas B.L. Kirkwood (eds.), The Cambridge Handbook of Age and Ageing, Cambridge: Cambridge University Press, pp. 301309. Corner, Lynne/Bond, John (2004): “Being at Risk of Dementia: Fears and Anxieties of Older Adults.” In: Journal of Aging Studies 18/2, pp.143155. Dullemen, Inez van (1976): Vroeger is dood, Amsterdam: Em. Querido’s Uitgeverij B.V. Featherstone, Mike/Wernick, Andrew (2005 [1995]): Images of Aging: Cultural Representations of Later Life, New York: Routledge. Gerritsen, Debby L./Kuin, Yolande/Nijboer, Jessika (2014): “Dementia in the Movies: The Clinical Picture.” In: Aging & Mental Health 18/3, pp. 276-280. Gibson, Faith (2011): Reminiscence and Life Story Work: A Practice Guide, London: Jessica Kingsley Publishers. Halbwachs, Maurice (1992 [1925]): On Collective Memory, Chicago: University of Chicago Press.

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Harmer, Barbara J./Orrell, Martin (2008): “What is meaningful activity for people with dementia living in care homes? A comparison of the views of older people with dementia, staff and family carers.” In: Aging & Mental Health, 12/5, pp. 548-558. “Huiskamer vol houvast en herinneringen” (2009), In: Noordhollands Dagblad, February 7. “Kamerbrief over mantelzorg en langdurige zorg,” July 20, 2013 (http:// www.rijksoverheid.nl/documenten-en-publicaties/kamerstukken/2013/ 07/20/kamerbrief-over-mantelzorg-en-langdurige-zorg.html). Katz, Stephen (2005): Cultural Aging: Life Course, Lifestyle, and Senior Worlds, Peterborough: Broadview Press. Luyendijk, Wubby (2013): “Dementia Village.” In: NRC, July 16, p. 33. Memorabel: Programmatekst Onderzoeks- en Innovatieprogramma Dementie (2013), Den Haag: ZonMw. Middleton, David/Buchanan, Kevin (1993): “Is Reminiscence working? Accounting for the Therapeutic Benefits of Reminiscence Work with Older People.” In: Journal of Aging Studies 7/3, pp. 321-333. Middleton, David/Brown, Steven D. (2005): The Social Psychology of Experience: Studies in Remembering and Forgetting, London: Sage. --- /Edwards, Derek (1990): Collective Remembering, London: Sage. Mortier, Erwin (2011): Gestameld liedboek: Moedergetijden, Amsterdam: De Bezige Bij. Offermans, Cyrille (2006): Waarom ik moet liegen tegen mijn demente moeder, Amsterdam: Cossee. Olde Rikkert, Marcel/Verbeek, Marcel/Verhey, Frans/de Vugt, Marjolein (2012): “De ziekte van Alzheimer bestaat niet.” In: NRC, April 11, p. 15. Pinquart, Martin/Forsmeier, Simon (2012): “Effects of Reminiscence Interventions on Psychosocial Outcomes: A Meta-Analysis.” In: Aging & Mental Health 16/5, pp. 541-558. “Prognoses omvang dementia 2005-2030,” March 27, 2014 (http://www. btsg.nl/infobulletin/dementie/prognose%20dementie.html). Puentes, William, J. (2002): “Simple Reminiscence: A Stress-Adaptation Model of the Phenomenon.” In: Issues in Mental Health Nursing 23/5, pp. 497-511. Swinnen, Aagje (2013): “Van Stereotiepe beeldvorming naar dementievriendelijk samenleven.” In: Ruud Hendriks/Annette Hendrikx/Ike

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Kamphof/Aagje Swinnen (eds.), Delen in dementie: Onderzoeksreflecties, Maastricht: Maastricht University, pp. 12-19. Thane, Pat (2005): A History of Old Age, London: Thames & Hudson. Van Gorp, Baldwin/Vercruysse, Tom (2012): “Frames and Counter-Frames Giving Meaning to Dementia: A Framing Analysis of Media Content.” In: Social Science & Medicine 74/8, pp.1274-1281. Vink, Annemiek C./Bruinsma, Manon S./Scholten, Rob J.P.M. (2011): “Music Therapy for People with Dementia (Review).” In: Cochrane Collaboration 4, pp.1-48. Webster, Jeffrey Dean/Haight, Barbara K. (eds.) (2002): Critical Advances in Reminiscence Work: From Theory to Application, New York: Springer. --- /Bohlmeijer, Ernst T./Westerhof, Gerben J. (2010): “Mapping the Future of Reminiscence: A Conceptual Guide for Research and Practice.” In: Research on Aging 32/4, pp. 527-564. Westerhof, Gerben. J./Bohlmeijer, Ernst T./Webster, Jeffry D. (2010): “Reminiscence and Mental Health: A Review of Recent Progress in Theory, Research, and Intervention.” In: Ageing and Society 30/4¸ pp. 697-721. Woods, Bob/Spector, Aimee E./Jones, Catherine A./Orrell, Martin/Davies, Stephen P. (2005): “Reminiscence Therapy for Dementia (Review).” In: Cochrane Database of Systematic Reviews, 2. Art. No.: CD001120.

Opening Minds through Art Students’ constructions of people with dementia O LIVER R. H AUTZ He lost his Self a thousand times and for days on end he dwelt in non-being. But although the paths took him away from Self, in the end they always led back to it. (Hesse 1992: 13)

Before participating in Opening Minds through Art (OMA), a creative arts program designed for people with dementia, one of the attending students made the following statement: Having never had experience with someone who suffered from Alzheimer’s disease or dementia prior to that experience, I was scared when I first visited The Elm’s. I looked at dementia as a disease and something that needed to be fixed or cured and didn’t see it as part of the life course or the aging process. At first, I felt sad every week for the residents at The Elm’s and thought their quality of life wasn’t as high as other individuals. (Mary)

Given the prevalence of mostly negative images of dementia in terms of ‘loss of self’ or even ‘death in advance’ in the popular press and literature, many people might make similar statements upon their first encounter with a person with dementia. However, as this paper sets out to show, students who participated in a service-learning project involving people with dementia reported that their experiences challenged the negative preconceptions they had about people with dementia when they started the program, and moreover, that, after spending more time with them, they came to varying and at times strikingly different conclusions. The following example, taken from the journal of another student in the program, is exemplary:

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As the weeks progressed, I began to see how the adults at The Maples experienced a quality of life that I had never anticipated. They could be happy despite their cognitive impairments and still lead a meaningful life with family and friends. (Johanna)

In recent years, participating in intergenerational programs has become popular among younger adults seeking community service opportunities. Studies on service learning, i.e., the combination of classroom learning and community service, and its effects on students’ psychological, social, and cognitive development suggest that participating in such a project will change, and most likely increase, students’ positive attitudes toward the group of people with whom they are working (Batchelder and Root 1994; Stukas et al. 1999). McGowan and Blankenship describe this transformation as “ontological change” and explain that it occurs when people experience something that forces them to view themselves differently. This view of ontological change thus equates changes in selfunderstanding with self-change. It follows logically that changes in the self will ultimately cause changes in relationships with others. (1994: 590)

In this vein, Bliezner and Artale (2001) report that students who participated in a service-learning project with older adults described a reduction in the negative stereotypes they had about older people. They also expressed feeling more comfortable around older people and having more appreciation of the inter-individual variability among groups of older people (ibid.). However, while there is a large body of literature on service-learning projects and their effects on students’ development (e.g., students’ moral development, sense of self, leadership and communication skills), few studies explicitly explore service-learning projects involving people with dementia (Fruhauf, Jarrott, and Lambert-Shute 2004; Fruhauf 2007). Research on intergenerational programs involving people with dementia is rare, but is nonetheless important in light of the unique challenges that young adults might face when interacting with people who are cognitively impaired (Blieszner and Artale 2001; Fruhauf et al. 2004). To address the question of how students construct persons with dementia within the framework of such training projects and how their perspectives can change in the course of them, this study focused on one specific intergenerational creative art project in which students and people with dementia interacted. Opening Minds through Art (OMA) is a program developed in 2009 at a Midwestern University in the United States. It is designed to provide people with dementia the opportunity to express themselves creatively and to promote social engagement, autonomy, and dignity.

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The findings reported here are based on an accompanying study conducted from 2010 – 2013, exploring students’ constructions of people with dementia during their participation in this project (Hautz 2013). The focus is on how students’ experienced their interaction with the people with dementia and ultimately constructed them as persons: I was definitely kind of afraid of working with an elderly dementia patient before [participating in OMA]. But now my perception of older adults has completely changed. It sounds stupid, but now I look at elderly patients as real people. (Stacey)

O PENING M INDS

THROUGH ART In recent years, there has been an increase in the number of programs for people with dementia that use artistic modes of expression (e.g., painting, acting, and story-telling) to improve the quality of care in long-term care settings and the quality of life of people with dementia (Fritsch et al. 2009). Although limited in scope, several studies have already documented many of the effects of such creative expression programs (Kinney and Rentz 2005; Basting 2006). One of the key components in most creative expression programs is the interaction between the person with dementia and a family member, a staff member, or any other person involved in implementing the program (Basting 2009; Fritsch et al. 2009), thus bringing together the older adult with dementia and a (younger) person without dementia. OMA is a semester-long program designed to provide people with dementia the opportunity to creatively express themselves and thereby promote social engagement, autonomy, and dignity (Lokon, Kinney, and Kunkel 2012; Lokon 2008). Based on the principles of person-centered care introduced by Tom Kitwood (1997), one of the program’s key features is one-on-one interaction between volunteers and people with dementia. Each semester, student volunteers are paired up with a person with dementia and work together in weekly, hour-long art sessions for 12 weeks. For each session, OMA follows a particular structure to help ensure that the people with dementia experience the process of creating art as fully as possible. The sessions begin with what is called ‘the huddle,’ during which the students (volunteers) are familiarized with the art project and are given examples of the day’s activity, but also information about the people with dementia such as their particular needs and/or concerns. Later during a phase called ‘the inspiration,’ facilitators walk up to the artists (the people with dementia) and show them examples of art created with the same tech-

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nique that will be used in the session. Finally, they demonstrate the technique and distribute the necessary materials, allowing the people with dementia to choose some of these for themselves before beginning the creative activity. At the end of the session, the facilitators show the art works to all the participants, which allows the creators themselves to see what they were able to create (Lokon 2008: 28-36). The program takes place at different long-term care facilities each semester. In order to get students enrolled, the program facilitator gives a 10minute presentation to a variety of classes throughout the university at the beginning of each semester. The students then have the opportunity to apply to participate. Students are enrolled on a first-come, first-served basis without an additional selection procedure. Those who are accepted must attend several training sessions before taking part in the program.

D ATA COLLECTION

AND ANALYSIS In this study, Interpretive Phenomenological Analysis (IPA) was employed as a guide to sampling, data collection, and analysis. IPA is used to examine how individuals experience a social phenomenon in the context of their daily life (Smith, Flowers, and Larkin 2009). The question of this study is not so much whether people with dementia (still) possess a self, but rather how unaffected individuals attach meaning to their actions, and thus how they experience and construct persons with dementia in the course of interacting with them. The decision to focus on students who were participating in OMA was threefold: First, they did not share a history with the persons with whom they were partnered, and were thus more likely to be free of any preconceptions regarding the partner him- or herself. Second, the weekly art sessions strive to give people with dementia the opportunity to express themselves creatively and the main focus of this study is how students experience this expression of self or personhood. Third, during the weekly sessions, students and their partners interact in ways that go beyond the art project itself, and the program strongly encourages these kinds of interactions. Participants The study followed 26 students (24 female/two male), aged 19 to 22 years, who participated in the OMA program during the fall semester 2010. (The sample included all of the students enrolled for that semester.) Their fields of study ranged from business administration to gerontology and nursing.

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All the participants signed a consent form allowing the facilitators and associated researchers to use the data for purposes of their research. An IRB protocol was established at the start of the creative arts program and thus was already in place when the study began. Although people with dementia were not participants in the study, they were recruited for the program by the facilitator and the nursing home staff. Given the demographic in nursing homes and previous program participants, those who were recruited were mostly female, aged 60 and above, and diagnosed with different forms of dementia (e.g., Alzheimer’s disease and vascular dementia). As suggested by the fact that the participants lived on special dementia care units in their respective facilities, each of them demonstrated symptoms usually associated with dementia. The number of people with dementia who participated in the program matched the number of students in the study. However, at any particular weekly session, it was possible that there could be one or two people with dementia more or less than there were students because of illness, conflicting appointments, etc.). This meant that students did not necessarily work with the same person every week. Data and analysis As part of their participation, students were asked to write a reflective personal account about how they experience(d) working with their partner(s) with dementia as well as their overall experience of the program. Some received service-learning credit and were required to write reflections for at least six of the twelve sessions. Those not participating for credit had to write reflections for at least three sessions. However, students were allowed to write a reflective journal entry for as many sessions as they chose. The reflections were not graded, and students were not required to follow a particular format. Nevertheless, the students were given a brief description of how to write the journal entries (e.g., type-written and sent electronically to the program facilitator) along with some potential writing topics. Students could choose to write about whatever part of their experience they felt was the most important. Some of the suggested journal entry prompts pointed to the students’ perceptions of the program itself, and the students were asked to devote some of their journal entries to the issue of how they experienced and constructed the person with whom they were working.

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A total of 168 journal entries, written by 26 students, were analyzed using IPA. The stepwise analysis as described by Smith and colleagues (2009) was adopted and followed as closely as possible (Hautz 2013). The material was analyzed by first reading and re-reading each student’s set of journals, commenting on them, and then working with the student’s account and the researcher’s comments to develop emergent themes presented in the data. Next, the emergent themes were ordered and grouped into appropriate categories which made up a list of individual super-ordinate concepts (for each set of student journal entries). After reiterating steps one to four for all 26 students, the author looked for patterns across all cases, going back and forth between the individual cases and the whole data set (all journal entries for all students). Through this process, seven super-ordinate themes and their respective sub-themes were revealed (ibid.).

O PENING M INDS : H OW

STUDENTS CONSTRUCT ( ED ) THE PERSON WITH DEMENTIA The following section provides an overview of the super-ordinate themes that emerged in the analysis. Quotes from students’ journals that exemplify the super-ordinate themes are provided. This section is an overview of the findings and not an exhaustive description of what was found during the analysis. Altogether, the analysis of the journals revealed seven superordinate themes: ‘prior conceptions,’ ‘separating disease from person,’ ‘attributing,’ ‘personal background/history,’ ‘getting to know,’ ‘exchange partners,’ and ‘building a relationship.’ Each super-ordinate theme comprises several sub-themes.

Table 1. Super-ordinate themes (bold) and sub-themes (italicized) Theme

Definition

Prior conceptions

Assumptions about people with dementia

Dementia as a threat

Dementia induces something to be feared; students are anxious, nervous

Otherness

People with dementia as different, as a group set apart from normal individuals

Impairment

Assumption that partner could not independently accomplish tasks; student there to help

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Contested prior assumptions

Primarily negative assumptions changed through interaction with partner

Separating disease from person

Differentiating between the person and the disease

Seeing disease

Perceiving dementia as independent from partner

Locating

Materialization of the disease in the body, brain

Seeing the person

Partner as independent from dementia; partner as vehicle for dementia

Attributing

Ascribing certain personalitie(s) to partners

Description of the person

Detailing partner’s physical characteristics, personality traits

Differences within the person

Describing partner’s mood; potential to vary with each interaction

Differences between people

Describing partner as different from other people with dementia

Personal background/history

Importance of partners’ histories

Storytelling

Listening to and prompting partner to tell stories about his/her life

Relating the story

Ability to link partner’s stories to own experiences

Putting the puzzle together

Information about partner’s family and professional background; filling in the life story

Getting to know

Process of learning who artist is

Assuming

Student’s express partners feelings/reactions; uncertain about interpretations

Letting go

Partners, not students, lead pace, ambition, accomplishments of the session; free of expectations

Connecting

Sharing special moments; role of time; ability to identify/understand partner on a deeper level

Understanding

Student expresses partners’ feelings/reactions with certainty

Knowing

Confidence of interaction/reactions; feeling close; use of active voice

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Exchange partners

Partner as being able to receive and give

Students give

Partner as primary receiver in social interactions

Artists give

Student as primary receiver in social interactions

Mutual exchange

Both student and partner are equally giving and receiving in social interactions

Building a relationship

Extending interaction beyond simply spending time together

Desire

Student expresses wish to form a relationship with partner

Being close

Student describes a fairly strong form of bonding/being close

Making same

Similarities between student/partner; identification of experiences, behaviors, or characteristics

Evolution

Time as a primary element in the development of a relationship between student/partner

Friendship

Level of intimacy with partner that goes beyond the tasks of the program

Enduring

Interaction and friendship with partner has a lasting effect on the student

Prior conceptions Although the students came to the program with different understandings of dementia and different personal experiences with people with dementia, they shared many of the same feelings and assumptions about what it might be like working with them in the OPA program. These were categorized under the super-ordinate theme ‘prior conceptions’ (with sub-themes dementia as a threat, otherness, and impairment). This super-ordinate theme encompasses assumptions students had about people with dementia, e.g., what they thought it would be like to work with a person with dementia, how they thought people with dementia would behave or respond prior to their first sessions with their partners. Below is one example: Before I went to The Elms, I thought of long-term care facilities as dark, scary places with dying people. I was definitely a little afraid to go to the first session because I did not know what the facility would be like and what the patients would be like. (Allison)

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When expressing their assumptions about people with dementia, students pointed to different ways in which their preconceptions manifested themselves. Before their first session with the artists, they saw dementia as posing a sort of threat which they were not sure how to handle: I was very nervous and anxious on the ride over to the Elms simply because I didn’t know what to expect. I was terrified to say/do something wrong and upset my patient. I was also very afraid that I would get paired with someone who didn’t like me or didn’t want to work with me. (Chelsea)

Even though for some students this perception of dementia as a threat was based on prior experiences with institutions and/or individuals, the overall experience of anxiety and, in some cases, fear before the first encounter was common. However, almost all students quickly realized that their expectations about their partners were not accurate and their preconceptions were often undermined by their actual experiences. Hence, one sub-theme for prior conceptions is contested prior assumptions: I was definitely expecting the worst before I came in. I suppose I had stereotypes about what it would be like to work with dementia patients. I was expecting a nonverbal person who just sat there. The older adult I worked with was so different from that, in a great way. I had a great time working with him, and I cannot wait to go back to see him again. (Allison)

Separating the person from the disease Much of the students’ experience continued to be guided by certain conceptions about dementia and its implications for their partners. However, in the process of interacting with their partners, students began to reflect on the symptoms they observed, which changed their perspective somewhat by separating their partner from the disease itself. It appears that this process of separating the person from the disease was a reaction the students had to the differences between their preconceptions before the program began and the actual experiences they had with their partners. Thus, separating the person from the disease was a way for them to maintain – to a certain degree – their preconceptions about dementia (even though they had been contested), while making sense of the person sitting in front of them as someone who is, for example, not ‘scary.’ This super-ordinate theme was further distinguished into three subcategories: seeing the disease, locating, and seeing the person. Students treated their partners’ symptoms as individual entities that they possessed in the sense of owning something like a hat or a car, hence the

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sub-theme seeing the disease. For example, one student wrote: “She also gets to do artwork that aids in helping her dementia” (Carrie). Here, the student writes about artwork as being aimed at helping with something that is separate from her partner, namely the dementia as an entity of its own. It almost seems as if the student thinks there is a person who is actively trying to ‘fight’ something. Or, as another student says: Another reason [that I wanted to participate in OMA] is that I have never had someone in my life that has dementia, so I was very interested in seeing what it was exactly like to interact with someone who had it. (Lena)

What is interesting about examples like these is the students’ choice to write about their partner having dementia instead of ‘being demented’ or experiencing memory loss. While this might be common when talking about something considered a disease, this student’s choice to end the sentence with ‘who had it’ rather than ‘who had dementia’ points to the idea that dementia really is something in the student’s mind, even though it is nothing tangible. This can also be seen as a way to objectify the dementia and, with this, set it apart from the person the students were working with: “I also hope to learn and understand a little bit more about patients with Dementia [sic] and how it takes a toll on the aging process and the people it’s affecting” (Carrie). Overall, this super-ordinate theme of separating the person from the disease describes a process of how, over time, students began to perceive the dementia and the person they were working with as different entities. Dementia became something apart from the actual person and allowed the students to see the person despite their cognitive and functional limitations: “Martha is a phenomenal woman and I feel that because she has dementia, many people would write her off as not knowing what she’s talking about or simply not even care” (Chelsea). This student clearly perceives her partner as a real person and further projects that other people would not take her seriously or might even deny her the status of a full person. Attributing One of the prompts the students were provided with to help them write their reflective journals was tailored specifically to how they might describe the partner(s). The responses to this prompt were categorized into three different sub-themes: description of the person, differences within the person and differences between people.

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One of the most important steps for the students in constructing and seeing their partner was to ascribe a personality to them. One, writing in a very general fashion, said “I love being with Mara and her personality is just wonderful” (Lily). The same student gives a more differentiated description in the following excerpt: Mara is a very outgoing and witty woman. She loves to joke around and has a very sarcastic personality. She likes to give everyone grief and welcomes it in return. Mara is someone who you should never be afraid to joke around with. She enjoys being able to engage in friendly banter with someone and likes it when her witty comments are matched with other witty comments. She loves to talk about partying and often asks “so where’s the booze?” She is a woman who has genuine love of life and doesn’t want to miss a minute of it. (Lily)

After spending time with their partners, students were able to perceive differences in their moods and behaviors. The attributes they ascribed to their partners as a result were not fixed. The students constructed them as a person who would, just like anyone else, have a good or a bad day (differences within the person): “She was not in a very good mood on Monday but everyone has their bad days. She kept saying how she didn’t want to do the project and she doesn’t do art stuff” (Whitney). Additionally, the students did not construct people with dementia as being all the same. They were aware of the differences in their personalities and characteristics (differences between people) as shown in the following example: I have learned that they [their partners] are each as unique as anyone else and it is impossible to prepare for the experience. It is a matter of taking the time to get to know the artist [partner] and their own unique personality. (Whitney)

What is most important about the journal entries is that they showed how students experienced and constructed people with dementia as unique human beings. They set their partners apart from the other students’ partners, but could also see similarities between them. Personal background/history Having information about their partners’ background was fairly important for the students. They consistently sought information about the personal and/or professional backgrounds of their partners, although not always intentionally. Sometimes they obtained information by accident, usually as a by-product of their interactions with them. Students also actively gathered information by asking their partners, family members, program staff

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/volunteers, or nursing-home staff questions. Regardless of the source of and the approach to acquiring such information, almost all the students showed an interest in learning more about their partners. Altogether, the super-ordinate theme ‘personal background/history’ consists of four interrelated subthemes: storytelling, relating the story, putting the puzzle together, and making it personal. As the following excerpt from Sarah’s journal shows, students were generally eager to gather information about who their partners were in the past: Did she use to be a teacher or something? I don’t know much background information about her but I would love to know more. I know she has sons and daughters (maybe two of each), that she is from Minnesota and her Hebrew name, but that is about it. (Sarah)

Students also clearly articulated how important and enjoyable the stories their partners told them were: I especially loved listening to all of the stories that he shared with me about his life. I think that it is incredible to hear the stories of individuals whose lives have almost spanned an entire century. I could sit and listen to those stories for hours. (Lauren)

For some students, knowing more about the life of their partner and knowing that their partner wanted to share their life stories with them made the relationship stronger. As Chelsea notes about her partner, “I think her willingness to share her life stories with me is what makes us so much closer.” The stories, then, created the basis for the student and their partner(s) to connect with each other. In some cases, the stories provided a way to relate personally to their partners by linking them directly to their own background. For example, one student writes: This [OMA] has helped me in my personal life because of my great grandmother. Currently, she is in a nursing home and they are moving her to hospice [in] the next few days. She’s very forgetful and when visiting her, she doesn’t remember who anyone is. Although it is very sad and difficult for me, this [participating in the program] has helped me by letting me know that it’s not just her. (Claire)

Regardless of how the students made the stories personal, by deciding to share stories about their lives with them, the partners played a critical role in this process.

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Getting to know The super-ordinate theme ‘getting to know’ encompasses the students’ descriptions of and reflections about how they ‘got to know’ their partners. This category describes a more or less procedural component of constructing people with dementia as real persons. Five sub-categories are subsumed under this theme: assuming, letting go, connecting, understanding, and knowing. They characterize ways of getting closer to the partners and becoming familiar with them as unique individuals. This is exemplified by the students initially being somewhat unsure about their interpretations of their partners’ actions and reactions, as in this example: “Tim is a great man, but he doesn’t always verbally express his opinion of the project. He seems to be enjoying it and engaged in the art, he just doesn’t say so” (Allison). Throughout their participation and after spending some more time with them, students got to know their partners better and were also able to assess their intentions and/or feelings much better: “I got to know Gracie very well. I discovered just what to say or ask to get her into the project” (Whitney). Between initially wondering whether their partners enjoyed their time with them and feeling insecure about it, and later knowing what to say or ask, students went through a process of realization in which they had to change their ways of interacting with their partners. Thus, one student admits that her partner “tests my patience in a good way, and she is helping me learn what it means to encourage her versus what it means to take over the artistic activities” (Sarah). Finally, when getting to know their partners, students were able to recognize moments when the true ‘person’ shines through. Regarding her partner, Amy notes: In one memorable instance, Penelope was doing particularly well with the project that day and looked directly at me, and smiled and nodded in wonder at the art that she had just created. She cannot talk, and has more bad days than good, during which she is unresponsive or sleepy, and to have her connect to me that way was invaluable.

Thus, many times, the students’ letting go of prior ideas regarding how to interact with their partners also provided the basis for connecting with them. Exchange partners Throughout their participation in the program, the students noted how they thought the measures of social exchanges between them and their partners were going. Their social exchanges took a variety of forms, but were gener-

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ally described as working in three directions: First, there were exchanges where students clearly characterized their partner as being on the receiving end (students give): “It felt so good to know that I helped make her so happy for that period of time” (Claire). Second, there were instances where the students themselves were on the receiving end of the exchange (artists/ partners give), as indicated in the following example: I’ve learned to slow down. I tend to do everything in a rush and there is never enough time in the day. However, when I’m with Gracie I realize that there is nothing but time. Even though she never remembers me from the week before, at the end of each session she really does not want me to leave and seems happy to know I’ll be back next week. (Whitney)

Finally, throughout their interactions, the students described mutual exchange patterns where both sides were giving and receiving (mutual exchanges). For example, “I feel that we worked so well together that just as she was able to make me smile, I could do the same for her” (Carrie). Building a relationship The super-ordinate theme that can be thought of as the closing theme for the students’ experiences and at the same time as the one that most clearly shows the complex process they underwent during the program is “building a relationship.” Almost every student addressed this theme in his or her journal, some did so indirectly while others made it the main focus. One student, for example, writes: After the 6th visit, I believe that my relationship with my partner, Irene, has become much stronger. At the beginning, I was almost afraid to talk and was very nervous if she asked me a question (where her husband was, to go see the room next door, etc.). Now, I feel very comfortable interacting with her and helping her with anything she may need fixing[,] her lap pad, helping her move her arm, etc. (Claire)

This super-ordinate theme is made up of six distinct sub-categories (desire, being close, making same, evolution, friendship, and enduring) that describe the many facets of how students valued, perceived, interpreted, or constructed the relationship they experienced in interacting with their partner(s). Given how they described their initial fears and anxiety upon their first encounter with their partners and the often negative images these fears were based on, it becomes evident how much had changed for them after spending time with their partners and seeing them as real people instead of as shells, sufferers, or even zombie-like creatures. As Johanna notes,

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I recently talked about our relationship at my Teaching for America interview. Our friendship has given me a new perspective on race, ethnicity, and aging. I have also learned how important it is to take the time to get to know people I work with and learn their personal story.

Most strikingly, for some students the feeling of having formed a relationship carried over to their college life outside of the program (enduring). For instance, one of them admits: “I have actually thought about her on numerous occasions throughout the week and can’t wait to see her again on Wednesday” (Carrie).

C ONCLUSIONS : P ERSISTING SELVES – R ECOGNIZING THE IMPORTANCE OF HONORING THE PERSON WITHIN For a long time, people with dementia have been portrayed as empty shells, victims, sufferers, or burdens to society. The reasons for such portrayals are manifold, and, for many people, result from comparisons of people with dementia to something other than normal. Hence, referring to cultural stories about dementia, Zeilig states: The overall impression is of dementia as huge and ancient. It is beyond our grasp and can only be understood through reference to massive natural phenomena (usually disasters) or in biblical/mythical terms. (2013: 3)

Writing in the same vein, Behuniak (2011) neatly describes how the imagery of zombies has influenced the discourse and construction of people with dementia. She details seven dimensions or characteristics of zombies that can also be found in the literature on people with Alzheimer’s disease: appearance, loss of self, inability to recognize others, cannibalism, epidemic proportions, cultural terror and disgust, and death as preferable to life. The most significant of these is the loss of self. Herskovits argued that such conceptualizations of Alzheimer’s might lead to a “monsterization of senility” (1995: 153), damaging the status of the person with dementia as an actual person. ‘Shell,’ ‘sufferer,’ or ‘victim’ are just a few examples of the labels often used to describe those who experience the symptoms associated with dementia. Cohen and Eisdorfer claim that [i]n recent years, the brain disorders of later life have become a personal tragedy in millions of lives throughout the world. Both the victim and the family suffer with the inexorable dissolution of self. Loss of sight, hearing, an arm, or a leg challenges a person to cope with significant change. However, the victim of Alzheimer’s disease must eventually come to terms with a far more frightening prospect – the complete loss of self. (1986: 22)

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This is a good example of the kind of language that is often used to describe people with dementia (e.g., as victims). It reflects the common conception that the self of the person with dementia will eventually be lost completely, a process that has been described as the “unbecoming of self” (Fontana and Smith 1989: 45), a description which ultimately must end in denying those with dementia the status of a person. In contrast to these popular and sometimes abstract academic assessments that de-humanize and de-personalize the person with dementia, Richard Taylor, a retired psychologist who was diagnosed with dementia (probably of the Alzheimer’s type) writes: “I am still and will always be Richard. I am still a whole human being, as is everyone on the planet” (2013: 1). Taylor published a book in which he describes his personal journey from first being diagnosed with dementia to experiencing his own decreasing cognitive functioning and its effects on his perception of the world as well as the effect his condition has on those who care for him. He writes: Thou, yours truly, has started to become an It. Of necessity, my caregivers would argue, but nonetheless an It. The same words are used to represent me – Richard, Dad, Grandpa, my husband – but what follows does not refer to who I think and feel I am. My behavior is treated apart from me. ‘It’s not him, it’s the disease.’ Unfortunately, I am both, and to the extent the disease has altered my behavior and thinking, it has altered who I am. I am no longer who I formerly was. I am no longer like everyone, but there still is a good deal of me left. Am I half empty or half full? What difference does it make in terms of being a full and equal member of the family? It’s tough for everyone! My heart aches and I want to shout: I’m a different Thou, not a quarter It and three quarters Thou. (Taylor 2007: 150-151)

These excerpts from Taylor’s book, which exemplify his continuous need to remind the world that he is still someone and not something, indicate that the popular image of someone diagnosed with dementia is somewhat different from the actual lived experience of having it. This disconnect between what a person with dementia experiences and what those around that person experience may be attributable to the plethora of negative views and descriptions of dementia’s various manifestations (Harding and Palfrey 1997; Fazio and Mitchell 2009). Scholl and Sabat (2008) argue that recognizing the sources and potential threats of negative stereotypes toward people with dementia results in an improved quality of life for everyone concerned. Finally, the negative perception(s) in combination with discussions about the economic and social burden that a growing population of people with dementia might cause (Rice et al. 1993) will

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arguably challenge our perceptions of people with dementia and influence the debate about how to best care for them (Hughes, Louw, and Sabat 2006). People with dementia are neither shells, vegetables, already dead, nor zombies. To the contrary, they are breathing human beings who deserve the same respect and dignity as any other human being. The first step in recognizing this right of dignity and respect is to recognize each individual with dementia as a unique and valuable person in his or her own right. The data used for this research and the analysis of it indicate that even though in the beginning the students participating in the intergenerational art program OMA were apprehensive about their experience with their partners, they quickly realized that their partners were individuals in their own right. Students were able to distinguish among the variety of characteristics their partners displayed (e.g., inspiring, kind, cheerful, and positive), but, most importantly, they saw them as people from whom they could learn something. Hence, it might be time to create more opportunities for people with dementia to express themselves in an environment where their contributions to the lives of all those who surround them are appreciated. Such opportunities should be integrated into the curriculum of different learning environments (e.g., nurse training, college education, high school education, vocational training), because learning something about being human is valuable in all contexts. Hung and Chaudhury (2011) argue similarly that, for staff members, continuous education and training on the concept of personhood is essential for enabling them to support personhood. In doing so, we lay the groundwork for bringing people with dementia back to the center of society and, at the same time, learn something about their individual and unique worldviews. With regard to intergenerational servicelearning programs in particular, the findings of this study support the view that participating in a service-learning project with older adults can reduce negative stereotypes of people with dementia (Bliezner and Artale 2001). Furthermore, this study confirms that students are more comfortable being around older people and more appreciative of the inter-individual variability among groups of older people after participating in a service-learning project with older adults (ibid.). Furthermore, it is clear that integrating interpersonal interactions with people with dementia into the curricula of diverse kinds of educational training is important. Hence, the findings of this study have the potential to

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inform the development of training materials. By recognizing the process students went through while participating in OMA, learning materials could be tailored specifically to the various stages of students’ development in other such programs. Since this study represents only one segment of people who could benefit from such programs, further research should investigate similar hypotheses for staff in nursing homes and family members. Third, the findings not only show that information about the background and personal history of people with dementia is important for the construction of the person, but also that in this project students were actively seeking such information about their partners. This finding might be helpful in developing future programs or learning materials designed to strengthen participants’ recognition of the person with dementia by providing additional background information. Finally, the most important finding of this research is the realization that people with dementia are human beings who, despite certain perceived limitations in their cognitive functioning, are capable of providing invaluable insights into what it means to be human. The findings of this study most certainly support claims about the maintenance and persistence of self and personhood in dementia and, in this regard, one student’s voice should be granted the last word: For the volunteers, such as myself, we obtain the most valuable understanding of all, I believe. We are privileged to be afforded a look into the lives of those with dementia and with that comes the understanding of human dignity. (Amy)

R EFERENCES Basting, Anne (2006): “Arts in Dementia Care: ‘This Is Not the End…It’s the End of This Chapter.’” In: Generations 30/1, pp. 16-20. --- (2009): Forget Memory: Creating Better Lives for People with Dementia, Baltimore: Johns Hopkins University Press. Batchelder, Thomas/Root, Susan (1994): “Effects of an Undergraduate Program to Integrate Academic Learning and Service: Cognitive, Prosocial Cognitive, and Identity Outcomes.” In: Journal of Adolescence 17/4, pp. 341-355. Behuniak, Susan (2011): “The Living Dead? The Construction of People with Alzheimer’s Disease as Zombies.” In: Ageing & Society 31, pp. 70-92.

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Blieszner, Rosemary/Artale, Lisa (2001): “Benefits of Intergenerational Service-Learning to Human Services Majors.” In: Educational Gerontology 27/1, pp. 71-87. Cohen, Donna/Eisdorfer, Carl (1986): The Loss of Self: A Family Resource for the Care of Alzheimer’s Disease and Related Disorders, New York: W.W. Norton/Company. Fazio, Sam/Mitchell, David (2009): “Persistence of Self in Individuals with Alzheimer’s Disease: Evidence from Language and Visual Recognition.” In: Dementia 8/1, pp. 39-59. Fontana, Andrea/Smith, Ronald (1989): “Alzheimer’s Disease Victims: The ‘Unbecoming’ of Self and the Normalization of Competence.” In: Sociological Perspectives 32/1, pp. 35-46. Fritsch, Thomas/Kwak, Jung/Grant, Stacey/Lang, Josh/Montgomery, Rhonda/Basting, Anne (2009): “Impact of TimeSlips, a Creative Expression Intervention Program, on Nursing Home Residents With Dementia and their Caregivers.” In: Gerontologist 49/1, pp. 117-127. Fruhauf, Christine/Jarrott, Shannon/Lambert-Shute, Jennifer (2004). “Service-Learners at Dementia Care Programs: An Intervention for Improving Contact, Comfort, and Attitudes.” In: Gerontology and Geriatrics Education 25, pp. 37-52. --- (2007): “Helping Students Understand Aging and Dementia: An Innovative Program.” In: Dementia 6/1, pp. 157. Harding, Nancy/Palfrey, Colin (1997): The Social Construction of Dementia: Confused Professionals? London UK: Jessica Kingsley Publishers. Hughes, Julian/Louw, Stephen/Sabat, Steven (2006): “Seeing Whole.” In: Julian Hughes/Stephen Louw/Steven Sabat (eds.), Dementia: Mind, Meaning and the Person, New York: Oxford University Press, pp. 1-41. Hautz, Oliver (2013): Who Am I and Who Are You? Exploring Students’ Constructions of People With Dementia during a Creative Arts Project (Electronic Thesis). Retrieved from https://etd.ohiolink.edu/. Herskovits, Elizabeth (1995): “Struggling over Subjectivity: Debates about the ‘Self’ and Alzheimer’s Disease.” In: Medical Anthropology Quarterly 9/2, pp. 146-164. Hesse, Hermann (1992): Siddhartha. Trans. by Hilda Rosner, Delhi: Rupa. Hung, Lillian/Chaudhury, Habib (2011): “Exploring Personhood in Dining Experiences of Residents with Dementia in Long Term Care Facilities.” In: Journal of Aging Studies 25, pp. 1-12.

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Kinney, Jennifer/Rentz, Clarissa (2005): “Observed Well-Being among Individuals with Dementia: Memories in the Making, an Art Program, versus Other Structured Activity.” In: American Journal of Alzheimer’s Disease and other Dementias 20/4, pp. 220-227. Kitwood, Tom (1997): Dementia Reconsidered: The Person Comes First, Buckingham: Open University Press. Lokon, Elizabeth (2008): Opening Minds ThrougArt (OMA): An Art Program for People with Dementia (Electronic Thesis). Retrieved from https://etd.ohiolink.edu/. --- /Kinney, Jennifer/Kunkel, Suzanne (2012): “Building Bridges across Age and Cognitive Barriers through Art: College Students’ Reflections on an Intergenerational Program with Elders Who have Dementia.” In: Journal of Intergenerational Relationships 10, pp. 337-354. Lyman, Karen (1989): “Bringing the Social back in: A Critique of the Biomedicalization of Dementia.” In: Gerontologist 29/5, pp. 597-605. McGowan, Thomas/Blankenship, Sara (1994): “Intergenerational Experience and Ontological Change.” In: Educational Gerontology 20/6, pp. 589-604. Taylor, Richard (2007): Alzheimer’s from the Inside Out, Baltimore: Health Professions Press. --- (2013): “Alzheimer’s from the Inside Out. Current Newsletter,” November 26 (http://www.richardtaylorphd.com/). Rice, Dorothy/Fox, Peter/Max, Wendy/Webber, Pamela/Lindeman, David/ Hauck, Walter/Segura, Ernestine (1993): “The Economic Burden of Alzheimer's Disease Care.” In: Health Affairs 12/2, pp. 164-176. Scholl, Jane/Sabat, Steven (2008): “Stereotypes, Stereotype Threat and Ageing: Implications for the Understanding and Treatment of People with Alzheimer’s Disease.” In: Ageing and Society 28/01, pp. 103-130. Smith, Jonathan/Flowers, Paul/Larkin, Michael (2009): Interpretative Phenomenological Analysis: Theory, Method and Research, London: Sage. Stukas, Arthur/Clary, E. Gil/Snyder, Mark (1999): “Service Learning: Who Benefits and Why.” In: Social Policy Report 13/4, pp. 1-19. Zeilig, Hannah (2014): “Dementia as Cultural Metaphor.” In: Gerontologist 54/2, pp. 258-267.

‘Zip!’ Dementia materialized in clothing design S ONJA I LTANEN

This paper discusses materialization of dementia in clothing design. Lundgren (2000) applies the concept of materialization to discuss how ideals of care and assumptions regarding aging people take a material form in the design and decoration of long-term care environments. According to her, rather than relying on information gained directly from residents, care environments are designed according to assumptions regarding aging people and to meet the ideal of a homelike care environment (ibid.: 111). The concept of materialization is adopted here to describe how designers’ views of dementia are reflected in clothing. When discussing materialization of dementia, I argue for acknowledging designers’ role as cultural mediators. Lantz (2013: 18-19, 124) and Entwistle (2000: 221) situate designers within the larger fashion system that comprises cultural mediators working with production, marketing, buying, journalism, trends, and modeling. Moeran (2006: 726) argues that fashion items are both cultural products and commodities. The economical aspects are considered when designers negotiate the age-related changes in the human body as well as socially constructed views of aging (Iltanen 2007: 103-107; Twigg 2013: 128-130). According to McRobbie (2000: 258-261), designers are cultural mediators taking part in the construction of norms and ideals.

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In this paper, I discuss designers as cultural mediators negotiating the facts and views of dementia and the economical demands set by both the clothing industry and the care system. The aim is to describe and critically discuss materialization of dementia in the design of clothing – ‘design’ referring both to the process and the end product. The paper applies three viewpoints – material aspects, practices, and interpretations – to discuss themes relevant for design research and designers working with target groups with dementia. It also takes a closer look at one garment, the overall, in order to illustrate materialization of dementia. The last section aims to contextualize the interpretations made in this paper and points out issues that need to be acknowledged in future design and research.

E XPLORING CLOTHING

IN RELATION TO DEMENTIA In studying design in relation to aging, illnesses, and disabilities, the aim has most usually been to define ‘special needs,’ and to design specialized products to meet these diagnosis-based demands (e.g. Huck and Bonhotal 1997). However, the special needs-approach is often considered as stigmatizing, and claimed to fail in meeting the heterogenic needs of the aging population. Instead, approaches such as Inclusive Design, Universal Design and Design for All have been promoted to meet the needs of people of various ages and abilities in the design. Ideally, by applying an inclusive approach, the design escapes the risks of negative and positive discrimination and provides the manufacturer with a wider target group and thus increased sales (Coleman et al. 2003: 3, 10-13). Within fashion studies or the clothing industry, the Inclusive Designapproach is still rarely explicitly applied. Most studies discussing the relationship between garments and people with dementia apply a diagnosis-led approach and operate within the medical paradigm. These studies aim to define abilities and difficulties with clothing and to find ways to counteract the dementia-related changes. Lately, growing interest in culturally and socially constructed aspects of dementia has evolved within social sciences and design research. The ability to dress independently has been found to diminish due to dementia (Carpenter et al. 2006). Gendron and Lévesque (1993: 32) state that garments and fasteners that are difficult to reach and comprehend should be avoided as they may impede independence in dressing. Independency in dressing may be enhanced by occupational therapy (Baldelli et

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al. 2007), maintaining routines (Kobayashi and Yamamoto 2004), and improving interaction (Vogelpohl et al. 1996). Namazi and DiNatale Johnson (1992) suggest separating the cognitive process of choosing clothing from motor functions. According to Wherton and Monk (2008: 582), the abilities of a person with dementia are supported by the familiarity of objects and the living environment. Dementia has been found to increase the need for support and assistance (Volicer et al. 1987). However, Beck (1988) warns of excess disability created by assisting in situations when it is not necessary. In assisting people with dementia with dressing, the System of Least Prompts (SLP) has been proven to promote independence and diminish challenging behavior (Beck 1991; Engelman et al. 2003). However, Cohen-Mansfield and colleagues (2006: 94-95) found that promoting independence in dressing may be in conflict with the demands of the hectic care work. In Mahoney and colleagues (2013), family carers described assisting a relative with dementia as a process of adjusting to constantly changing and often uncomfortably intimate needs. Safety risks related to dementia may be diminished by certain garments. Garfinkel and colleagues (2008) found that with adequate counseling, hip protectors reduce the risk of hip fractures among people with dementia in institutional care. In a study by Ledsham and colleagues (2006: e100-e102), care staff and people with dementia supported the use of hip protectors due to safety issues but claimed that the protectors feel uncomfortable and hot, and hinder independent dressing and toileting. According to Twigg (2010; cf. Twigg and Buse 2013), clothing has the potential to maintain the embodied selfhood of people with dementia, provide pleasure or comfort, and contribute to them being treated with respect – but clothing is also a form of disciplining the body. In the literature, the fragmented notions of clothing chosen for people with dementia reflect these contradictions. Mahoney and colleagues (2013: 8) describe family members gradually moving towards choosing Velcro, elasticized waistbands, and pull-over tops for their relative with dementia. In a short commentary on “dementia clothing,” Grace recommends garments that reduce “unacceptable behavior of people suffering from dementia” (1998: 45), dresses open to the waist at the back or front, leisure suits, polo tops, buttonless cardigans and full-length pant suits with a concealed zip at the back. Twigg critically describes a similar set of garments as creating “the classic

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look of the dementia patient” (2010: 228). Parker (2005) describes the social construction of dementia as being deeply imbedded in the physical environment and care practices. In previous studies, the material aspects of the garment-body relationship are recognized, but the role of designers in constructing this relationship is ignored. This paper builds on two studies discussing the social construction of age, ability, and dementia in clothing design. The Patient Clothing Study investigated the practical and ethical issues in the design of patient clothing.1 According to designers, the design of patient clothing has ethical implications (Iltanen and Topo 2007a), for example creating or hindering the possibilities for agency in the context of long-term care (Iltanen and Topo 2007b). The experiences of people wearing patient clothing in a care facility are mainly negative: The outworn appearance and problems in protecting privacy were considered as a symbol of the low status and narrowed agency of the patient in the hierarchical hospital environment (Topo and Iltanen-Tähkävuori 2010). The Patient Clothing Study did not focus on dementia. However, dementia emerged during the research process, for example when discussing the hygiene overall designed to prevent undressing (Iltanen-Tähkävuori and Topo 2012). The following Design and Dementia Study examined the social construction of dementia in the design of garments and textiles more closely. 2 The results of analyzing dementia guides and short phone interviews with designers imply that textiles are applied for multiple, often contradictory purposes: to support, assist and restrict the agency of a person with dementia, manage safety risks and hygiene, and provide stimuli and comfort (Iltanen-Tähkävuori 2014). With this article, I aim to build on previous research and provide new information about the relationship between clothing and dementia as it is constructed by designers. The intention is to move towards a more detailed and contextualized understanding of materialization of dementia as it appears in clothing design. 1

2

The Patient Clothing Study was conducted during 2004-2008; data was gathered in 2004-2005 in Finland. The person in charge was PhD, Adjunct Professor in sociology and social gerontology Päivi Topo. The study was funded by The Academy of Finland (project number 205607). The Design and Dementia Study was conducted during 2009-2014; data was gathered in 2009-2010 in Finland. The person in charge was Doctor of Art, fashion designer Sonja Iltanen. The study was funded by The Academy of Finland (project number 127086).

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ANALYZING

OBJECT ELICITATION INTERVIEWS WITH DESIGNERS For the analysis presented in this paper, a defined data set was selected from the aforementioned Patient Clothing Study as well as from the Design and Dementia Study, comprising interviews and objects.3 In both studies, object elicitation interviews were conducted with experts taking part in designing garments and wearable textiles for the care environment in Finland (cf. Iltanen and Topo 2015). These experts are later referred to as designers. From all the interviews, those designers explicitly discussing dementia were included in the data analyzed for this paper – twelve were interviewed in the Patient Clothing Study and eight in the Design and Dementia Study. The designers (n=20) represent 13 companies, the majority (90 percent) of all designers working with garments targeted at people with dementia in Finland. Fifteen of them are female and five male. One has a designer education, others originate in business (n=7), textile technology (n=6), care work (n=4), and industrial laundry (n=2). There were two object elicitation interviews with each designer or a team of two experts regularly working together. In the first interview, designers chose a sample of their work and discussed the sample present at the interview. In the second interview, the designers discussed the samples of others. Photographs were taken separately from the research process to illustrate the findings.4 At the beginning of the first interview, designers chose a garment to represent ‘good design’ for the target group. These garments are later referred to as designers’ samples. The samples chosen to be analyzed here are designed either to include people with dementia (five outfits, including seven items) or designed specifically for people with dementia (four items). All garments are designed to be used in various care environments: private homes, assisted living environments, and/or institutional care facilities.

3 4

Please visit https://sites.google.com/site/sonjailtanen/ for a description of all data gathered in the studies. The source for all photographs represented in this paper is the archive of Sonja Iltanen (photographs by Sirpa Hammar, copyright by Sonja Iltanen). Models were recruited for photo sessions only and did not participate in the research as informants. Informed consent and agreement to publish the photographs in electronic and print media were obtained in writing and ensured verbally during the photo shoot session.

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The analysis focused on the relationship between body and clothing rather than garments as objects (cf. DeLong 1998; Entwistle 2000). Van Leeuwen and Jewitt (2001: 4-5) argue that images serve as documentary evidence of reality, but also as evidence of how and why their maker has reconstructed the reality in the image in a certain manner. Similarly, garments in these data were viewed as evidence of the material environment of people with dementia, but also as reflections of culturally constructed interpretations of dementia. The analysis process followed the guidelines for studying the apparel-body construct by DeLong (1998): The elements of a body-clothing relationship were first observed (ibid.: 25-164), then studied in relation to one another (ibid.: 165-206), and finally interpreted in relation to the context (ibid.: 251-296). In addition, methods for visual content analysis (Rose 2012: 81-104) and visual discourse analysis (ibid.: 189-260) were applied. First, material aspects were studied. The details of designers’ samples were observed and measured, results were verbalized, and the verbalized data was structured into a table format. Interviews were transcribed verbatim and coded using Atlas.ti software to structure the data. As a result, the data was structured to provide easy access to individual samples of designers and the details of these samples (such as material, color, collars, fasteners, length, and width). This data was coded and restructured to study the relationships between details in one garment. Additionally, the garmentbody relationship of a potential user was studied, including the symptoms of dementing illnesses considered relevant for clothing design. The results are represented in the chapter “Material aspects.” Second, the details were studied in relation to the context. The structured data was coded by Atlas.ti according to certain themes: practices of the clothing industry and dementia care, and interpretations made concerning people with dementia. The analysis involved moving between the material data and the verbal data. The results are represented in the chapters “Practices,” “Interpretations,” and “Case: Overall with a zip at back.”

R ESULTS Material aspects This chapter describes the material aspects of the garment-body relationship as they are represented in the data. The product names and gender definitions derive from the interview data and brochures of patient clothing

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companies. The designers usually represent the user with dementia as rather old. However, the designers do not actually participate in choosing particular garments for a certain age or gender of users – these choices are made when buying garments and assisting the care recipients. In the data, there are seven items (five outfits) that, according to designers, are designed to include people with dementia. 

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Leisurewear (also called a tracksuit) (figure 1): Jacket and trousers made of dark blue polyester-cotton knit, pink piping for color-coding of size S. The jacket has an O-neckline, six large buttons in the front, rib knit in sleeves, and one pocket in the hem. The jacket front is made of printed multicolored polyester knit. The trousers have an elasticized waist, rib knit in legs and two pockets. Unisex. Male outfit (figure 2): Blouse and trousers made of dark blue polyestercotton knit. The blouse has a rib knit in sleeves and one pocket, a fake shirt with collars and large buttons attached to the blouse, made of brownish, checked polyester. The trousers have an elasticized waist, straight legs, and two pockets. Male. Dress (also called a wheelchair dress) (figure 3): Calf-length dress, open at the back with overlapping panels, partially open in front with three large buttons. Made of polyester, floral print with purple shades. Collars, one pocket. Elasticized sleeve ends. Female. Hip protectors: Pants with short legs, made of white cotton-polyester knit. Hard protective pads at both hips, stored behind a zipper that opens from downwards. Lace-like elasticized band at waist and legs. Female. Bib: Large bib with a large pocket at the hem. Bright red polyester. Unisex.

In addition, the data includes four items designed specifically for people with dementia. 

Overalls (also called a hygiene overall) (figure 4): A one-piece suit with a long zip at the back. Two versions: one with green terry polyester-cotton knit, long sleeves and legs, zip starting from the back of the neck and ending at the inseam of the right leg; another with pink plain polyester-cotton knit, sleeveless but with long legs, zip starting from the back of the neck, going between the legs and ending in front at the waist. Unisex.

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

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Safety vest: Sleeveless vest made of dark blue, durable polyester, with strengthened neckline in front. Six large buttons at the back. 128 cmlong bands. Unisex. Therapy apron (figure 5): An apron made of white-blue striped polyester. Six elastic balls (5 cm diameter) in the hem, sewn between the layers of fabric. Bands made of same material, length 120 cm. Unisex. Therapy mittens: Mittens with no fingers made of white-blue striped polyester. One elastic ball (5 cm diameter) between the outer material and the lining. White Velcro ribbons, length 47 cm. Unisex.

Fig. 1. Leisurewear

Fig. 4. Overalls

Fig. 2. Male outfit

Fig. 3. Dress

Fig. 5. Therapy apron

According to dementia guides and short phone interviews with designers, dementia affects physical and cognitive functioning and behavior, and thus alters the relationship between textiles and people (Iltanen-Tähkävuori 2014). Similar results are found in the object interviews with designers. Table 1 presents designers’ accounts of dementia-related changes, effects of these changes, and solutions applied in the design of garments. Two themes

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present in the dementia guides were missing in the object elicitation interviews: dressing apraxia (inability to perform the movements related to dressing due to damage in the brain) and decline in communication, both related more to practices of assistance than the design of products. Table 1. Dementia-related changes, effects of changes, and solutions applied in design of garments Changes

Effects of changes

Solutions applied

Physical changes Stiffness Decline in muscular strength and motor skills

Difficulties with dressing Need for assistance

Soiling of garments

Decline in coordination and balance, low gait Incontinence

Falling Hip fractures

Memory loss Decline in perceptive skills

Wishes to move combined with limited abilities Not adjusting to new types of products

Need for assistance Incontinence pads Soiling of garments

Soft, knit materials Loose fit, large armholes Large buttons, fasteners in front Pockets in front Elasticized waist in trousers Fake shirt collar Bib Rib knit in sleeves Patterned front and darkish colors to camouflage soiling Easy-maintenance materials Rib knit in legs of garments Hip protectors Overlapping panels in dress Extra room in trousers to allow use of incontinence pads Easy-maintenance materials

Cognitive changes Safety vest, therapy apron Zip concealing the pad upside down in hip protectors Dress open at back Overall with zip at back

Challenging behavior Refusing to dress

Difficulties in assisting

Loose fit, large armholes Large buttons, elasticized waist Fasteners at back

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Disrobing

Socially disturbing

Overall with zip at back

Anxiety Behavior with safety risks

Damage to garments or skin by repeated touching Eating small items

Soft, knitted materials Elastic balls to provide stimuli Therapy mittens No buttons in front Elastic balls between durable materials Overall with zip at back

Removing diapers Smearing with feces Hurting oneself or others, scratching Removing medical equipment

Safety vest, therapy apron, therapy mittens Durable materials Fasteners at back

Practices This chapter describes the practices of the clothing industry and dementia care that become materialized in garments chosen as designers’ samples in this study. In the interviews, designers’ explicit aims are mostly beneficent. They claim that the garments they chose to represent good design in this study support and assist people with dementia, manage safety hazards and hygiene, and provide stimuli and comfort. The beneficent aims become materialized in many elements of the garments, such as materials that are soft, flexible, and easy to care for, and patterns and colors that hide soiling of the garment. To some extent, designers also aim to provide opportunities for self-expression with the design of these garments. For example, when designing leisurewear (figure 1), the male outfit (figure 2), and the dress (figure 3), they choose elements that, in their opinion, meet the preferences of the older people: dark blue or brownish colors, floral pattern, and loose fit. The beneficent aims are diluted by the controversial finding that designers often explicitly aim to design garments that function as restraints. All the items designed specifically for people with dementia – overalls, safety vest, therapy apron, and therapy mittens – are designed to restrict the person from acting or moving. The data shows that designers sometimes take advantage of the decline in cognition and memory of the users. For example, in the hip protectors, the removable pad is hidden in a pocket that is fastened with a reversed zip. According to designer 15, this was a conscious decision, as they noted during the test period that people with de-

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mentia could not open the reversed zip. Another example is the dress that has false buttons in front to hinder independent undressing, and overlapping panels at the back to support assisting with toileting. In addition to the needs of the user and the context of use, designers as cultural mediators are expected to address practices in the fashion system: manufacturing, marketing, sales and buying (Iltanen 2007). As we noted in Iltanen and Topo (2007a), designers working with patient clothing additionally need to address issues related to competitive bidding, care work, and industrial laundry, and this applies to designing garments for people with dementia as well. Designers represent industrial laundries as powerful parties as they not only maintain the products designed for the care environment, but often also own the products. Industrial laundries and care institutions usually purchase products by competitive bidding, following comparisons of costs related to purchases, logistics, and the laundry process. Acknowledging these issues in design usually leads to unisex garments accommodating a variety of bodies. Designers choose materials that tolerate the very high washing and drying temperatures of industrial laundry. To facilitate logistics, established methods for color-coding of sizes are applied in some garments. The color-coding derives from the standard defining design of patient clothing such as pajamas and dressing gowns (SFS 1997: 29-81), but has diffused to other garments as well, as is seen in the pink piping marking size S in leisurewear (figure 1). According to designers, dementia care is physically and mentally straining work that needs to be lightened by the design of garments. Care workers may be helped by solutions that facilitate assistance when dressing and undressing a person with dementia, such as durable materials and seams, loose cut, and large buttons. Designers also claim that the strain on care workers may be reduced by garments that make managing incontinence, safety, and challenging behavior easier for the staff. In the data, this usually results in garments that are aimed at hindering independent undressing, moving, and using hands. Interviews with designers show that the needs of care organizations and care staff are often prioritized if found to contradict with the needs of the person with dementia. Prioritizing organizational needs leads to limited possibilities of meeting the appearance norms of our society when wearing garments designed for people with dementia. This is most clearly seen in the products that resemble garments usually worn by young children: the bib and the overall.

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Previous products influence the design process of patient clothing, shaping conceptions of what is possible, expected, and accepted (Iltanen/ Topo 2007a). Changes in garments designed for people with dementia are slow, but they do occur. One example is the extinction of the dress from the collections of companies represented in this study. Between data gathering in 2004 and 2010, the dress practically disappeared and was replaced with leisurewear. Designers explain the change by aims to facilitate care work, changes in the preferences of older people, and the emergence of the new female cohorts used to trousers entering the care facilities. Interpretations This chapter discusses designers’ interpretations of people with dementia and how their conceptions are materialized in garments. In the object elicitation interviews, designers described the characteristics of the target group of other designers based on the material features of their samples. Designers seem to be in internal conflict when discussing garments designed for people with dementia, and this conflict is reflected in biased rhetoric. They aim to be as discreet and correct as possible in their verbal expressions. They talk of people with dementia as frail elderly in need of personalized clothing in the homelike care environment. However, designers also eagerly stress the physical and mental strain that symptoms of dementia put on the people caring for them. Activities of people with dementia appear as problematic: Undressing is considered to be socially disturbing and wandering and aggressive behavior are often mentioned. Further, people with dementia are commonly represented as soiled by either food, urine, or excrement. In some cases, they are also represented as easy to fool by misleading design – a characteristic taken advantage of to hinder the actions of the person with dementia. The conflicting interpretations of dementia are reflected in garments that include both beneficent and maleficent elements. In the garments, ideals of normality, the homelike care environment, and personalized care clash with the norm violation and restraining practices of care work. The contradictions are further reflected in the product names, which include positively associated words referring to leisure, hygiene, safety, and therapy – even in the restraints.

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Case: Overall with a zip at back To illustrate materialization of dementia, I present designers’ accounts of the overall with a zip at the back (figure 4). There are two overalls in the data: one with a zip that ends in the inseam of the leg, the other with a zip that goes between the legs and ends at the waist in front. The overall summarizes many aspects of products designed for people with dementia: It is explicitly designed for people with dementia, includes both beneficent and restrictive elements, and is unisex. Although the context of this study is Finland, the overall appears to be used in many Western countries. Wikipedia recognizes the overalls by referring to them as “locking clothing” intended for “older adults with old-age conditions such as Alzheimer’s disease” (Wikipedia 2014). Overalls are marketed for people with dementia receiving institutional or home care in countries such as Germany, France, Sweden, Canada, Australia, and the United States. Additionally, a British company is marketing an overall that, in addition to the zip, includes a lock that “securely” fastens the zipper at the back and “a key for the nurse to keep.”5 However, dementia experts in Britain stress that restraints are against British law in dementia care and are thus not used. Therefore, the use of overalls remains an open question in dementia care in the UK. Iltanen-Tähkävuori et al. (2012) present an earlier version of interpreting data gathered in the Patient Clothing Study. Rereading the earlier data and combining it with new data gathered in the Design and Dementia Study reveals a more detailed account of the overalls. Most of the time, the designers discuss the overalls as just another product – describing and assessing the product and the design process neutrally. In the more recent data from the Design and Dementia Study, many designers present the overalls as “good business”; sales are constantly improving and new markets have been found in home care. Some designers provide object biog5

Examples of marketing material published in the Internet: Germany: http://www.suprima-gmbh.de/su/pflegetextilien/produkte/pflegeovera lls/ France: http://www.ab-shopping.com/pyjamas-grenouilleres.html Sweden: http://www.sittingfeather.se/nattklader Canada: http://www.creavie.qc.ca/acreavie/ Australia: http://www.easywearaustralia.com.au/catalogue/catalogue.php?catid= 5 US: http://www.buckandbuck.com/womens-clothing/womens-jumpsuits/back-zi p-jumpsuits/knit-back-zip-overalls.html UK: http://www.adaptawear.com/AllinOne+Night+and+Underwear/0_CAAA03 2.htm?page=All-in-One_Night___Underwear

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raphies of the overalls. Designer 11, working for an industrial laundry, states: It was early 1990s. We got this early prototype of an overall among other dirty laundry, made of blue duvet cover. We knew which care home had made it, and they had made more than one. That’s how we realized that they really need these overalls. And they explained it as well: It was because of this problem with incontinence pads.

The designers present the overalls as a restraint. According to them, people with dementia are sometimes in need of restriction for two reasons: disrobing and/or smearing with urine or feces. In Finland, the use of other types of restraints is strictly regulated – ordered by a doctor for a certain patient, specified reason, and limited time. However, overalls have not been considered as restraints and thus the use has not been regulated by law but depending on the practices of care facilities and individual nurses. Designer 13 states that there is a danger of routine use in institutional care: I know some larger care facilities where everyone is clothed with overalls in the evening, just because it is easy. […] The nurses put the overalls on [the persons with dementia] just to simplify their own work, and don’t consider who really needs it.

The designers recognize the negative aspects of restraints, but often represent the overalls as ‘better than’ other options for treating challenging behavior. Designers discuss the overalls as functional: They claim that the overalls facilitate care work as they decrease the need for monitoring, laundry, and cleaning. This is necessary, especially for people with low cognitive abilities and high functional performance – in the words of designer 6, “the really handy and quick.” To stress the functional need, designers describe the consequences of not using the overall by referring to nudity, urine, and feces – sometimes crossing the line of vulgarity. Provoked by the critique presented towards the use of the overall, designer 10 portrays what happens if they are not used: Then the patients rip the diaper off, or they go to the toilet and don’t put it back [on]. And then it’s wet everywhere, and their shoes just squelch when they walk around.

Some designers refer to the overalls as medicine: either used like medication for challenging behavior or instead of pharmaceuticals. Designer 20 criticizes this: I do recognize the need for using the overalls, it’s because of challenging behavior. But the overalls shouldn’t be used like a painkiller for a headache. One should first find out why the person is behaving like that.

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The overalls are also described as dignifying since it is claimed that they prevent the person with dementia from socially disapproved behavior such as public nudity or smearing. Designer 11 states: “The overall protects the patients. They cannot go to the lobby and take the incontinence pads off, and have poo everywhere.” There is also concern for what the person would want if she or he were mentally alert. The designers assume nudity and smearing to be unwanted actions for the person, and wish to prevent these situations from happening. Designers describe the everyday life of family caregivers as 24/7 care work with no rest. Compared to criticism towards professional care staff, family caregivers are empathized with, including when they choose to make their relative use the overall. Overalls are represented as a relief for family caregivers in their struggle with incontinence and disrobing, especially at night. Some designers even claim that family caregivers should understand the overalls as a relief, but often do not. Designer 13 describes family members’ resistance towards the use of overalls in institutional care or at home as resulting from a lack of knowledge: If we only got the relatives to understand that it’s not a shame to wear the overall. […] Many of the relatives have never been involved with care work before, and the need [for overalls] strikes like lightning. It must feel odd. For us who are more involved, it feels quite natural.

The beneficent aspects are contrasted with descriptions of overalls as sources of stress for the wearers. The one-piece garment covering the whole body and the zip at the back may create uncomfortable feelings, and the use of incontinence pads adds to the discomfort. As a result of itching and other negative feelings, the people wearing the overalls may begin desperate attempts to get rid of the uncomfortable items by ripping and cutting the garment. There is evidence in the data of this sort of behavior. Designer 3 states: “We sometimes get overalls that have been torn apart with teeth.” Designers represent overalls as aesthetically insignificant in the context of dementia. It is claimed that aesthetic and expressive needs are insignificant for people with dementia because, as designer 10 states, “they are not in this world anymore.” Many designers claim that instead of visual elements, the design of the overalls needs to focus on functionality. Designers largely accept the current appearance of the overalls and suggest camouflaging the negative aspects such as the zip with a cardigan. Designer 18

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questions the ethics of aiming to achieve a visually pleasing design of a restrictive product: “I don’t know if you even should think of the aesthetics of the overalls. It’s like trying to make a straightjacket look nice.” Some designers criticize others for neglecting the needs related to aesthetics and self-expression. They claim that the lack of respect for the person with dementia is visible in the poor technical quality of the garment, such as the use of cheap machinery, mismatching colors, and low-cost fabrics. As designer 3 states, one reason seems to be the routines of the design work: “We sometimes fall asleep, and are not alert to the needs of the user, and then we just repeat the old design.” When assessing the garments in the data, the designers certainly aim to be professionally neutral. However, the overalls often receive reactions that at first appear to be viewing them as amusing. This occurs especially when tried on during the interviews by the researcher or the interviewees. The designers recall seeing an older gentleman wearing pink overalls, or a line of “grannies” in a corridor of a care home waiting for their evening meal, all dressed in overalls. The laughter resulting from these visual images is clearly a way of dealing with the contradictions and conflicts of their work as designers of an ethically biased product. Designer 20 ironically describes a combination of products targeted at people with dementia: “The overall nicely matches the anti-slip footwear, and the bib. That would include all the elements for becoming a baby again.” The overalls are seen as infantilizing in many ways. Many designers mention that the overalls are just like the rompers used by small children. According to designer 13, the pattern-making process for the overalls is very similar to children’s wear. When looking at the overalls, many designers reminisced about the terrycloth used in children’s playsuits in the 1970s. The designers point to similarities in the situation of use as well: incontinence, spending most of the time in bed, and lack of autonomy regarding the use of a diaper and the garment covering it. The infantilizing effect is sealed with the garment’s commonly used nickname, the direct translation from Finnish to English being “a bunny suit.” Designers often represent the overall as stigmatizing due to visual and material references to incontinence and dementia. Designer 2 claims that the zip that is placed out of reach and visibly marks the genital area feels demeaning. The stigmatizing effect is further emphasized by the heavy material and nonmatching color of the zipper, and the loose fit and one-

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piece design of the garment. When asked to explain why an “innocent zip” creates such feelings, designer 2 summarizes the materialization of dementia in the design of clothing: It’s placed in front of the genitals. Your attention is drawn to the genital area because of the zip, and the different shades of red: the zip is purple, and the overall is more brownish. The zip makes it visible that this person has an incontinence pad that needs to be changed. Why does one need a pad then? It’s because of peeing and pooing in your pants. […] The zip is like an exclamation mark in this garment.

This case study has revealed contradictions in the ways dementia is materialized in clothing design, involving both practices in dementia care and interpretations of people with dementia. However, we need to remember that the overalls are not just a reflection but material reality in the lives of many people with dementia. The ambiguity of garments designed for people with dementia needs to be debated but we also need to take action on the problematic issues discussed in this article.

C ONCLUSIONS : M OVING TOWARDS

ENABLEMENT This paper has revealed how dementia is materialized in clothing design. The results show that designers take part in this process as cultural mediators within a larger network of professionals. The paper has demonstrated materialization of dementia as involving controversial emotions, aims, and outcomes. In the interviews, designers mostly approach dementia as problematic in relation to clothing, discussing intimate issues in late-onset dementia such as disrobing, wandering, aggressive behavior, incontinence, and smearing. Needs related to expression of the self and social roles are acknowledged by most designers, but given diminishing importance as dementia progresses. Giving the complex demands set by care facilities and industrial laundries, a high priority in the design process diminishes the agency of the end user, the person with dementia. As a result of this process, the garments in the data often include stigmatizing, infantilizing, and restraining elements. However, negatively perceived features are often merged with therapeutic elements and beneficent aims regarding safety, hygiene, and meeting the norms of our culture. To understand designers’ actions, this paper has investigated material aspects, practices, and interpretations related to garments designed for people with dementia. The viewpoints are relevant for the design profession and design research. However, the broad spectrum of viewpoints applied may be seen as a limitation, as it prevents deeper discussions on each topic

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and escapes theoretical discussions within established disciplines. Researchers within social, technical, and medical sciences should deepen the discussion with their specialized knowledge and theoretical backgrounds. Contrary to many qualitative studies, the data of this study represents the population well: Nearly all the designers working with garments targeting people with dementia in Finland were interviewed. The method of object elicitation was found to be useful in studying the material and intimate issues related to dementia. The study confirms that when talking about clothing, people reveal their knowledge, assumptions, norms, and values related to the body wearing it (cf. Iltanen 2007). However, including designers’ samples in the data is potentially harmful: Although the interviewees were provided with anonymity, they are in danger of being recognized due to representing companies that operate within a minor branch of the clothing industry in one country. The designers were aware of this danger, and seemed to carefully consider the reactions of their audience – the readers of this paper, for example – and to tone down their descriptions of dementia. The results presented are based on analyzing specific data. However, viewing the subject from a slightly different angle may provide new interpretations. For example, I have encountered the garment discussed in the case study – the overall with a long zip – in contexts other than dementia care. These accounts reflect the complexity of the uses and interpretations of overalls. The first example is a ‘onesie,’ a one-piece garment popular among young people, made of thick knit, with a heavy zip visible in front. When presenting the results regarding the overall, I regularly receive comments stating – usually with a faint smile – that the fashionability of the onesie makes the overall acceptable. The connotation of it being a fashion item needs to be acknowledged, but in my interpretation it aggravates the negative aspects of the overalls instead of alleviating them. I encountered the second example when browsing the Internet to find references to overalls in the international context. “The Original Institute” is a website that includes a comprehensive list of companies selling overalls that are “made from a very robust and rip proof material --- to prevent the patient removing his or her nappies (diapers) and thus being able to smear feces and/or undressing [sic].” Testimonials of users at the end of the lengthy web page reveal the use of the overall in this context: “This is a very effective ‘locking’ garment; with the additional emotional features of

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humiliation & domination.” The fact that the overalls designed for people with dementia are used for sadomasochistic actions clearly points out the restrictive nature of the garment. The third example is the observation jumpsuit used in prisons in Finland. It has a zip at the back to prevent the inmate from undressing and to facilitate supervision of defecation when smuggling drugs and illicit objects into the prison is suspected. Since 2005, inmates have appealed against the use of observation jumpsuits. In March 2013, the Parliamentary Ombudsman (2013) stated that Finnish prisons should not continue to use the jumpsuit, as it “restricts a prisoner’s free will and right of self-determination.” A year later, the inmates won their case in the European Court of Human Rights. At the time of writing this paper in late 2014, the act regarding the use of the observation jumpsuit is still pending. Ethical issues related to representation and restrictions need to be further discussed. According to Frosh (2002: 184), stereotypes are materialized in cultural products, and often repeated without critical thinking. It is a challenge for future design to openly discuss the presumptions, values, and norms that affect the work of designers within this field. Only after moving beyond the beneficent talk is it possible to move towards changes in the design. According to De Bellis and colleagues (2011), people with dementia have an increased risk of being physically restrained in care facilities – justified by safety, but in fact increasing safety hazards, incontinence, anxiety, and deaths. This paper supports this notion by describing garments designed for people with dementia that include physically restraining elements. I argue that the global markets of the overalls with zippers in the back call for the concept of restraint to be modified. Recognizing garments of this sort as a restraint would allow critical discussion and alternative solutions to be found. In Finland, the overall has been recently recognized as a restraint. During the writing process of this paper, it became included in a draft for legislation regarding the autonomy of people receiving care. 6 In the draft of the act, it is suggested that use of the overall should be prohibited in institutional care environments in Finland (Finlex 2014: 118). I would direct further studies towards enablement rather than disablement as the environment has great potential for supporting people with dementia (cf. Day et al. 2000). However, I stress that this cannot be 6

Päivi Topo (PhD, Adjunct Professor), the person in charge of the Patient Clothing Study, participated in the working group preparing the draft.

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achieved unless the current disabling practices and products are studied and their mechanisms fully comprehended. Designers work in tight conjunction with care institutions and industrial laundries, which, on the other hand, operate within tight budgets and demands set by law. To change the garments – and the material environment in general – it is essential to include people with dementia and to co-operate on multiple levels of design, care, and research.

R EFERENCES Baldelli, Maria/Boiardi, R./Ferrari, P./Bianchi, S./Huscott Bianchi, M. (2007): “Dementia and Occupational Therapy.” In: Archives of Gerontology and Geriatrics Supplement 1, pp. 45-48. Beck, Cornelia (1988): “Measurement of Dressing Performance in Persons with Dementia.” In: American Journal of Alzheimer’s Care and Related Disorders & Research May/June, pp. 21-25. --- (1991): “Dressing for Success: Promoting Independence among Cognitively Impaired Elderly.” In: Journal of Psychosocial Nursing 29/7, pp. 30-35. Carpenter, Iain/Hastie, Charlotte/Morris, John/Fries, Brant/Ankri, Joel (2006): “Measuring Change in Activities of Daily Living in Nursing Home Residents with Moderate to Severe Cognitive Impairment.” In: BMC Geriatrics 6/7. Cohen-Mansfield, Jiska/Creedon, Michael/Malone, Thomas/Parpura-Gill, Aleksandra/Dakheel-Ali, Maha/Heasly, Christopher (2006): “Dressing of Cognitively Impaired Nursing Home Residents: Description and Analysis.” In: Gerontologist 46/1, pp. 89-96. Coleman, Roger/Lebbon, Cherie/Clarkson, John/Keates, Simeon (2003): “From Margins to Mainstream.” In: John Clarkson/Roger Coleman/ Simeon Keates/Cherie Lebbon (eds.), Inclusive Design: Design for the Whole Population, London: Springer, pp. 1-25. Day, Kristen/Carreon, Daisy/Stump, Cheryl (2000): “The Therapeutic Design of Environments for People with Dementia: A Review of the Empirical Research.” In: Gerontologist 40/4, pp. 347-416. De Bellis, Anita/Mosel, K./Curren, D./Prendergast, J./Harrington, A./MuirCochrane, E. (2011): “Education on Physical Restraint Reduction in

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Dementia Care: A Review of the Literature.” In: Dementia 12/1, pp. 93110. DeLong, Marilyn Revell (1998 [1987]): The Way We Look: Dress and Aesthetics, New York: Fairchild Publications. Engelman, Kimberly/Altus, Deborah/Mosier, Michael/Mathews, Mark (2003): “Brief Training to Promote the Use of Less Intrusive Prompts by Nursing Assistants in a Dementia Care Unit.” In: Journal of Applied Behavior Analysis 36, pp. 129-132. Entwistle, Joanne (2000): The Fashioned Body: Fashion, Dress and Modern Social Theory, Cambridge: Polity Press. Finlex (2014): HE 108/2014 vp. October 13. Frosh, Paul (2002): “Rhetorics of the Overlooked: On the Communicative Modes of Stock Advertising Images.” In: Journal of Consumer Culture 2/2, pp. 171-196. Garfinkel, Doron/Radomislsky, Zorian/Jamal, Samira/Ben-Israel, Joshua (2008): “High Efficacy for Hip Protectors in the Prevention of Hip Fractures among Elderly People with Dementia.” In: Journal of American Medical Directors Association 9, pp. 303-318. Gendron, Marie/Lévesque, Louise (1993): “Evaluating the Functional Autonomy of Persons with Alzheimer’s Disease: A Tool for Observing Four Activities of Daily Living.” In: American Journal of Alzheimer’s Care and Related Disorders & Research March/April, pp. 24-35. Grace, Maureen (1998): “The Importance of Dignity, Convenience and Suitability in Dementia Clothing.” In: Australian Journal of Holistic Nursing 5/1, pp. 45. Huck, Janice/Bonhotal, Barbara (1997): “Fastener Systems on Apparel for Hemiplegic Stroke Victims.” In: Applied Ergonomics 28/4, pp. 277282. Iltanen, Sonja (2007): From Mini-skirts to Granny Dresses: Industrial Fashion Design and Practices of Middle-aged Women Constructing Social Age [Minihameesta mummonmekkoon: Teollinen vaatesuunnittelu ja keski-ikäisten naisten vaatekäytännöt sosiaalista ikää rakentamassa], Helsinki: University of Art and Design Helsinki. (https://shop.aalto.fi/ media/attachments/b9828/Iltanen_final.pdf). --- /Topo, Päivi (2007a): “Ethical Implications of Design Practices: The Case of Industrially Manufactured Patient Clothing in Finland.” In: Proceedings of Design Inquiries: The Second Nordic Design Research

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Conference, May 27-30, 2007, Stockholm (http://www.nordes.org/ opj/index.php/n13/article/view/168). --- /Topo, Päivi (2007b): “Patient Clothing, Agency of Persons in LongTerm Care and Ethics: Designers’ Views [Potilasvaatteet, pitkäaikaishoidossa olevan ihmisen toimijuus ja etiikka: Vaatesuunnittelijoiden näkemyksiä ].” In: Gerontologia 3, pp. 321-245. --- /Topo, Päivi (2015): “Object elicitation in interviews about clothing design, ageing and dementia.” In: Journal of Design Research 13/2, pp. 167-184. Iltanen-Tähkävuori, Sonja (2014): “Textiles in the Social Construction of Dementia: Material Issues, Interpretations and Practices in Dementia Guides and Phone Interviews with Designers [Tekstiilituotteet muistisairautta rakentamassa: Materia, tulkinnat ja käytännöt muistioppaissa ja suunnittelijoiden puhelinhaastatteluissa].” In: Gerontologia 28/2, pp. 83-98. --- /Wikberg, Minttu/Topo, Päivi (2012): “Design and Dementia: A Case of Garments Designed to Prevent Undressing.” In: Dementia 11/1, pp. 4959. Kobayashi, Nami/Yamamoto, Mariko (2004): “Impact of the Stage of Dementia on the Time Required for Bathing-Related Care: A Pilot Study in a Japanese Nursing Home.” In: International Journal of Nursing Studies 41, pp. 767-774. Lantz, Jenny (2013): Trend Makers: Behind the Scene of the Global Fashion Industry [Trendmakarna: Bakom kulisserna på den globala modeindustrin], Stockholm: Atlas. Ledsham, Robert/Boote, Jonathan/Kirkland, Audrey/Davies, Sue (2006): “What is it Like to Use Hip Protectors? A Qualitative Study of the Views and Experiences of Nurses and Patients.” In: Clinical Effectiveness in Nursing 9S1, pp. e97-e105. Lundgren, Eva (2000): “Homelike Housing for Elderly People: Materialized Ideology.” In: Housing, Theory and Society 17, pp. 109-120. Mahoney, Diane/LaRose, Sharon/Mahoney, Edward (2013): “Family Caregivers’ Perspectives on Dementia-Related Dressing Difficulties at Home: The Preservation of Self Model.” In: Dementia [in press; online September 2013]. McRobbie, Angela (2000): “Fashion as a Culture Industry.” In: Stella Bruzzi/Pamela Church Gibson (eds.), Fashion Cultures: Theories, Ex-

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plorations and Analysis, London and New York: Routledge, pp. 253263. Moeran, Brian (2006): “More Than Just a Fashion Magazine.” In: Current Sociology 54/5, pp. 725-744. Namazi, Kevan/DiNatale Johnson, Beth (1992): “Dressing Independently: A Closet Modification Model for Alzheimer’s Disease Patients.” In: American Journal of Alzheimer’s Care and Related Disorders & Research, January/February, pp. 22-28. Parker, Jonathan (2005): “Constructing Dementia and Dementia Care: Daily Practices in a Day Care Setting.” In: Journal of Social Work 5/3, pp. 261-278. Parliamentary Ombudsman (2013): “Observation Jumpsuits are an Intervention in Prisoner’s Fundamental Rights,” Press Release, August 3 (http://www.oikeusasiamies.fi/Resource.phx/eoa/english/pressreleases/p ressreleases.htx?templateId=5.htx&id=960). Rose, Gillian (2012 [2001]): Visual Methodologies: An Introduction to Researching with Visual Materials, London: Sage. The Finnish Standards Association (SFS) (1997): SFS Handbook 126: Hospital Textiles [SFS-käsikirja 126. Sairaalatekstiilit.], Helsinki: SFS. The Original Institute (2014): “Locking Clothing,” March 17 (http://www. theoriginalinstitute.com/LockingClothing.htm). Topo, Päivi/Iltanen-Tähkävuori, Sonja (2010): “Scripting Patienthood with Patient Clothing.” In: Social Science & Medicine 70, pp.1682-1689. Twigg, Julia (2010): “Clothing and Dementia: A Neglected Dimension?” In: Journal of Aging Studies 24, pp. 223-230. --- (2013): Fashion and Age: Dress, the Body and Later Life, London: Bloomsbury Academic. Twigg, Julia/Buse, Christina (2013): “Dress, Dementia and the Embodiment of Identity.” In: Dementia 12/3, pp. 326-336. Van Leeuwen, Theo/Jewitt, Carey (2001): “Introduction.” In: Theo van Leeuwen/Carey Jewitt (eds.), Handbook of Visual Analysis, London: Sage, pp. 1-9. Vogelpohl, Theresa/Beck, Cornelia/Heacock, Patricia/Mercer, Susie (1996): “‘I Can Do It!’ Promoting Independence Through Individualized Strategies.” In: Journal of Gerontological Nursing, March, pp. 39-42. Volicer, Ladislav/Seltzer, Benjamin/Rheaume, Yvette/Fabiszevski, Kathy/ Hertz, Lawrence/Shapiro, Rita/Innis, Phyllis (1987): “Progression of

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Alzheimer-Type Dementia in Institutionalized Patients: A CrossSectional Study.” In: Journal of Applied Gerontology 6/1, pp. 83-94. Wherton, Joseph/Monk, Andrew (2008): “Technological Opportunities for Supporting People with Dementia Who are Living at Home.” In: International Journal of Human-Computer Studies 66, pp. 571-586. Wikipedia (2014): “Locking Clothing,” March 17 (http://en.wikipedia.org/ wiki/Locking_clothing).

Challenging representations of dementia in contemporary Western fiction film From epistemic injustice to social participation

A NDREA C APSTICK , J OHN C HATWIN , & K ATHERINE L UDWIN To do criticism is to make harder those acts which are now too easy. (Foucault 1982: 33)

Fiction film is one of the most influential vehicles for the popularization of dementia. It is likely to have a particular influence on the way dementia is constructed by society at large, not least due to its consumption in the guise of entertainment. In this paper, we will argue that such popularization is rarely innocent or unproblematic. Representations of people with dementia in film tend to draw heavily on familiar tropes such as global memory loss, violence and aggression, extreme dependency on heroic carers, catastrophic prognosis, and early death. Audiences may therefore uncritically absorb discourses which reinforce negative stereotypes and perpetuate the biomedical orthodoxy that everything a person with dementia says or does is ‘a symptom of the disease.’ Following Basting’s (2009) view that at present, much of the cultural production around dementia reinforces rather than resists stigmatization, in this chapter, we problematize fictional representations of people with dementia in Western popular film. We do so from the perspective of critical realism. That is to say, we take the view that dementia is an ontological reality – “a recognizable, age-related syndrome characterized by disturb-

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ances of memory (particularly short-term memory), generalized confusion (particularly in time and space), and problems with language that may be either expressive (for example word-finding problems) or receptive (difficulty in understanding others’ speech)” (Capstick and Clegg 2013: 240). Dementia can, in this view, therefore be represented accurately or inaccurately, and whilst certainly subject to social construction, is not reducible to social construction alone. As Maxwell puts it: Critical realists [...] retain an ontological realism (there is a real world that exists independently of our perceptions, theories, and constructions) while accepting a form of epistemological constructivism and relativism (our understanding of this world is inevitably a construction from our own perspectives and standpoint). (2012: 5)

The first part of the chapter draws on Fricker’s (2007; 2008) concept of epistemic injustice to explore the ways in which people with dementia are currently spoken for, and about, in film aimed at a mass audience. It is important to stress that we are not so much concerned with the aesthetics of these representations as with their ethics: the question of whether they do justice to the broader constituency of men and women living with dementia. Because the theme of this volume is ‘popularizing dementia,’ we focus on made-for-box-office cinema, UK and US TV drama, and soap. We have, however, made reference at points to arthouse or independent film. A certain amount of artistic license is unavoidable in film made for purposes of entertainment. Recent years have, however, seen a growth in concepts such as ‘cinemeducation’ and ‘edutainment’; that is, the use of mainstream fiction film in the education of health and social care practitioners. Some advocates of these approaches appear to take little account of the potential for film to mislead or reinforce existing prejudice. In the second part of the chapter, we therefore apply basic principles of film and representation theory to the films recommended by cinemeducators such as Alexander and colleagues (2005) for teaching about dementia. Here we argue that, since there are numerous different conceptual tools for ‘reading’ film, student practitioners do not merely need to be shown films in order to enhance their understanding of the conditions represented in them, but also need to learn to apply theory in order to explore how film might work to construct and perpetuate particular ways of seeing dementia. In the final section, we counterpose some examples from our own participatory filmmaking study, Bay Tree Voices. This project was carried out in a day care environment with people with dementia, and consists of a

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series of ‘naturalistic encounters’ (Capstick and Chatwin 2012). Bay Tree Voices draws on principles of participatory video, an approach in which people whose voices are socially marginalized or unheard become active participants and have control over the outcomes (Milne et al. 2012). It attempts to introduce into the film-making process the mutuality and rapport which Chatwin and colleagues (2007) identify as vital in health care encounters. We do not claim that these films present the truth about dementia, by contrast with the fictional sources discussed. People with dementia are far too diverse and varied a population for this ever to be possible. We suggest, however, that in keeping with Fricker’s thesis they go some way toward restoring epistemic justice.

E PISTEMIC INJUSTICE Fricker (2007) coins the term ‘epistemic injustice’ to draw attention to the ease with which particular social groups can be deprived of their status as ‘knowers.’ According to her, epistemic injustice may manifest itself in two forms: hermeneutical injustice and testimonial injustice. Hermeneutical injustice is the failure of interpretation by a hearer or audience member due to a deficient interpretative repertoire from which the authentic voice of the speaker (the person with dementia in this case) is already absent. This results in a “gap in collective understanding […] owing to the relative powerlessness of the social group to which the subject belongs” (Fricker 2008: 69). Testimonial injustice is the consequent tendency for the misinformed hearer to infer that members of the disadvantaged group in question are, by definition, unreliable testators. As Fricker points out, such injustices are most apparent at certain ‘hotspots’ in social life where it is in the interests of the powerful to perpetuate the existing misinterpretation. It is clear that society’s current response to people with dementia is one such hotspot. Indeed, Fricker notes that epistemic wrong bears a social meaning to the effect that the subject is less than fully human. […] Such a dehumanizing meaning, especially if it is expressed before others, may make for a profound humiliation […] [I]n those cases of testimonial injustice where the driving prejudicial stereotype explicitly involves the idea that the social type in question is humanly lesser […] the dimension of degradation […] is a literal part of the core epistemic insult. (2007: 44 [own emphasis])

In the case of fiction film, of course, the whole intention is to ‘express before others.’ Representations of dementia as the loss of human status, or

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living death, feed all too easily into real-world public debates about the ‘burden of care,’ the social cost of improving services, and – particularly insidiously – about euthanasia. Johnstone found, for example, that metaphors used in media sources, such as the “epidemic metaphor” of dementia as contagious disease and the “military metaphor” of dementia as an alien invader, “influence the way people think and behave about the disease [sic] and its treatment options – including medically assisted death” (2013: 390). Epistemic injustice and dementia While the concept of epistemic injustice has been applied to structural prejudices related to gender, disability, ethnicity, and sexual orientation, it has not previously been applied to dementia as a locus of injustice. We argue here, however, that dementia serves as a paradigm example of Fricker’s (2007) thesis, in that people with a diagnosis of dementia are frequently presumed to be unreliable narrators, unable to give a meaningful account of themselves or their lived experience. Fricker’s work has clear ethical and theoretical resonance with Kitwood’s (1997) seminal deconstruction of the medical model of dementia and particularly his typology of common personal detractions against people with dementia. Kitwood argues that personal detractions (or ‘insults’) such as invalidation, disempowerment, ignoring, and disparagement can exacerbate the experience of dementia and contribute to a decline in ill-being that is relatively independent of neuropathology (ibid.: 46). Baldwin’s (2008) work on the narrative dispossession of people with dementia also has features in common with Fricker’s concept of testimonial injustice; the stories of individual people with dementia are disbelieved and discounted because they are judged incompetent by virtue of their diagnosis. Traditionally, hermeneutical injustice towards people with dementia has been evident in many standard texts on dementia. Pitt asserts, for example, that in dementia, “sometimes it seems as if the true self dies long before the body’s death, and in the intervening years a smudged caricature disintegrates noisily and without dignity into chaos” (1982: 39). Evidently this is not a way of talking about people with dementia in which they are expected to participate or have any right to self-determination. In recent years, much work has been undertaken in the fields of dementia theory, practice, and education to challenge this form of objectifying language and imagery (cf. George 2010). Mainstream audio-visual media still, however, regularly

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perpetuate such views. In strikingly similar imagery to Pitt’s, for example, an episode from the 2005 UK TV drama series Afterlife (ITV, 24 September 2005) could claim on behalf of a character with dementia, “[i]t’s Alzheimer’s; it’s worse than death. The brain dies and the body carries on without it.” This is an image of the person with dementia as less than human. Indeed, Behuniak (2011) points out that one of the more prevalent cultural metaphors for dementia – that of the living death or ‘death that leaves the body behind’ – casts people with dementia in the role of zombies. This is a particularly insidious form of mind-body dualism which not only perpetuates negative stereotypes but also fails to engage with evidence of capacities that remain intact in dementia, such as emotional, long-term, and procedural memory. Hermeneutical injustice of the kind perpetrated in Afterlife results in the formation of homogenizing assumptions about people with dementia collectively; that they are, for example, mindless, insensate, and incapable of meaningful communication. This, in turn, impacts on assumptions about the capacities of individual people with dementia and leads to the second category of epistemic injustice Fricker (2007) identifies: testimonial injustice. The utterance of any individual person with a diagnosis of dementia is likely to be subjected to suspicion, discounted, or disbelieved. A particularly pernicious aspect of testimonial injustice, according to Fricker, is that instances of coherent and reliable narrative on the part of a member of a disparaged group are dismissed as ‘atypical’ of the group as a whole. Brown and Clegg (2007) note, for example, that staff often disbelieved accurate claims made by care home residents with dementia about their former lives. We have also experienced epistemic injustice in the academic review of work we have carried out with participants with dementia (Ludwin and Capstick [unpublished]). Here, the reviewer’s comments dismissed the accurate socio-historical recall of two people we worked with – Henry and Florence – as untypical of ‘variation in the category.’ The reviewer implies that the intact long-term memories of Henry and Florence are the exception rather than the rule for the ‘category’ of people with dementia generally. It is, however, well-established that in dementia, memory for emotionally charged events in childhood and early adulthood often remains strong, even when short-term memory is seriously compromised (cf. Leyhe et al. 2009). The reviewer’s comments are therefore an example of testimo-

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nial injustice against Henry and Florence personally and hermeneutical injustice against people with dementia generally. Problematizing representations of people with dementia in mainstream film In the context of film specifically, hermeneutical injustice can be considered part of what is sometimes described as the pro-filmic event, or ‘repertoire of elements’ from which the film is composed (Monaco 2001). Here the concept of the trope is a useful one, referring to the key messages, storylines, or genre-specific devices upon which a film turns. These tropes must be quickly recognizable by an audience and, as a result, mainstream film is particularly prone to stereotyping entire social groups on the basis of one or two easily recognizable characteristics. Fricker describes this form of negative stereotyping as “a widely held disparaging association between a social group and one or more attributes” (2007: 35). Whilst little critical analysis of the portrayal of dementia in visual media has taken place until recently, the representation of people with mental health problems has been problematized for many years. In films touching on mental health issues generally, stereotypes such as the crazed killer, the madman-genius, or the reclusive deviant are frequent, in spite of the fact that they do not accurately represent the vast majority of people who experience mental health difficulties (Helsby 2005). As Cassey (2005) notes, this is often because the representation of mental illness in film is angled to suit the needs of the plot and producers (i.e., the market) and melodramatic, sensationalist, or emotionally manipulative representations are more profitable than those that strive for ‘authenticity.’ Research by Hulko (2009) has shown that negative views of dementia on the part of people with a diagnosis are by no means as frequent as has been generally assumed. Such undramatic findings are, however, unlikely to provide a box office draw, or high TV audience ratings. Substitution of inauthentic ‘stock characters’ and perpetuation of media stereotypes therefore remain frequent devices. To give one small example, in Rise of the Planet of the Apes (Wyatt 2011), the onset of Alzheimer’s disease for the character played by John Lithgow is signaled by his loss of ability to play the piano. Piano playing involves procedural memory, however, and this – together with memory for music generally – is far less prone to damage in dementia than short-term memory (cf. Cuddy and Duffin 2005). We cannot,

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of course, claim that no person with dementia would ever lose the ability to play the piano, but the problem with such representations is that audiences are prone to generalize from them and infer that dementia inevitably involves the loss of creative skills and enjoyment of life, when this need not be the case. We suggest then that all mainstream films need to be approached carefully, using what Ricœur (1970) terms a hermeneutics of suspicion; that is, an interpretative approach which assumes that the surface meaning of a text is an attempt to conceal underlying political interests that are served by that text. The purpose of interpretation is, in Ricœur’s view, to strip away these superficial concealments in order to unmask the interests behind them. Similarly, Cassey (2005) asks us to consider the question: Who benefits from this particular representation? Film and the public imaginary The imaginary is a term initially adopted by Freud (1888) to describe the way in which physical manifestations of neurosis did not follow the normal rules of anatomy. The imagined body, this is to say, conforms to popular understandings of how its parts are linked together rather than to anatomical fact. Later sources have drawn on this concept to highlight how human subjects must try to make sense of external reality by means of a stream of fragmented and momentary sensory impressions, of which film is a striking example. Lebeau (2001: 54) draws attention to Metz’s concept of film as a “technique of the imaginary” (1982), noting that Metz is not merely emphasizing the fact that the content of fiction film is an invention. Metz also points to the increased likelihood – by comparison with other fictional forms, such as novels – that film will be believed, precisely because it involves moving images and therefore a heightened sense of reality. In examples such as the one discussed below, the apparently benign social realism of a TV drama makes its acceptance as a faithful representation of diagnosis, assessment, and prognosis in dementia more likely. The UK television series Frankie (BBC, 2013) is a 6-part drama series about a community nurse. The first episode focuses on Walter Thomas, a male character in his 80s who is living alone in the community following his wife’s recent death. Walter has diabetes, and in the course of administering his insulin, Frankie, the eponymous community nurse, notices apparent signs of the onset of dementia. Despite the known association between

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diabetes and secondary dementia, there is no mention of differential diagnosis during this episode, or indeed of a diagnostic process of any kind. Treatable causes of Walter’s confusion (such as an infection) are not considered. When he reacts to Frankie as though she were an intruder, this is not opened up to interpretation in the social context of crime against older people or media-fuelled fear of such crime. Instead, it is presented as one of a sequence of aberrant behaviors, all of which are treated as symptomatic of neurodegenerative disease. Individually trivial mistakes on Walter’s part (for example setting off the fire alarm, not knowing how to operate the oven, and eating pie for breakfast) are treated as though they are part of the dementia syndrome. These behaviors are pathologized in Walter’s case in a way that would not be possible with any other social group. Note also that genre is important in the way we are cued to read film; a 20-year old character who ate unorthodox things for breakfast and was technologically inept would almost certainly appear in a situation comedy. This episode, however, positions Walter as needy and helpless, without retained skills or knowledge. Loneliness, grief, or mere ineptitude in the use of household equipment are not considered as causal or contributory factors in his predicament. By the end of the episode, the situation has deteriorated to such a point that Walter is taken away, protesting, to an institution. Here, a process that would, in real life, be likely to unfold over a period of several years is squeezed into a few days in the TV storyline and less than an hour of actual viewing time. The likely impression on the audience of the narrative order of events in dramas such as Frankie is that people with dementia are subject to rapid and disastrous decline and will quickly need to be institutionalized for their own and others’ safety. In TV soaps, where events generally unfold in real-world chronological order, it is also noticeable that characters with dementia frequently meet a premature end from other causes. This avoids the loss of dramatic impact that would result if dementia followed its usual gradual progression over several years from diagnosis to death. So, for example, Mike Baldwin, a character in the longrunning UK soap Coronation Street, whose dementia-related storyline generated significant media and public interest in 2005-2006, died of a heart attack just six months after his on-screen diagnosis, at the age of 63. More recently, another Coronation Street character, Lesley Kershaw, whose dementia was of even earlier onset died from accidental electrocu-

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tion seven months after her storyline was introduced in October 2011. This repeated combination of early-onset, rapid decline, and premature death in characters in a popular soap is likely to have a profound influence on the viewing audience. It suggests, for example, that dementia is a condition that people quickly die from rather than live with and that their prognosis is very poor. To date, there has been a dearth of characters with dementia in TV soaps who continue to appear over a realistic timescale, have storylines unrelated to their diagnosis, or contribute positively to their family and community. Outlaws, bad cops and good cops: Crime drama and dementia In the genres of crime drama and psychological thriller, representations of men with dementia are typically taken out of the domestic sphere and situated in contexts of illegality and corruption which carry veiled implications of what we might call ‘retributory pathology.’ TV drama series such as the UK The Fear (Channel 4, 2012) and US Boss (Starz, 2011) suggest that dementia may be a punishment for a criminal or morally unscrupulous past. In each of them, a powerful and abusive male character is ultimately brought down, not by former adversaries or people he has wronged, but by the ravages of rapidly progressing brain disease. Richard Cottan who wrote The Fear acknowledges that “for dramatic purposes,” in order for central character, gang boss Richie Beckett’s, dementia to become obvious to the audience within four episodes, he researched Alzheimer’s “with a vascular component [which] adds rapid degeneration to the disease’s other problems” (Vine 2012). Whilst progression in vascular dementia tends to be stepwise rather than gradual, the suggested research does not appear to have been particularly thorough, since vascular dementia is no more likely than Alzheimer-type dementia to lead to the kind of catastrophic decline represented in The Fear. Here, we are given the impression of a disease entity which strikes like a punitive thunderbolt rather than the gradual onset of a cognitive problem which might be experienced by anyone through no fault of his or her own. In the US crime thriller Boss, central character Tom Kane is the morally and politically corrupt mayor of Chicago (“I am a bad man, and I’ve done bad things”). Kane goes to extreme lengths to conceal his diagnosis of Lewy-body dementia. His attempts to repudiate suggestions that he has visited a neurologist imply that cognitive disability is shameful. At the

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same time, the viewer is made complicit in witnessing the symptoms Kane hides from the outside world, including uncontrollable shaking and incontinence, which he can only keep under control with high doses of medication. Here, neurological disease is presented as a greater barrier to holding high public office than naked self-interest. By contrast, the Scandinavian noir series Wallander, based on the novels of Henning Mankell, takes the more nuanced approach typical of this genre. The sub-plot relating to detective Kurt Wallander’s dementia unfolds gradually, his lapses of memory and oversights easily attributable to other reasons for several episodes. Wallander solves his final case in spite of his diagnosis, and the series ends with his retirement party, on a note, if not of hope, of qualified acceptance. Similarly, Swinnen (2012) notes that in the Swedish film Wellkåmm to Verona, the main character, a man with dementia, maintains a unique identity and varied social roles including those of skilled seducer, convincing actor, and persistent lover.

T HE ROLE OF FEATURE FILM IN DEMENTIA EDUCATION : D ANGEROUS REPRESENTATIONS So far, we have been concerned with the general societal impact of epistemic injustice in filmic representation of people with dementia. As educators as well as researchers, we are, however, particularly concerned with the use of film in curricula for health and social care practitioners. There is a widespread perception that arts-based teaching is invariably beneficial in practitioner education and that introducing film, literary fiction, and other arts media into the curricula followed by health and social care practitioners will have a humanizing effect (cf. Smith et al. 2006). Downey and colleagues, for example, suggest that “[f]ilms, used as case studies, can deepen a student’s engagement with the subject matter and characters, permitting the student to empathize, identify, and develop feelings of closeness, respect, affection, revulsion, fear, [and] anger” (2003: 403). Whilst enthusiasm for arts-based education has led to the opening up of valuable fields of enquiry such as medical humanities and narrative health care, the potential for art to deceive or misrepresent also needs to be borne in mind. We find disturbing, for example, Logan’s suggestion that fictional representations of ‘female psychopathy’ (including Dangerous Liaisons) can be used to improve rates of diagnosis for this condition in real life because they will enable practitioners to “understand the phenomenology of

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psychopathy in this group” (2011: 18). This claim is based on the assumption that the fictional representations in question are accurate and authentic. This is a dangerous territory for medical humanities since it is almost certain that the characters and their actions will have been created for dramatic effect and to suit the requirements of a plot. They cannot be treated, in any sense, as clinical case studies. Alexander and colleagues (2005), in Cinemeducation: A Comprehensive Guide to Using Film in Medical Education, are among the main proponents in recent years of the use of mainstream feature film in practitioner education. Their basic thesis is that film can make education more entertaining and bring medical conditions to life. “Movies are perfect for capturing learners’ attention. […] Using the material that can be found in this book, we will all have a much easier and more successful time” (ibid.: xiii), a clinical professor writes in the foreword. For teaching dementia specifically, the authors recommend that the feature film Iris (Eyre 2001) be used to facilitate medical students’ understanding of “the importance of maintaining a routine and schedule for a patient with Alzheimer’s disease” and “the impact of caregiver strain” (Alexander et al. 2005: 64). Here, it is implied that the discussion of such questions in the context of film viewing will provide facts about living with the condition in question. Morris (2010) also recommends using the film Iris to teach about dementia, alongside two more recent films, The Notebook (Cassavetes 2004) and Away from her (Polley 2006). He acknowledges that viewers may have difficulty in distinguishing between reality and fiction and that many films carry “distorting and stigmatising” (Morris 2010: 146) portrayals. By comparison with Alexander and colleagues (2005), Morris’ argument in favor of using film is orientated more toward fostering empathy with the fictional characters than to deducing facts from the storyline. At the same time, however, he also puts significant emphasis on such properties of film as its being “attractive and engaging” (ibid.: 143), “enticing” (147), and involving “charismatic and appealing stars” (149). This again emphasizes filmwatching as hedonistic entertainment rather than subject matter for the development of critical thinking skills. In the next section, we will therefore first look in more detail at some of the different theoretical paradigms from which feature films on dementia might be viewed as a mode of representation.

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Theories of representation: From mimesis to deconstruction Helsby (2005) points out that representation theory has, over the years, passed through three main phases (see table 1). In the first phase, reflective theory suggested that art merely mirrors back what already exists, reflecting a positivistic world view. Somewhat later, intentionalist theory suggested that it was the message the author meant to convey that should shape the analysis of the work. Finally and most recently, constructionist theory focuses on the discursive aspects of the work in producing meaning and in controlling as well as responding to the beliefs that are dominant in society (i.e., a critical, postmodernist, or deconstructionist perspective). The argument in favor of cinemeducation depends upon uncritical acceptance of the ‘art as mimesis’ reflective theory and authorial intentionalist theory. Whilst Alexander and colleagues (2005) suggest that fiction film is a source of diagnostic ‘facts,’ for example, Morris (2010) focuses more on the film’s intention to create in the viewer certain effects, such as empathy and compassion. As Helsby (2005) points out, however, most recent media analysis within the field of representation theory recognizes that films both reflect and constitute social realities. Matters are thus much more complex than the proponents of cinemeducation suggest. A recent text on film theory (Lapsley and Westlake 2013), for example, traces the history of such theory through several paradigmatic stages, from early formalist, semiotic, and psychoanalytic approaches to the more recent postmodernist and deconstructionist standpoints, each of which would offer radically different readings of the same film. Table 1. Theoretical paradigms and the view of dementia in film Paradigm Positivist

Nature of film Mimetic; 1:1 view of reality

Dementia view Progressive brain disease

Aim Provide facts

Interpretivist

‘Life through a lens’; one of a number of ways of seeing things Reflects and constitutes hegemonic understandings

Multifactorial causation; social disability

Develop empathy and social support

Socially constructed

Deconstruct orthodox, taken-for-granted representations

Postmodernist/ Deconstructionist/Critical theory

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A recent article by Wearing (2013), Dementia and the Biopolitics of the Biopic: From Iris to the Iron Lady, serves well to contrast the positions taken by Alexander (2005) and Morris (2010) with a more deconstructionist approach. Here, Wearing develops an analysis of the gendered nature of the two films in question, both of which are biopics about well-known women who ended their lives with dementia. Commenting on what their deeper structures tell us about society’s views on women, aging, and power, Wearing notes that the role dementia plays in these films is “an indication of how the condition is imagined, understood and negotiated in the public sphere” (2013: 316). Wearing’s deconstructionist critique is explicitly about the cultural politics of representation. It thus instates an approach which aims to “reveal as much about the culture and context of production as about the person whose life is examined” (ibid.). Dementia is conceptualized here as a “narrative ploy” which enables particular messages about women, power and aging to be foregrounded (ibid.: 321). Deconstruction is not, however, fundamentally concerned with the authenticity of representations, or thus with their justice or injustice to particular social groups. Leading ladies? Aging, gender, and power relations in dementia movies We have touched earlier on the likelihood that interest in dementia within mainstream cinema will be motivated less by a desire to engage with social issues than by the potentially exciting things that can be done dramatically with the concept of memory loss. Greenberg notes that in its treatment of mental health issues, “mainstream cinema especially, if not always reliably, foregrounds amnesia, multiple personality disorder and other dissociative reactions because of their inherent melodramatic potential” (2003: 807 [emphasis added]). Baxendale (2004) argues that from the viewpoint of clinical neuropsychology, however, most mental health conditions in Hollywood films in fact bear little relation to reality. A report by Alzheimer Europe (2013) also highlights the inconsistencies of some filmic representations of memory in dementia more specifically. All three of the general release feature films related to dementia recommended by cinemeducators that are discussed above – Iris, The Notebook, and Away from Her – have also been subjected to critique as representations from various theoretical perspectives that are not taken into account by the proponents of cinemeducation (see, e.g., Segers 2007; Chivers 2011; Gravagne 2013; Zeilig 2013). If, for example, we adopt a gen-

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dered frame of reference for viewing these films, we find that each of them relates the story of the male spouse-carer of a female partner with dementia. This is already strikingly at odds with a social world in which the major proportion of care for people with dementia – both paid and unpaid – is provided by women. As Scheidt and colleagues (2013) have also pointed out, even when the focus is ostensibly on the person with dementia as the central subject, the dominant perspective is that of the caregiver. In each case, moreover, the representation relates centrally to the male partner’s loss, the burdens of caring for someone who is ‘disappearing,’ and the inexorable, progressive destruction of brain tissue. In all three films, there is also a noticeable homogeneity of ethnicity, social class, and living arrangements; the three couples are white, married, heterosexual, and middle class or upwardly mobile professionals. In both Iris and Away from her, the central characters have met at university.1 This is unrepresentative of real-world social diversity among people with dementia and corresponds closely with Ludwin’s definition of heteronormativity, that is, [the] privileging of the individualised nuclear family over all other family arrangements: specifically the privileging of a particular, narrow form of heterosexuality, based on the married, monogamous, heterosexual, reproductive, nuclear family, which relies on (context specific) gender roles. (2011: 107)

It is unlikely that these tendencies in mainstream film will change significantly, but in contexts of both dementia research and education, those who wish to promote social inclusion and awareness of equality and diversity among people with dementia can promote the development of critical skills in reading film. In the final section of this chapter, we consider an alternative use of film that aimed to reduce the epistemic injustice described by Fricker.

T OWARDS

EPISTEMIC JUSTICE In 2006, Andrea Capstick was involved in a film-making project which led to the development of the short, independent arthouse film Ex Memoria (Appignanesi 2006). Unusual at the time for its focus on the subjective experience of the central character with dementia, Ex Memoria was used

1

This trend continues, including the University setting, in the Oscar-winning feature film Still Alice (2014) which was released in Europe as this text was going to press.

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for teaching dementia studies students for several years. Whilst the film consistently promoted discussion of the central character’s troubled past and its impact on her present day experience of dementia (cf. Capstick 2007 for a full discussion), some commentators suggested that the performance of the actor in the central role was not entirely convincing as a person with dementia. In keeping with the findings of Gerritsen (2014), in this case, the urge to avoid caricature or undue negativity resulted in a portrayal which for the most part resembled, as one viewer noted, “mild depression, rather than dementia.” As Miles and Plate (2004) note in their critique of capitalist/industrialist cinema, films made in these alternative traditions are more likely to encourage identification with the other as a fellow human being than as an alien or victim of disease. In the attempt however, they can lose credibility for those who encounter dementia in their own family or workplace. Ex Memoria was also filmed in a working care home, in the presence of real men and women with dementia, raising ethical questions about the exclusion of their own voices. The frequently cited slogan of service user involvement ‘Nothing about us without us’ seemed to apply here, and has led us over the intervening years to carry out a body of work (Capstick 2011; Capstick 2012; Chatwin and Capstick 2012; Ludwin and Capstick [in press]) in which people with dementia themselves appear in films made for educational purposes. Bay Tree Voices is a participatory film-making project carried out in a voluntary sector day center in the Northern UK with ten people all of whom had moderate to severe dementia (see https://vimeo.com/35142428). The project was based on the principles of social inclusion and civic engagement which underpin both Participatory Video and Participatory Action Research (PAR) more generally. In PAR, the research process itself is change-oriented and the changes brought about are the result of collaborative social action between researchers and participants (McIntyre 2008). Unlike standard documentary, the film is co-produced with the participants and consists of a series of interactions, each just a few minutes long. The film was not scripted or rehearsed and, as a result, the interactions often have the character of ‘lucky finds,’ a term MacLure (2003: 173) uses to describe those momentary or unexpected events that can disrupt taken for granted ways of seeing. The film we made with Cath, for example, acts as a corrective to the kind of mind-body dualism which results in a view of dementia as a ‘death that leaves the body behind.’

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Fig. 1. Mind-body holism Cath lived on a smallholding with her daughter, where for many years they had raised goats and sold milk. We first see Cath involved in a photo-elicitation exercise discussing pictures of goats. We then accompany her back home at the end of the day where she introduces us to her own goats, Daisy and Nimble, taking evident pride in showing us around. In one particularly striking image, as we enter the stable where the goats live, Cath’s hand goes out automatically to switch on the light, an example of what has been described as ‘embodied (or procedural) memory.’ (Katz 2013)

We intentionally focused on people who were on the margins of the social life of the day center or with whom communication through usual channels presented some difficulties. As Chatwin (2013) has shown, micro-analysis of conversations with people with dementia is often the key to a new understanding of what they may be trying to communicate, and this was what we intended the film to demonstrate. A process of ‘consent by editing’ was used in which participants and their families saw the film before it was shown to anyone else and could indicate whether they wanted any changes or wished to have their image removed (cf. Capstick 2012). No changes were, in fact, requested, and the film is now used as the basis of a series of online discussions with students, relating, for example, to the often overlooked intersections between the lives of people with dementia and key events in social history (see Tom’s story, below) and cultural practices of which many students were previously unaware (such as the use of prayer beads in Islam; see Shahida’s story). Fig. 2. Reinstating the person with dementia as ‘knower’ Cyril spontaneously left a group game of Hangman taking place in the main lounge. We accompanied him on a walk along the corridor and into the reminiscence room. Cyril didn’t show much interest in most of the objects in the room, including an old vacuum cleaner and iron, but his response to the 1940s radio set was sudden and enthusiastic; he picked it up and began to examine the back of the casing: Cyril: The old radios, they used to work with a high tension battery and an accumulator, didn’t they? AC: (laughing) I’ll take your word for it… Do you know a lot about radios? Cyril: Well, when I started work, I saved up and bought my grandfather one, and it worked with a high tension battery and an accumulator…

The historical and technical expertise Cyril displays here indicates that, on this particular subject at least, he is epistemically privileged; the expert on his own experience (Katz 2000).

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Fig. 3. Recognizing citizenship When we asked Brian if he would show us round the day center he seemed surprised at first, but readily agreed to do so. He told us he had been a keen gardener, and he was not entirely happy with the condition of the day center garden which he said he would discuss with the manager (“It’s been neglected, which is a pity”). He describes a plant as “one little chap all on his own,” and explains that “from autumn through into winter we stop growing but they don’t.” Knowing about Brian’s former career as a transport policeman made sense of his tendency to become worried when the minibus delivering other people to the day center was late, and to wonder aloud about whether he should go and find them. Brian had also been closely involved in the Leeds Millennium Tapestry, images of which appear in the film with his voiceover commentary.

Here, Brian’s courtesy, concern for the wellbeing of others, and positive model of social citizenship contrast with the frequent portrayal of men with dementia as violent and aggressive in mainstream fiction films. His struggles to find the right word often resulted in a creative and philosophical turn of phrase. Fig. 4. Validating experience Tom, an 89-year old man with dementia recounts in detail his experiences on fuel supply in the RAF during World War II. He makes precise and accurate reference to Hamburg, Arnhem, and El Alamein. He recounts movingly his reunion with his wife-to-be at the end of the war and the continuing reciprocity of their relationship: “When I go home today Betty will be waiting for me. We’ve been good to each other, Betty and me.”

Tom is well able to tell his own story from memory. As with most people with dementia, his recall for emotionally-charged remote events remains good. Fig. 5. Learning from diversity Shahida is South Asian and Muslim; she generally speaks only a few words in her first language. In the film, we see her unexpectedly take hold of a string of plastic beads during a small group activity and count them off, reciting something under her breath. Students were given the task of finding out about the use of prayer beads in Islam. Anton, a Romanian former refugee, is seen carrying a plastic bin liner along the corridor, scattering its contents on the ground and moving plant pots in the garden. Although little was known about Anton’s past, students were able to deduce from this that he had probably been an agricultural worker. His determination to continue carrying out a work role that was meaningful to him was very striking.

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The contributors to Bay Tree Voices emerge as knowledgeable and often creative commentators. They also display significantly more social diversity in terms of their ethnicity, social class, economic status, and living arrangements than characters in the fictional sources discussed. It is interesting to note that of the ten people who took part in Bay Tree Voices, only one belonged to a male caregiver-female care recipient dyad. Of the remainder, four were men living with female spouses and five were women whose daughter or daughter-in-law was the main caregiver. In her conclusion to Epistemic Injustice: Power and the Ethics of Knowing, Fricker writes In exploring epistemic injustice as an ethical phenomenon [...] this book also points to the possibility of a different sort of treatment, one more directly concerned with institutional conduct, and so placed more squarely in the political frame. (2007: 177)

As we were at pains to point out in the introduction to this chapter, the intention of this section has not been to contrast ‘bad’ films with ‘good’ ones, and nor is it to present a view of dementia that is more ‘truthful’ because based on real life encounters rather than fiction. Instead, it is to begin the work of actively ‘doing justice’ to people who have dementia through what Fricker describes as “epistemic affirmative action” (ibid.: 170).

C ONCLUSIONS : S OCIAL PARTICIPATION

AND EPISTEMIC JUSTICE This chapter has argued that culturally-mediated epistemic injustice is a significant factor in the stigma which attaches to a dementia diagnosis. Fiction film is a popular vehicle for the perpetuation of negative and stereotypical views of people with dementia and one of the most influential ways in which fear and avoidance are reproduced. We hope to have demonstrated why such films, bringing with them the whole freight of the symbolic and representational order within which they are produced, cannot be used uncritically to raise awareness about dementia. We suggest that where mainstream feature films are used for educational purposes, this should be done in such a way that the view of people with dementia within them is problematized. Cinemeducation should make the process of learning more complex, rather than merely easier or more entertaining; it should ‘read against the grain’ (Jameson 1981) of mainstream representations. A precondition for the epistemic injustice Fricker discusses is that those who experience it “participate unequally in the practices through which

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social meanings are generated” (2007: 6). We hope that the alternative body of data from Bay Tree Voices presented here has demonstrated that people with dementia are able to participate for themselves in the production of resources to be used for educational and consciousness-raising purposes. By foregrounding the diversity of people with dementia and their retained knowledge and skills, we hope also to have indicated how it is possible to open up a different filmic discourse about dementia, one which is concerned with social justice and inclusion. Our own films are also representations. Bay Tree Voices is the edited end product of many hours’ footage, and all film is inevitably reductive. If we show the participants ‘in a good light,’ however, that is because it was part of the film’s conscious intention to counter negative views and model successful communication. By amplifying real voices, we begin to counter the misleading tropes of global amnesia, irrational violence, and devastating erosion of identity which remain common in mainstream film.

R EFERENCES Alexander, Matthew/Lenahan, Patricia/Pavlov, Anna (2005): Cinemeducation: A Comprehensive Guide to Using Film in Medical Education, Oxford: Radcliffe Publishing. Alzheimer Europe (2013): The Ethical Issues Linked to the Perceptions and Portrayal of Dementia and People with Dementia, Luxembourg: Alzheimer Europe. Appignanesi, Josh (2006): Ex Memoria, London: Missing in Action Films. Baldwin, Clive (2008): “Narrative, Citizenship and Dementia: The Personal and the Political.” In: Journal of Aging Studies 22, pp. 222-228. Basting, Anne (2009): Forget Memory: Creating Better Lives for People with Dementia, Baltimore: Johns Hopkins University Press. Baxendale, Sallie (2004): “Memories Aren’t Made of This: Amnesia at the Movies.” In: British Medical Journal 329, pp. 1480-1483. Behuniak, Susan (2011): “The Living Dead: Constructing Alzheimer’s Patients as Zombies in the Euthanasia Debate.” In: Ageing and Society 31/1, pp. 70-92. Brown, Mark/Clegg, David (eds.) (2007): Ancient Mysteries, London: Trebus Publishing.

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Capstick, Andrea (2007): “It’s as though Her Feelings Get Inside Your Head: Caregiver and Practitioner Responses to Ex Memoria, a Short Film about the Experience of Dementia.” Dementia 6/3, pp. 288-295. --- (2011): “Travels with a Flipcam: Bringing the Community to People with Dementia in a Day Care Setting Through Visual Technology.” In: Visual Studies 26/2, pp. 142-147. --- (2012): “Participatory Video and Situated Ethics: Avoiding Disablism.” In: Elisabeth-Jane Milne/Claudia Mitchell/Naydene de Lange (eds.), A Handbook of Participatory Video, New York: Alta Mira, pp. 269-282. --- /Chatwin, John (2012): Bay Tree Voices (dvd), Bradford: University of Bradford. --- /Clegg, David (2013): “Behind the Stiff Upper Lip: War Narratives of Older Men with Dementia.” In: Journal of War and Culture Studies 6/3, pp. 239-254. Cassavetes, Nick (2004): The Notebook, US: Avery Pix. Cassey, Jo (2005): “Mental Illness.” In: Wendy Helsby (ed.), Understanding Representation, London: British Film Institute, pp.99-114. Chatwin, John (2014): “Conversation Analysis as a Method for Investigating Interaction in Care Home Environments.” In: Dementia 13/6, pp. 737-746. Chatwin, John/Watt, Ian/Collins, Sarah/Field, Rowena (2007): “A Feeling of Equality: Some Interactional Features that Build Rapport and Mutuality in a Clinical Encounter.” In: Sarah Collins (ed.), Healthcare Communication and Participation in Action, Maidenhead: Open University Press, pp. 109-115. Chivers, Sally (2011): The Silvering Screen, Toronto: University of Toronto Press. Cuddy, Lola L./Duffin, Jacalyn (2005): “Music, Memory and Alzheimer’s Disease: Is Music Recognition Spared in Dementia and How Can It Be Assessed?” In: Medical Hypotheses 64/2, pp. 229-235. Downey, Eleanor P./Jackson, Robert L./Puig, Maria E./Furman, Rich (2003): “Perceptions of Efficacy in the Use of Contemporary Film in Social Work Education: An Exploratory Study.” In: Social Work Education 22/4, pp. 401-410. Eyre, Richard (2001): Iris, UK: Miramax Films, BBC Films, and Intermedia Films.

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Foucault, Michel (1982): The Hermeneutics of the Subject, Paris: Collège de France Lecture Series. Freud, Sigmund (1888): “Hysteria.” In: James Strachey (ed.), The Standard Edition of the Complete Psychological Works of Sigmund Freud, London: Hogarth Press, pp. 37-62. Fricker, Miranda (2007): Epistemic Injustice: Power and the Ethics of Knowing, Oxford: Oxford University Press. --- (2008): “Forum on Epistemic Injustice: Power and the Ethics of Knowing.” In: Theoria 61, pp. 69-71. Gerritsen, Debbie L./Kuin, Yolande/Nijboer, Jessika (2014): “Dementia in the Movies: The Clinical Picture.” In: Ageing and Mental Health 18/3, pp. 586-587. George, Daniel R. (2010): “Overcoming the Social Death of Dementia through Language.” In: Lancet 376//9741, pp. 586-587. Gravagne, Pamela H. (2013): The Becoming of Age: Cinematic Visions of Mind, Body and Identity in Later Life. Jefferson: McFarland and Company. Greenberg, Harvey R. (2003): “Multimedia Reviews: La-la Land Meets DSM-IV: The Pleasures and Pitfalls of Celluloid Diagnosis.” In: Psychiatric Services 54, pp. 807-808. Helsby, Wendy (ed.) (2005): Understanding Representation, London: British Film Institute. Hulko, Wendy (2009): “From ‘Not a Big Deal’ to ‘Hellish’: Experiences of Older People with Dementia.” In: Journal of Aging Studies 23/9, pp. 131-144. Jackson, Stevi (2006): “Gender, Sexuality and Heterosexuality: The Complexity (and Limits) of Heteronormativity.” In: Feminist Theory 7/1, pp. 105-121. Jameson, Fredric (1981): The Political Unconscious: Narrative as a Socially Symbolic Act, New York: Cornell University Press. Johnstone, Megan-Jane (2013): “Metaphors, Stigma and the ‘Alzheimerization’ of the Euthanasia Debate.” In: Dementia 12/1, pp. 377-393. Katz, Arlene M. (2000): “A Council of Elders: Creating a Multi-Voiced Dialogue in a Community of Care.” In: Social Science and Medicine 50, pp. 851-860.

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Katz, Stephen (2013): “Dementia, Personhood and Embodiment: What Can We Learn from the Medieval History of Memory?” In: Dementia, 12/3, pp. 303-14 Kitwood, Tom (1997): Dementia Reconsidered: The Person Comes First, Buckingham: Open University Press. Lapsley, Robert/Westlake, Michael (2013 [1988]): Film Theory: An Introduction, Manchester: Manchester Metropolitan University Press. Lebeau, Vicky (2001): Psychoanalysis and Cinema: The Play of Shadows, London: Wallflower. Leyhe, Thomas/Müller, Stephan/Millian, Monika/Eschweiler, Gerhard W./ Saur, Ralf (2009): “Impairment of Episodic and Semantic Autobiographical Memory in Patients with Mild Cognitive Impairment and Early Alzheimer’s Disease.” In: Neuropsychologia 47/12, pp. 2464-2469. Logan, Caroline (2011): “La Femme Fatale: The Female Psychopath in Fiction and Clinical Practice.” In: Mental Health Review Journal 16/3, pp. 118-127. Ludwin, Katherine (2011, unpublished PhD thesis): Negotiating Normative Heterosexuality: A Biographical-Narrative Study in the New Town of Milton Keynes, London: Birkbeck College. --- /Capstick, Andrea (unpublished paper): “Encountering the Person in ‘Person with Dementia’: Participatory Video Work with Henry and Florence.” --- (2015): “Using Participatory Video to Understand Diversity Among People with Dementia in Long-Term Care.” In: Journal of Psychological Issues in Organisational Culture 5/4, pp. 30-38. MacLure, Maggie (2003): Discourse in Educational and Social Research, Buckingham: Open University Press. Maxwell, Joseph A. (2012): A Realist Approach for Qualitative Research, London: Sage. Metz, Christian (1982): Psychoanalysis and Cinema: The Imaginary Signifier, London: Macmillan. Miles, Margaret R./Plate, Brent S. (2004): “Hospitable Vision: Some Notes on the Ethics of Seeing Film.” In: Cross Currents 54/21, pp. 22-31. Milne, Elisabeth-Jane/Mitchell, Claudia/De Lange, Naydene (eds.) (2012): A Handbook of Participatory Video, New York: Alta Mira. Monaco, James (2000 [1977]): How to Read a Film: Movies, Media, Multimedia, Oxford: Oxford University Press.

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Morris, Gary (2010): “Cinematic Health and Social Care: Developing Empathy and Connecting with the Screen Experience.” In: Tony Warne/ Sue McAndrew (eds.), Creative Approaches to Health and Social Care Education, Basingstoke: Palgrave Macmillan, pp. 146-156. Pitt, Brice (1982): Psychogeriatrics: An Introduction to Psychiatry of Old Age, London: Churchill Livingstone. Polley, Sarah (2006): Away from Her, Canada: Film Farm. Ricoeur, Paul (1970): Freud and Philosophy, New Haven: Yale University Press. Scheidt, Rick J./Vanden Bosch, Jim/Kivnick, Helen Q. (2013): “Alzheimer’s at the Movies: A Look at How Dementia is Portrayed in Film and Video: Dementia on the Silver Screen.” In: Gerontologist 53/1, pp. 172-173. Smith, Sue/Molineux, Matthew/Rowe, Nick/Larkinson, Louise (2006): “Integrating Medical Humanities into Physiotherapy and Occupational Therapy Education.” In: International Journal of Therapy and Rehabilitation 13/9, pp. 421-427. Swinnen, Aagje (2012): “‘Everyone is Romeo and Juliet!’ Staging Dementia in Wellkåmm to Verona by Suzanne Osten.” In: Journal of Aging Studies 26, pp. 309-318. Vine, Richard (2012): “Peter Mullan: ‘Richie is a Maniac in Charge of an Empire’.” In: Telegraph, December 3. Wearing, Sadie (2013): “Dementia and the Biopolitics of the Biopic: From Iris to the Iron Lady.” In: Dementia 12/3, pp. 315-325. Zeilig, Hannah (2013): “Dementia as a Cultural Metaphor.” In: Gerontologist 54/2, pp. 258-267.

Intercorporeal relations and ethical perception Portrayals of Alzheimer’s disease in Away from Her and En sång för Martin L ISA F OLKMARSON K ÄLL

Recent years have seen an increase of cinematic portrayals of degenerative dementia, as well as an increasing popular and scholarly interest in such portrayals. While this upswing in the production of films about dementia, and particularly Alzheimer’s disease, contributes to the visibility of the condition, there is a critical consensus that most cinematic portrayals of dementia tend to reproduce overly negative stereotypes, reinforcing a monsterized view of dementia as leading to a loss of self and a living death of the mind before actual physical death (Basting 2009; Cohen-Shalev and Marcus 2012; Swinnen 2013). Mainstream films about dementia are furthermore often criticized for focusing more on the suffering of relatives and caregivers than on the person actually afflicted with dementia (CohenShalev 2012). In the following, I turn to the two films Away from Her (Polley 2006) and En sång för Martin (A Song for Martin, August 2001) which both portray a character with Alzheimer’s disease and the effects of the condition on her or his relations with the world and others, as well as on those others. While these films certainly could be said to focus on the perspective and suffering of the people surrounding the person with dementia, I suggest that they could also be read, and more productively so, as focusing on rela-

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tions between persons with dementia and their loved ones, and as bringing out relationality as essential to and constitutive of subjectivity. With my reading, I aim to demonstrate how both films offer a portrayal of bodily relationality as foundational for subjectivity and of embodied existence as a continuous process of coming into being in relation with others. Such a reading is in my contention of great significance insofar as it recognizes persons with dementia, as well as related others, as inherently social beings, situated in a world of shared meanings. It thereby not only puts focus on how conditions of dementia come to affect relations, but also forms a better point of departure for approaching the complex alterations of selfhood that occur in the development of dementia by locating these alterations not in an individual brain or mind conceived in atomistic terms, but instead seeing them as embodied and embedded within a whole situation. As Hughes, Louw, and Sabat put it, “people with dementia have to be understood in terms of relationships, not because this is all that is left to them, but because this is characteristic of all of our lives” (2006: 5). The relationality and constitutive corporeal connectedness foundational for subjectivity furthermore opens a path toward explorative interrogation of ethical perception, relations, and decision-making (cf. Käll 2012, 2014). In my engagement with the films, I draw on Maurice Merleau-Ponty’s writings on lived embodiment in terms of intercorporeality (1964, 1968), a term indicating a constitutive corporeal connectedness between embodied subjects. In doing so, I join a growing area of work in dementia research focusing on embodiment and relationality as central to understanding the subjectivity of dementia.1 As for instance Pia Kontos (2004, 2005, 2014) and Eric Matthews (2006) have shown, Merleau-Ponty’s phenomenology of the lived body offers rich resources for approaching alterations of selfhood and self-experience due to the onset of conditions of dementia, and, as discussed by Kristin Zeiler (2014), the notion of intercorporeality is useful for thinking through the notion of personhood as it pertains to cases of dementia. I add to this already existing work on embodiment and intercor1

The field of research focusing on personhood and subjectivity in relation to dementia is by now both extensive and diverse, including both empirical and theoretical work from several disciplinary perspectives (cf. Herskovits 1995; Hughes, Louw, and Sabat 2006; Hughes 2011; Hydén, Lindemann, and Brockmeier 2014; Kitwood 1997; Kitwood in Baldwin and Capstick 2007; Kontos 2004, 2005; Sabat 2001a, 2001b; Sabat and Harré 1992; Zeiler 2014; Örulv 2008).

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poreality in relation to dementia by focusing specifically on cinematic representations and by stressing the formative force of intercorporeality in the constitution of individual embodied subjectivity. In addition, I hope to contribute to the interpretive approach Robert Sinnerbrink refers to as “film-philosophy,” a philosophical approach to film that “puts philosophy in dialogue with film as an alternative way of thinking” (2011: 7) and offers a way of disclosing as well as transforming our experience of the modern world. The films, in my contention, lay bare existential and ethical dilemmas introduced by Alzheimer’s disease which demonstrate the insufficiency of fixed frameworks and precise principles for action and which prompt reflection on habituated perceptual norms and ways of approaching the world.

ALTERATIONS

OF SUBJECTIVITY AND RELATIONS Away from Her and En sång för Martin present us with forceful encounters with the ambiguities and conditions of life as these are made urgently present with the onset and development of Alzheimer’s disease. Away from Her tells the story of Fiona Anderson (Julie Christie) and Grant Anderson (Gordon Pinsent), a couple married for 44 years (since she was 18, we learn) confronting Fiona’s progressing Alzheimer’s disease. While Grant resists the diagnosis, expressing disbelief and attempting to understand Fiona’s memory lapses as part of her eccentric personality, or even as punishment for his past infidelity to her, Fiona appears more accepting and as she feels she “may be beginning to disappear,” she counsels Grant that all they should aspire to “is a little bit of grace.” As her lapses of memory become more serious than the forgetting of words or of what goes in which kitchen cabinet, Fiona makes the decision to move in to the assisted-living facility Meadowlake. Grant reluctantly lets her go and agrees to the facility’s 30-day no-visitation policy, only to discover that after a month apart, Fiona shows no signs of recognizing who he is or remembering their life together. She comes to recognize him from one day to the next during his frequent visits but she treats him with careful distance and formal courtesy. During her time at Meadowlake, she has developed an attachment to a fellow resident, Aubrey (Michael Murphy), who is there temporarily to give his wife some respite. Grant watches in silent torment first Fiona’s affection toward Aubrey, eventually realizing that they are in love, and then, as Aubrey leaves Meadowlake, her rapid decline into depression and further

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confusion. In order to preserve Fiona’s happiness and slow down the progression of her condition, Grant seeks out Aubrey’s wife Marian (Olympia Dukakis) to convince her to let Aubrey return to Meadowlake, something to which Marian finally agrees after she and Grant have ended up in bed together.2 At the very end of the film, when Grant is about to present Fiona with a surprise visit by Aubrey, she unexpectedly seems to recognize and remember Grant as her husband once again, after more than a year of not showing any such signs at all. Portraying a different love story, En sång för Martin follows the composer Martin Fischer (Sven Wollter) and the violinist Barbara Hartman (Viveka Seldahl) who meet when he guest conducts the orchestra in which she plays first violin. They fall passionately in love, divorce their respective spouses and get married, starting a life together initially characterized by mutual admiration and partnership in their shared passion for music. Only a short time into their marriage, Martin starts exhibiting lapses of memory that quickly get more serious. After Martin suddenly becomes disoriented when conducting a public performance and is unable to continue, he is diagnosed with early-onset Alzheimer’s. Encouraged to go about life as normally as possible, Martin and Barbara are seen continuing their work with Martin’s project of composing an opera. The aim of finishing this project ultimately has to be abandoned due to the worsening of Martin’s condition which seems to situate him in a reiterated present where he composes the same passages over and over again, with no indication of finalizing the work. The film depicts Martin’s increasing confusion and dependence on Barbara, as well as her exhaustion and frustration, resulting in expressions of verbal abuse. At one point, Barbara, completely exhausted, loses her temper when giving Martin a shower. Reaching what Sally Chivers sees as “one of her most vicious moments,” Barbara lashes out at him: That’s why I’ve given up my job. So I can stay here and look after you night and day. See? I’m washing off your shit. I hate doing it, but I do it all the same because

2

According to Sally Chivers, the portrayal of Grant’s attempt to convince Marian to move her husband Aubrey back to Meadowlake “allows the film to offer up Grant as the sacrificial spouse willing to endure any fantasy that provides care to his ailing wife and, eventually, to cheat again in order to try to get Fiona what she needs” (Chivers 2011: 90). Such a reading of Grant’s action is in my contention both rather one-dimensional and somewhat cynical as it does not seem to recognize the complexities of relations and changing conditions of life.

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you’re a poor helpless soul who’s dependent on me. Do you realize that? (qtd. in Chivers 2011: 68)

As Martin’s condition degenerates further, he finally, after a long struggle, becomes unmanageable for Barbara and has to be moved into an institutional care facility. While there are many parallels between Away from Her and En sång för Martin, the two films are at the same time very different in terms of the portrayal of the person with Alzheimer’s disease, the burden of the illness on the person afflicted as well as on spouses and other relatives, and the way the narrative is structured. Anne Basting observes that instead of focusing on tragic decline, Away from Her eschews “the linear plot line that seeks climax and resolution” (2009: 48). In contrast, En sång för Martin gives a sense of fatality not present in Away from Her and is composed as an unbroken linear chronology without digressions into the past. In many ways, En sång för Martin represents a typical structure of films about dementia, conveying a sense of nostalgia for an idealized past and telling a quite predictable story of the progression of Alzheimer’s disease as inevitably leading to a severe loss of mental as well as bodily capacities, memories, and recognition of oneself, one’s surroundings, and close relations. Away from Her in part conveys a sense of nostalgia for the past, too, but this sense is troubled when Fiona reveals Grant’s past indiscretions as well as her knowledge and memory of these, thereby rejecting any attempts of idealizing the past. The troubling of the past as an idealized background that is gone forever and in distinct ways separate from the present also avoids making the present stand out as an unchanging nightmare with no escape. Instead, past and present are portrayed as interrelated with one another and Fiona is seen as being in some continuity with her own past in spite of the cognitive decline that seems to have erased her memory of Grant as her husband. One striking difference between Fiona in Away from Her and Martin in En sång för Martin is the way in which they each are granted subject positions and are portrayed as expressing agency. At first sight, Fiona, to a higher degree than Martin, appears in a subject position and with a great deal of agency in spite of her condition of Alzheimer’s disease, a condition that often serves to legitimate denial of agentic and autonomous subjectivi-

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ty.3 Fiona is the one who initiates her move to Meadowlake, and she does so before her condition worsens to a point where she might no longer be able to make this decision by herself. At Meadowlake, she finds a new active role in her relation with Aubrey, assisting him in his card game, taking him for walks in his wheelchair, and helping with his rehabilitation. She also, at first very actively, chooses to be with Aubrey and gracefully holds Grant’s persistent attention at a distance. Further, Grant, in turn, lets her be an independent subject, and as he experiences her drifting away from him and not giving him the attention he seeks, he, with the exception of one time, nevertheless lets her be and watches her in silence, making sure she is well. In a way, he accepts the changes in how Fiona goes about her life and relates to her surroundings after having moved in to Meadowlake, and he changes his own way of being so as to still be able to relate to her as a subject making her own choices of who and how to be. In contrast to the portrayal of Fiona, Martin in En sång för Martin is portrayed as losing more and more of his agency and is treated less and less as an autonomous subject as his illness progresses. At the same time, though, Martin is portrayed as being remarkably active until the very end of the film, depicting the late stage of his condition. However, he does not act in ways that conform to the social expectations he used to fulfill and this might lead to seeing him as having lost agency. Chivers draws attention to this portrayal, arguing that the film depicts Martin as “disappearing as himself” for others “who expect a certain performance from him” (2011: 69). His failure of making progress in working on his opera, instead rewriting the same passages over and over again, does not seem to bother Martin himself or appear to him as failure. He is actively composing, and it is only in light of a need to move forward, composing new passages and finally completing a finished opera, that his active work appears as a failure. What concerns Martin is the work itself, which in itself carries its potential completion. While the potential completion is of significant importance for Martin, whether or not the work will in fact be finished is beside the point for him in his active involvement in the work of composing music. Martin 3

Fiona’s display of a sense of agency is all the more remarkable as it is found in the intersecting categories of gender, age, and ability. Chivers identifies “an unparalleled sense of female agency” (2011: 88) in Away from Her, but what is striking is that this agency is not only that of a woman but also of an older (albeit not old) woman diagnosed with and institutionalized for a degenerative cognitive disability.

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also actively expresses frustration with his condition and anger with Barbara for constantly watching over him, correcting him and telling him what he should and should not do, by telling her off and eventually breaking her violin. Instead of explaining his outbursts of anger as symptoms of Alzheimer’s disease, a more productive interpretation would be to see these outbursts as expressions of Martin as a person, experiencing and actively facing the conditions of his situation. Such an interpretation would recognize Martin as an active subject rather than a passive victim of the disease and would also be consistent with the portrayal, throughout the film, of Martin as a strong-minded person with an iron will, as Barbara puts it to her daughter at one point, valuing his independence and agency. 4 There are also some important differences between the external conditions in which Fiona and Martin and their respective spouses are situated, and in how these conditions form different possibilities not only for expressing individual agency and dealing with the progression of Alzheimer’s disease but also for maintaining and re-creating relations. In Away from Her, Fiona takes the initiative herself to move in to a care facility and thereby relieve Grant of having to take care of her. Martin, in En sång för Martin, on the other hand, remains at home until his confusion, disorientation and outbursts of anger increase to the point where Barbara is no longer able to take care of him. Grant’s role in Away from Her is never transformed to that of sole caretaker and Fiona is never seen as a passive victim of Alzheimer’s disease or as an unbearable burden for Grant. In contrast, Barbara in En sång för Martin eventually becomes nothing other than Martin’s caretaker and he becomes a burden for her that she finally cannot bear.

4

Athena McLean discusses how a culture of conceptualizing Alzheimer’s disease and other conditions of dementia in terms of loss of selfhood makes it rather easy for caregivers and others to disregard the agency of persons with dementia “under the assumption that the actual person is gone and that it is the disease that is meaninglessly acting” (2007: 3). The way in which an individual afflicted with dementia may be reduced to the label of a stigmatizing disease and thereby depersonalized and invalidated through the often unintentionally harmful behavior of healthy others is captured by Tom Kitwood’s notion of “malignant social psychology” (1997: 14). Such malignant social psychology is made manifest when the primary focus for others’ interaction with a person suffering from Alzheimer’s is the disease rather than the person, something that risks leading to the obliteration of personal characteristics and the silencing transformation of selfexpression into symptoms of cognitive decline.

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T HE

FORMATIVE FORCE OF INTERCORPOREALITY In spite of the differences of how Away from Her and En sång för Martin portray conditions of Alzheimer’s disease, they both demonstrate how it is something that affects relations between the person with the condition and her or his family and friends and how these relations are constitutive of the related individuals as embodied and embedded in the world. While both films have been characterized as being “more preoccupied with the selfhood of the figures surrounding the character with dementia, rather than on those suffering from it” (Cohen-Shalev and Marcus 2012: 74), I want to draw attention to how they, in different ways, focus on how selfhood and expressions of agency are thoroughly relational. Both films do indeed take the perspective of the spouses of the characters with Alzheimer’s disease, but this does not necessarily entail a privileging of their selfhood over the selfhood of those afflicted with Alzheimer’s. Instead of staging an oppositional framework which requires making a choice between the selfhood of one or the other in a relation of two I suggest a shift of focus from the idea of individuals as atomistic entities only externally related to one another to the idea that they are intertwined with and continuously become who they are in relation to one another. Reading the two films from such a perspective of mutual becoming opens up for the possibility of rethinking the loss of self commonly associated with Alzheimer’s disease in more complex terms than as an emptying out of an original whole. In addressing the relational aspect of embodied selfhood, I will here turn to Merleau-Ponty’s writings on the lived body and embodied subject as essentially intercorporeal. The notion of intercorporeality, found in Merleau-Ponty’s later writings (1964; 1968), deepens the phenomenological notion of the lived body intended to capture the body as it is subjectively lived by drawing attention to its situatedness in a social, cultural, historical, and material world. I will focus here on the formative force of intercorporeality, shifting focus from individual bodies to the constitutive relations between them. By bringing out a corporeal interconnectedness as the very ground for how bodies are formed as individual bodies, intercorporeality challenges ideas of the body as a self-enclosed discrete entity with distinct boundaries and instead recognizes boundaries as continuously shifting. From a philosophical perspective of intercorporeality, bodies are not, as Ann Cahill writes, conceptualized “as atomistic entities, with clearly marked borders” (2011: 148) but rather as coming into being simultaneous-

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ly with one another as boundaries between them are established, reinforced, challenged, and continuously altered. This is something we might well recognize in everyday experience of being embodied: Posture, comportment, and gesture constantly change in relation to different people, objects, and situations and come to be more or less stable as they are habituated in different ways. Intercorporeality is thus a formative and dynamic structure, and the foundational relation between embodied selves is an ongoing process of becoming who one is through alteration. Specific encounters and interaction between self and other take place against the background of their foundational intercorporeal connectedness and, writes Merleau-Ponty, imply “a transformation of myself and the other as well” (1973: 142). To recognize another person precisely as other, as another self who is not myself, and not simply as an extension or enlargement of one’s own being, involves being open to becoming other to oneself through such transformation. It is in the other’s expressions and the manner in which she deals with the world that her subjectivity is made present and that I discover “a miraculous prolongation of my own intentions, a familiar way of dealing with the world” (Merleau-Ponty 1962: 354) and that I come to “live in the facial expressions of the other” (1964: 146) as I experience the other living in mine. Here it is important to stress that this ‘miraculous prolongation of my own intentions’ and ‘familiar way of dealing with the world’ that I recognize in the other only stand out against the background of her alterity and the perplexity, wonder, and surprise it evokes. Her alterity, in turn, is made present as escaping grasp within the fabric of the familiar, as a style of weaving it in new, perhaps unexpected, and yet recognizable patterns. The other, writes Merleau-Ponty, “engages with the things in my world in a style that is at first mysterious to me but which […] responds to certain possibilities which fringed the things in my world” (1973: 142). To be extended out into the world and intentionally directed toward other people is to be open to disorientation and perplexity and to allow oneself “to be pulled down and rebuilt again by the other” (ibid.: 20) who in turn is pulled down and rebuilt again by me. The other draws me toward herself and I am thus drawn out of myself and back again. In equal measure, I draw the other out of herself and toward me. We are each exposed and vulnerable to one another and we solicit the awareness and attention of the other, nurturing our own selves and sense of who we are.

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By portraying a formative bodily relationality as foundational for subjectivity, the two films Away from Her and En sång för Martin, I argue, draw attention to the intercorporeality of bodily existence as a weave of impressing and being impressed upon, of offering, receiving, resisting, and coming into being. The focus on relationality, and particularly the relationality between the person with Alzheimer’s disease and her or his spouse, is underlined by the framing of both illness narratives as taking place within and as part of strong love stories. Sean Axmaker describes Away from Her as being “less a drama about Alzheimer’s disease than a cinematic poem of love and loss” (2007) and, with reference to Axmaker, Anne Basting contends that “Alzheimer’s is more a complicating factor in the story of Fiona and Grant’s lifelong relationship than a story in and of itself” (2009: 49; cf. Onstad 2007; Scott 2007). En sång för Martin is more than a narrative of dementia, as well, and the passionate love story between Martin and Barbara forms a powerful and ever-present background against which the Alzheimer narrative takes shape. Acknowledging that both films are more than only films about Alzheimer’s disease in no way downplays their character as illness narratives. Quite to the contrary, placing the illness narrative in the midst of and interrelated with other narratives, such as that of life altering love, marriage, and companionship and that of a passionate and active professional life, contributes to a more comprehensive understanding of illness precisely as situated in the midst of life, forming and being formed by all aspects of existence. In Away from Her, the relation between Fiona and Grant is radically changed by her complete oblivion of him as her husband, but it would be far too easy to say that it is entirely gone. Instead, Grant’s respectful persistence and Fiona’s careful openness allow them to form a new relation where he visits her for talks and to read to her. This relation is both for Grant and Fiona in important respects a continuation and new configuration of the relation they had prior to the onset of Fiona’s condition. Grant, who still remembers the past, has the ability to deliberately continue certain habituated ways of being and interacting with Fiona, such as reading to her, something he does both before and after Fiona moves in to Meadowlake. While her condition of Alzheimer’s disease and her loss of conscious memories of Grant and their lives together force a rehabituation of this habituated interaction, for instance in their bodily comportment to one another, it nevertheless continues to form their becoming in relation to each

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other. There is a bond between each of their ways of being-in-the-world, and through this bond they are each formed in relation to one another, finding a new familiarity sitting next to each other talking, reading, and listening. Even though Fiona does not know who Grant is in the sense of actively remembering their past and his identity as her husband, she does relate to him immediately with some expression of familiarity when they first meet after a month apart. When Grant comes to find her with Aubrey, she immediately gets up and talks with him for a short while before returning to Aubrey. While not recognizing Grant as a person she knows in a specific capacity in her life and past, Fiona does recognize him as a person who is part of her immediate surrounding simply by being there, a person with whom she can easily strike up a conversation. Their new-formed interaction involves a transformation of both Grant and Fiona, albeit under very different conditions. But it is a transformation that happens against the background of a foundational intercorporeal connectedness that makes possible their meeting each other as individuals, becoming who they are in their meeting, each letting the other draw them out of themselves and back again, allowing themselves to be pulled down and rebuilt again. Understating this basic recognition and intercorporeal connectedness and instead focusing only on the lack of recognition of a specific identity, something that is perhaps easily done, would in my contention be a mistake. Grant is quite understandably at first both shocked and distraught by Fiona’s lack of memory and recognition. However, if, instead of focusing on this aspect of their meeting, regardless of how overshadowing it is, we draw attention to the ways in which she does recognize him, namely as another person in whom she finds “a miraculous prolongation of [her] own intentions, a familiar way of dealing with the world” (Merleau-Ponty 1962: 354), we are in a much better position to see not only that there is indeed a common ground founding their interaction, but also that Fiona is portrayed as being an agentic and self-expressive subject rather than simply a victim of Alzheimer’s disease. The interaction between Fiona and Grant in Away from Her and their way of rehabituating how they are with one another, forming a new, albeit profoundly different and in many respects more distant relation, contribute to holding both of them in personhood, to speak with Nelson and Scholz (2003), throughout the progression of the disease. Even though Away from Her has its share of loss (Basting 2009: 48), the film does not depict Fio-

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na’s oblivion of the specific identity of Grant as her husband and of their past together as a hindrance for interaction between them, but in fact as allowing them to form a new relation on the basis of an immediate corporeal connectedness and common being-in-the-world. They remain individual subjects formed by the new relation between them. In contrast, En sång för Martin portrays how an affliction of Alzheimer’s disease can severely threaten the personhood of both the person suffering from Alzheimer’s and the immediate family member acting as caregiver. As Martin’s condition worsens, he and Barbara become bound to each other in a completely different way than before and their relation is reductively transformed into one of caretaker and caregiver. Instead of holding each other in personhood, the personhood of both risks destruction. Barbara is unable to let Martin be an independent subject and to hold him in personhood since she, following the advice given by the doctor, attempts to uphold their normal ways of being and interacting in a situation that radically breaks with and reconfigures the boundaries of normalcy. En sång för Martin portrays an almost obsessive need, for both Martin and Barbara, to recollect and hold on to fixed identities and memories of the past. Throughout the film, Barbara reminds Martin of his identity as a composer and as her husband, as well as of her identity as his wife, and Martin does the same. While these constant reminders appear to be intended as ways to preserve both the identity of Martin and Barbara, as well as the relation between the two of them, they instead give the impression of doing the exact opposite by freezing and fixing their identities to those of an idealized past and not allowing for any reconfiguration of subjectivity in new directions. The idealized past takes the form of a fixed measure for normalcy and the unexpected events of the present are thereby turned into aberrations from a projected life course rather than seen as one possible path of life. The present is frozen in light of the idealized past and future possibilities are closed down. En sång för Martin also captures well how the duration of time contributes to the mutual formation, habituation, and reification of embodied subjects in close relations. It brings out the complexities, asymmetries, and often conflicting elements that coexist and are continuously reiterated within such relations. The film depicts how Barbara’s day-to-day living with Martin as his condition of Alzheimer’s disease progresses involves conflicting feelings and emotions that contribute to the ways in which individual

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embodied subjects come into being. It is not difficult to imagine the worry and sense of helplessness, the tiresomeness of constant consideration, the resentment, shame, guilt, anger, and sadness, as well as deep love and compassion, all coming together in the formation of lived bodies that do not connect in any seamless fashion. On Chivers’ (2011: 66) account, En sång för Martin alleviates Barbara from her responsibility for Martin and thereby frees her to return to a life without the burden of Alzheimer’s disease. “By acknowledging Martin as lost,” she writes, “never again having the potential for a ‘normal’ working or romantic life, Barbara frees herself to pursue normalcy, returning to ‘act like a normal person’ in regaining her career” (ibid.: 68). Chivers even goes so far as to say that “Barbara revels in her regained freedom” (ibid.: 66). Such an interpretation, however, neglects the great amount of guilt and sadness Barbara expresses when she finally realizes she can no longer care for her husband and he is institutionalized. She resists Martin’s hospitalization until the very end and expresses feelings of great self-reproach for leaving him in the care of other people. Furthermore, Chivers’ assumption that Barbara’s visit to Martin in the hospital on their wedding anniversary, portrayed before the closing scene of the film, is her final goodbye (ibid.: 68) is in my mind a rather hasty one to make. Certainly, the end of the film gives a sense of closure as Barbara packs away the memories of the past and returns to professional life. However, the portrayal says nothing conclusive about whether Barbara’s final visit on the screen is indeed her final visit, marking a definite and explicit closure of her life with Martin. Quite to the contrary, it is unclear whether Barbara does accept the neurologist’s advice that it would be best for her to accept that Martin is no longer her husband. While the development of his condition forces her to realize that he is no longer the man she married and that their relation is radically changed, this is not to say that Martin in her eyes is no longer her husband. Telling Martin that she has boxed up all the memories of the past, both good and bad, she also emphasizes that everything remains, even though it is in the past. Instead of seeing Barbara as freeing herself from responsibility and to pursue normalcy, a more charitable reading would be that she comes to the realization that neither she nor Martin can continue living in an idealized past but must instead come to peace with the present. The theme of relationality in Away from Her and En sång för Martin is not only made present in the portrayal of the relation between Fiona and

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Grant on the one hand and Martin and Barbara on the other, but also in the depiction of both Fiona and Martin’s self-reflection. While both films might, in different ways and to different degree, be said to reinforce a view of the person with dementia in terms of loss of self, they at the same time, I argue, complicate such a view by offering a picture that takes into serious consideration also the self-relational experience of the person suffering from dementia and the struggle to establish new perceptual norms and ways of being in the world. The loss of self is thus urgently experienced by the self losing herself. Away from Her depicts how Fiona at a dinner party, in mid-sentence of offering her guests more to drink, forgets the word ‘wine’ and, reflecting on her own state of mind, says, “I think I may be beginning to disappear.” At another point in the film she tells Grant, “don’t worry, darling. I expect I’m just losing my mind.” Fiona’s experience of disorientation is brought out also in less explicit and self-reflective ways, for instance in her expression of distress bordering on fear when Grant at one point in desperation grabs her and tells her he is her husband or in her attempt at covering up her failure to answer her doctor’s questions when being diagnosed. Also Martin in En sång för Martin is portrayed as expressing confusion, frustration, and fear over the onset and development of his condition. The early disorientation Martin expresses when conducting a public performance is depicted as involving a haunting certainty that there is something important he should be doing without knowing what it is. In a touching scene after a family dinner when all guests have left, Barbara finds Martin standing alone in the dining room in tears over his condition and alterations of his experience. Throughout the film, Martin is depicted as frustrated with not managing his composing and mixing up passages, and his frustration is expressed as outbursts of anger channeled toward Barbara who tries to correct him. Martin’s continuous outbursts of anger and aggression, the most violent and painful one at the end of the film that leads to his hospitalization, are, as I have suggested above, better read as expressions of Martin’s terrifying experience of the process of self-alteration rather than as symptoms of his condition of Alzheimer’s disease.

E THICAL IMPLICATIONS Thus far I have shown how both Away from Her and En sång för Martin can be productively read as focusing on the ways in which Alzheimer’s disease affects relations between the person with the condition and those

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persons with whom she or he are closely related. In this section, I will shift focus from the intercorporeal relations depicted on the screen of the two films to the intercorporeality between film screen and spectator in order to turn attention to possible ethical implications of approaching these films. 5 Films, as well as other forms of cultural expression and representation, solicit and sustain the possibility of ethical perception. They provide opportunities of encountering collective experience and common situations and dilemmas in scripted form, opening for new and productive ways of thinking through and theorizing the unscripted dramas of everyday life. Through the action of culture, writes Merleau-Ponty, “I come to abide in lives that are not mine” (1973: 87), and, as Alfred Tauber points out, cultural narrative, cinematic and other, “formulates ethical problems and solutions,” allowing us to encounter ethical dilemmas and decision making “in the full panoply of human behavior” by “tapping into collective experience” (1999: xvi) and our cultural and social imaginary. By offering encounters with ethical dilemmas and ambiguities of existence, the experience of film, I contend, holds the potential of transforming ethical perception and examining the conditions of ethical relations. Rather than seeing cultural representations as a layer in interaction with, but still separate from social and material reality, it is my contention that they are in intimate constitutive relation with and forming part of that reality. There is an intercorporeal connection not only between embodied subjects but also between the lived body and its surrounding natural, cultural, historical, and social world, and both are transformed, established, and reestablished through their encounters. In spite of being fictional representations, film and other forms of culture nevertheless “have the effect of something deeply felt and experienced,” to speak with Teresa de Lauretis (1999: 304; cf. Cohen-Shalev and Marcus 2012: 93-94), and they have the power of transforming individual lives as well as being transformed in being encountered. While the world on the screen is in important respects separate from the private world of the spectator, the two are nevertheless closely intertwined and the experience of film is both one of distance and one of intimate closeness. As much as the spectator might be able to take a de5

The intercorporeal relation between film and spectator is discussed in detail by Vivian Sobchack in her exploration of the materiality of film and film experience and of what she terms interobjectivity. See especially chapter 12, “The Passion of the Material,” in her Carnal Thoughts (2004).

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tached and objectifying view of what happens on the screen, observe without being seen herself, and ultimately turn off the screen or leave the movie theater, she may not always as easily be able to distance herself from being affected or to shake the feeling of a film. The world, events, and characters on the screen make their way into the reality of the spectator and call upon her to affectively engage herself in theirs. In this respect, what happens on the screen can intimately affect the spectator and her world in transformative ways. We are thus not only directed toward what happens on the screen in specific ways, but also exposed to the cinematic form, to the plot and narrative of film, the characters and their lives, their histories, judgments, relations, and ways of being in the world. This exposure is, however, not in any way passive, and as spectators we are co-constructing what we see on the screen, foregrounding certain things and passing over others. Our exposure to the world on the screen, I argue, furthermore involves an element of transformation as it implicates us in the world to which we are exposed and which affects us as singular beings as well as our surrounding world. Objects of our experience, such as film, are in important respects formed by our experience and, vice versa, our experience is formed by the objects to which we are exposed. The transformative intercorporeal relation of exposure between film and spectator, between the world on and off screen, opens a path for approaching questions concerning ethical perception, both as it is portrayed on screen and as it is invoked by the portrayal and solicited from its spectators. The two films Away from Her and En sång för Martin have both, as mentioned above, been characterized as depicting hopelessly negative stereotypes of Alzheimer’s disease and as being more concerned with the characters surrounding the characters afflicted with the condition rather than with the persons with Alzheimer’s disease themselves. An understanding of cultural representations as both constitutive of and constituted by the social and material reality of which they form part, such as I have put forth here, makes the question of the perpetuation and reinforcement of received negative clichés into a matter of formative encounters and interrelation between cultural representations, such as film, and their readers. In short, such an understanding locates an element of responsibility for the perpetuation of negative clichés on the reading of certain representations as perpetuators.

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STEREOTYPES My purpose has been to show how both Away from Her and En sång för Martin can be productively read as focusing on the ways in which Alzheimer’s disease affects relations between the person with the condition and people with whom she or he are closely related, and how these relations are constitutive of subjectivity. The two films, I have argued, do not make a choice between being primarily concerned with either the character with Alzheimer’s disease or the characters surrounding her or him. Instead, they bring to light how a constitutive intercorporeal connection between embodied subjects forms individual expressions and ways of being in the world. Even though neither of the films paints the onset and development of Alzheimer’s disease in very bright colors or as being without devastating loss, they do not therefore, as I have argued above, necessarily have to be read as perpetuating received negative clichés of the condition. I have demonstrated that other more productive readings are not only possible but also of significant importance for rethinking conceptions of Alzheimer’s disease and other conditions of dementia as leading to a loss of selfhood and identity. An intercorporeal conception of embodied subjectivity, emphasizing singular lived bodies as not only related with one another but also coming into being through those very relations, offers a way of thinking about subjectivity in dementia as radically altered rather than lost and as remaining in continuous becoming throughout the development of the condition. It thereby contests any ad hoc denial of agency and autonomy in cases of dementia. It furthermore prompts us to consider different implications of how we relate to others and our surrounding world, especially when those others are labeled and stigmatized in such a way that they might be easily dismissed as being in significant respects excluded from domains of normalcy. While not denying that the cultural reproduction of overly negative stereotypes may well serve to reinforce a monsterized view of Alzheimer’s disease as inevitably leading to a loss of self and being a fate worse than death, I have stressed the crucial importance of keeping in mind that cultural representations are not in any way simply given for a neutral spectator. Instead, they are continuously reproduced through perception, interpretation, and analysis. Not only how characters with Alzheimer’s disease are depicted but also how these characters are perceived and interpreted will

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matter for the ways in which stereotypical views of persons with Alzheimer’s disease are reinforced, challenged, and transformed. Rather than giving a one-dimensional portrayal that can be judged in ethical terms as either worthy of praise or blame, Away from Her and En sång för Martin, in my reading, offer encounters with existential and ethical dilemmas that do not afford easy solutions but instead demonstrate the continuously unfinished task of reflection, questioning, and re-evaluation. Instead of imposing any decisive ethical conclusion regarding questions of what is good or bad conduct, of autonomy, respect, and responsibility, the films invite us to continuously raise such issues anew and remind us that they can never be solved once and for all through any decisive ethical conclusion. These scripted dramas demonstrate how any deliberate and decisive conclusion is effectively put out of play when confronted with the lived experience of ethical dilemmas and the conditions of our existence.

R EFERENCES August, Bille (2001): En sång för Martin, Sweden: Film i Väst. Axmaker, Sean (2007): “Poignant ‘Away’ Paints a Painful Picture of Loss.” In: Seattle Post Intelligencer, May 10. Clive, Baldwin/Capstick, Andrea (eds.) (2007): Tom Kitwood on Dementia: A Reader and Critical Commentary, New York: Open University Press. Basting, Anne Davis (2009): Forget Memory: Creating Better Lives for People with Dementia, Baltimore: Johns Hopkins University Press. Cahill, Ann (2011): Overcoming Objectification: A Carnal Ethics, London and New York: Routledge. Chivers, Sally (2011): The Silvering Screen: Old Age and Disability in Cinema, Toronto: University of Toronto Press. Cohen-Shalev, Amir/Marcus, Esther-Lee (2012): “An Insider’s View of Alzheimer: Cinematic Portrayals of the Struggle for Personhood.” In: International Journal of Ageing and Later Life 7/2, pp. 73-96. De Lauretis, Teresa (1999): “Popular Culture, Public and Private Fantasies: Femininity and Fetishism in David Cronenberg’s M. Butterfly.” In: Signs 24/2, pp. 303-334.

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Herskovits, Elizabeth (1995): “Struggling over Subjectivity: Debates about the ‘Self’ and Alzheimer’s Disease.” In: Medical Anthropology Quarterly 9, pp. 146-164. Hughes, Julian (2011): Thinking Through Dementia, Oxford and New York: Oxford University Press. --- /Louw, Stephen/Sabat, Steven (2006): “Seeing Whole.” In: Julian Hughes/Stephen Louw/Steven Sabat (eds.), Dementia: Mind, Meaning and the Person, Oxford and New York: Oxford University Press, pp. 139. Hydén, Lars-Christer/Lindemann, Hilde/Brockmeier, Jens (eds.) (2014): Beyond Loss: Dementia, Identity, Personhood, Oxford and New York: Oxford University Press. Kitwood, Tom (1997): Dementia Reconsidered: The Person Comes First, New York: Open University Press. Kontos, Pia (2004): “Ethnographic Reflections on Selfhood, Embodiment and Alzheimer’s Disease.” In: Ageing and Society 24, pp. 829-849. --- (2005): “Embodied Selfhood in Alzheimer’s Disease: Rethinking Person-centred Care.” In: Dementia 4/4, pp. 553-570. --- (2014) “Musical Embodiment, Selfhood, and Dementia.” In: LarsChrister Hydén/Hilde Lindemann/Jens Brockmeier (eds.), Beyond Loss: Dementia, Identity, Personhood, Oxford and New York: Oxford University Press, pp. 107-119. Käll, Lisa Folkmarson (2012): “Erotic Perception: Operative Intentionality as Exposure.” In: Jonna Bornemark (ed.), Phenomenology of Eroticism, Stockholm: Södertörn Studies in Philosophy, pp. 225-245. --- (2014): “‘She’s Research!’: Exposure, Epistemophilia and Ethical Perception through Mike Nichols’ Wit.” In: Kristin Zeiler/Lisa Folkmarson Käll (eds.), Feminist Phenomenology and Medicine, Albany: SUNY Press, pp. 241-262. Matthews, Eric (2006): “Dementia and the Identity of the Person.” In: Julian Hughes/Stephen Louw/Steven Sabat (eds.), Dementia: Mind, Meaning and the Person, Oxford and New York: Oxford University Press, pp. 163-177. McLean, Athena (2007): The Person in Dementia: A Study of Nursing Home Care in the US, Ontario: Broadview Press. Merleau-Ponty, Maurice (1962): Phenomenology of Perception, London and New York: Routledge.

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--- (1964): “The Philosopher and His Shadow,” Trans. by Richard McCleary. In: Signs, Evanston: Northwestern University Press, pp. 159181. --- (1968): The Visible and the Invisible, Evanston: Northwestern University Press. --- (1973): The Prose of the World, Evanston: Northwestern University Press. Nelson, Hilde Lindemann/Scholz, Sally J. (2003): “Holding Someone in Personhood.” In: APA Newsletters 3/1, pp. 92-94. Onstad, Katrina (2007): “An Actress With Doubts, but Not About Directing.” In: New York Times, April 29. Örulv, Linda (2008): Fragile Identities, Patched-up Worlds: Dementia and Meaning-Making in Social Interaction, Linköping: Linköping University. Polley, Sarah (2006): Away from Her, Canada: Film Farm. Scott, A. O. (2007): “Time’s Wounds, and the Heart’s.” In: New York Times, May 4. Sabat, Steven (2001a): “Surviving Manifestations of Selfhood in Alzheimer’s Disease: A Case Study.” In: Dementia 1/1, pp. 25-36. --- (2001b): The Experience of Alzheimer’s Disease: Life Through a Tangled Veil, Oxford and Malden: Blackwell. --- /Harré, Rom (1992): “The Construction and Deconstruction of Self in Alzheimer’s Disease.” In: Ageing and Society 12, pp. 443-461. Sinnerbrink, Robert (2011): New Philosophies of Film: Thinking Images, London and New York: Continuum. Sobchack, Vivian (2004): Carnal Thoughts: Embodiment and Moving Image Culture, Berkeley: University of California Press. Swinnen, Aagje (2013): “Dementia in Documentary Film: Mum by Adelheid Roosen.” In: Gerontologist 53/1, pp. 113-122. Tauber, Alfred (1999): Confessions of a Medicine Man: An Essay in Popular Philosophy, Cambridge: The MIT Press. Zeiler, Kristin (2014): “A Philosophical Defense of the Idea that We Can Hold Each Other in Personhood: Intercorporeal Personhood in Dementia Care.” In: Medicine, Health Care and Philosophy 17, pp. 131-141.

III. MEDIA DISCOURSES AND PUBLIC UNDERSTANDINGS

Dementia in the making Early detection and the body/brain in Alzheimer’s disease A NNETTE L EIBING

“Peanut butter helps diagnose Alzheimer’s disease” (MNT 2013), reads the rather awkward and somewhat sensationalist title of a recent article that presents an emerging conception of dementia as a syndrome in need of early detection and prevention. The peanut butter story – hinting at the decline of olfactory capacities observed in some individuals who are developing, or already experiencing, a dementia – is but one sign of a new culture of dementia research.1 Other headlines with a similar message can be found on an almost daily basis in newspapers, TV shows, and internet health forums: “Blood test may help diagnose Alzheimer’s disease before start of symptoms” (Fox 2014), for example, is an online CBC News article that has appeared on several other news sources, including the website of the American Alzheimer’s Association.2 This text, in concordance with many others, describes yet another example of the growing number of techniques developed for capturing early, ideally pre-symptomatic, signs of dementia (cf. Alzheimer’s Association 2014b; Leibing 2014). The rationale behind these recent tactics is the relatively new and widely propagated notion that once dementia manifests, the pathological changes in the brain 1 2

Olfactory dysfunction is also an early diagnostic marker for Parkinson’s disease (e.g. Haehner et al. 2009). It would be interesting, but is beyond the scope of this article, to follow the same scientific facts being translated into different media landscapes, nationally and internationally.

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are already so far advanced that interventions such as the current way of prescribing pharmaceuticals are no longer effective (e.g., Beason-Held et al. 2013).3 Prevention and early detection of dementia – technologies of self, based on the constantly active self, as well as the detecting expert – have thus taken up a major part of the current research agenda. Consequently, lifestyle changes (such as physical activity, smoking, and diet), linked to the regulation of cardiovascular risk factors (like hypertension, diabetes, and heart disease), as well as the ongoing search for an ever better imaging and validation of biomarkers (with a current focus on β-amyloid and tau proteins, and an emphasis on early conditions such as mild cognitive impairment and prodromal dementia), have come to represent the primary areas of concern in the contemporary field of dementia research (cf. Vellas et al. 2014 in the new Journal of Prevention of Alzheimer’s Disease). In fact, dementia, for some, has become a lifelong endeavor: “Cognitive health begins at conception,” write Barnett, Hachinski, and Blackwell (2013: 246). In the 1990s, the biomedical research agendas focused primarily on post-symptomatic interventions – based on the idea that Alzheimer’s disease (and some other forms of dementia) is linked to neurodegeneration and cholinergic deficiency in the brain. The currently available anti-dementia drugs were developed within this epistemology. The more recent shift towards ‘earliness’ – the ideal of early detection, early intervention, and prevention – exists in tandem with the development of new drugs or the earlier use of existing drugs targeting mainly β-amyloids, tau proteins, inflammation, and insulin resistance (or a combination of drugs influencing different disease pathways, comparable to the AIDS cocktail).4 In recent publications, I have described in more detail how the same biomarkers and conditions (such as the highly contested ‘mild cognitive impairment’) have 3

4

This new logic is described by Moyer: “The current thinking is that well before dementia manifests, protein aggregates trigger a number of cellular changes that lead to irreversible neuronal injury. But the crux of the problem for drug development is that Alzheimer’s is diagnosed long after this cellular damage occurs, so clinical trials of new drugs for the disease include only people for whom the underlying pathology is already beyond repair. According to this logic, treatments targeting amyloid protein – which are all at this point experimental, as none have been approved by drug regulators – might not do any good” (2011: 235; cf. Roe et al. 2013). Cf., for instance, the American Alzheimer’s Association (2014): http://www.alz. org/research/science/alzheimers_treatment_horizon.asp.

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changed their indicative value – from a sign used for (post-symptomatic) diagnosis and research in the 1990s to a current indicator of ‘earliness’ (Leibing 2014; Leibing and Kampf 2013). In the following, I first want to present these changes and the way they are discussed in the media, and afterwards reflect on the impact of those changes.

F ROM

BRAIN CHEMISTRY TO THE BODY / BRAIN A Montreal-based newspaper, La Presse, recently published an article about Alzheimer’s disease with the following title: “Avoid solitude, and exercise in order to live longer” (Santini 2014 [own translation]). This message (which has been reproduced through various international media outlets) promotes the idea of prevention via active aging and lifestyle changes. These assertions – which mirror the recommendations made for numerous other illnesses, including cancer, hypertension, diabetes (cf. Leibing and Kampf 2013), and (successful) aging in general (e.g., Katz 2000) – demonstrate how the brain and its associated health conditions are no longer conceived of as relatively autonomous, with few connections to the rest of the body, as was the case only a few years ago (brain chemistry). This relative autonomy – or, in other words, the idea of a structural disconnect and the brain’s superiority over the body – is prevalent even within discussions of the brain’s plasticity (its ‘rewiring’) and epigenetics – both of which refer to the shaping of a reactive brain through its environment. However, the idea of what is a dementia has changed, from defining it predominantly as a brain condition, a neurochemical disturbance, to a general health condition. The new heart-brain connection (‘what is good for your heart is good for your brain’) implies that interventions targeting the brain as part of the body, and especially cardiovascular risk factors, will strongly influence cognitive functioning, promising a ‘good’ old age through the right attitude (body/brain). As a consequence of body/brain, genetics are losing part of their explicative force in the media. The prevailing assertion that only a very small group of people have the familial form of dementia (in which genetics play a strong role), as well as the hope that genetics will eventually be controlled through prevention, is articulated by the American Alzheimer’s Association on their website: “[A]s development of potentially disease-modifying drugs continues, genetic testing could one day become a valuable tool to identify individuals who might benefit from early, proactive intervention to reduce

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risk” (AA 2014a). In short, it is no longer exclusively the (superior and autonomous) brain that holds the key to who we are, but rather, we are what we do: Inactivity has become the public health enemy number one.5 The brain, once an issue that was rarely discussed in the ‘new public health’ (Bell et al. 2011; Petersen et al. 2010; Petersen and Lupton 2000) – the ‘new’ referring to the increasing moral obligation of self-care, a major shift towards risk and prevention, and the turn towards market-based health care systems – has thus become incorporated into a ‘preventive self’ logic that is all encompassing: Brain is body.6 There is a second aspect transmitted through the La Presse headline (Santini 2014). The recommendation to fight solitude carries two explanatory models concerning the aging body. The first centers on the idea that brain function can be directly stimulated by the creation of new synaptic connections (brain chemistry) – this occurs not only through thinking activities, but also through social ones; being in contact with others “can reduce stress levels, which helps maintain healthy connections among brain cells,” explains the Alzheimer’s Association on its website (“Remain socially active” AA 2014) in reference to the plasticity of the brain and the destructive forces of stress on cognitive functioning (cf. Jackson 2013). The second model understands general individual biology to be profoundly social: This theory contends that being alone can be the grounds for depression, bad sleep, pathogenic reactions in the immune system, and high blood pressure (Santini 2014, based on a study at the University of Pittsburgh) (body/brain). This image challenges, to a certain degree, the notion of the ‘cerebral subject’ (or ‘brainhood’) so well described by Vidal (2009) and others (e.g., Rose and Abi-Rached 2013) – because the contemporary subject of most industrialized nations is increasingly understood to be linked to a biosocial body/brain. In other words, the new landscape of dementia research counters, to a certain extent, the brain’s superiority over the body. The implications for the preventive self, for those who have not been able to avoid disease, and those who have lost the battle to slow down their decline, are still to be seen. 5 6

Cf., for example: “Physical inactivity kills. It is causing about one in 10 premature deaths around the world annually” (USA News 17.07.2012); “[p]hysical inactivity may be as deadly as smoking” (WebMD 17.07.2012). Examples would be titles such as: “Walking away the blues: Exercise for depression in older adults” (Dang 2010) or “Eat right, keep fit” – the number two prevention recommendation of the Canadian Mental Health Association (2010).

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As a comparison, a CBS article from 2000 aptly illustrates how different forms of dementia, and its most common form, Alzheimer’s disease, were conceptualized only a few years ago. The article focuses on those specific interventions used once a diagnosis has already been made. In the article, Columbia University neurologist Richard Maheux stated his optimism regarding the development of future cures that would combat dementia after its onset: “If a person has symptoms now or is recently diagnosed, I think the future looks better than it did a year ago, two years ago, five years ago. […] They will take a drug that will either stop their disease or reverse it” (CBS 2000). The brain – and not the body/brain – is considered the site where a dementia develops and should be treated: “A map of the brain is a map of the disease. […] It is a disease […] which slowly kills off brain cells, distorting the appearance of the brain and reducing its weight by as much as half.” The author of the CBS article explains further that [e]very time you learn something, every time you stimulate your mind, you’re forming new connections in the brain. The more of these you produce over your life, the more you have to lose [...] from a disease before you have symptoms. (ibid.)

In this article, too, as in the heart-brain connection mentioned above, aerobic and other physical activities are directly referenced: “Researchers believe the happier and healthier someone with Alzheimer’s is, the slower his or her decline. So by doing aerobics every day and taking one of the new drugs now available, Roy Duhon [name of a patient] could be slowing down his symptoms by months, even years” (ibid.). What is meant here is that there is a relationship between aerobics and the slowing down of the disease (brain chemistry), rather than its prevention, and thus general wellbeing is linked to scores of happiness; a mental process. In addition, the CBS article emphasizes the positive effect aerobics can have on caregiver health; as a result, there is the improved and prolonged support of individuals living with a dementia. Cardiovascular factors – while having played a role in the past in vascular and mixed dementia (resulting from mini-AVCs) – have not commonly been associated with the most pervasive form of dementia, Alzheimer’s disease. Now, however, the boundaries between the diagnostic categories have become increasingly porous. Indeed, many specialists have begun to categorically amalgamate these conditions by simply speaking of ‘dementia,’ rather than specifically referencing vascular dementia versus Alz-

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heimer’s disease (e.g. Kalaria 2010). Others have observed the high prevalence of ‘mixed dementia’ (both vascular dementia and AD), a diagnostic category that before was considered of minor importance. 7 These changes in the understanding of dementia – first, the prioritization of early and pre-symptomatic detection and prevention and, second, the consideration of dementia as part of a general, major syndrome, part of which is of cardiovascular origin and in which, additionally, cognition is losing its status as the only core symptom (for a more detailed analysis of this last point cf. Leibing 2009a, b) – are reflected in the headlines of recent news output (see above). One implication of these new conceptualizations of dementia is that the much-feared brain condition of old age is now being understood as an (apparently) preventable syndrome. Furthermore, in line with the current importance given to ‘self-care’ in many health care systems, individuals (and their doctors) seem to have more control over their health, including cognitive decline. However, these changes can be described as knowledge in the making, as an unfinished and fragile process of emerging truths.

K NOWLEDGE

IN THE MAKING New inventions or creations are not about replacing the old with the new, but adding to the old, producing new articulations. (Stengers 2003: 264)

Distinguishing between more established and emerging knowledge, or, following Rescher (2005), separating ‘common beliefs’ – unquestioned and obvious beliefs shared by a majority – from ‘common-sense beliefs’ – those which everybody should know – might help to highlight different, coexisting kinds of knowledge and the ‘contamination’ of older by more recent kinds of scientific insights. It is likely that most individuals still consider dementia to be a brain disease and view prevention as taking the form of rather unspecific brain training. Today, the ‘use it or lose it’ metaphor is strongly implanted in people’s reasoning:

7

The Alzheimer’s Society Canada (2014), for example, writes that “autopsy studies indicate that the condition may be significantly more common than previously realized” (cf. http://www.alzheimer.ca/en/About-dementia/Dementias/ What-is-dementia/Mixed-dementia).

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At a recent session […] Deep [a gerontologist] encouraged several dozen senior citizens to flip the pictures in their homes upside-down. It might baffle houseguests, but the exercise crowbars the brain out of familiar grooves cut deep by years of mindless habit. […] Brain neurobics is about getting us out of those ruts, those pathways, and shaking things up. (Erb 2012)

Several authors have written about the current ‘neuro hype’: “[T]he brain has become or is fast becoming something of a ‘project’ in its own right, attended by attempts to stall, slow down, protect or prevent neuro-related cognitive decline and degeneration through a variety of cultural pursuits, commercial products, and self-help programs,” explain Williams, Higgs, and Katz (2012: 67; cf. Rose 2005; Ortega and Vidal 2010, among others). However, the recent changes in the understanding of dementia, such as the body/brain model (see, for instance, note 6), are now ‘leaking’ into common knowledge. “In the past few years, the brain has lost its influence; fMRI hucksters are on the run,” comments journalist Daniel Engber (2013). He shows that the neuro-hype peaked around 2007 and is now dramatically declining (such as in neuro-bestsellers, neuro-self-help, and neuromarketing), resulting in a wave of ‘neuroskeptics’ (Brookshire 2013; Quart 2012, among others). When established knowledge is changing, social scientists generally problematize ‘discovery’ to explain emerging truth claims; and this often implies the question of intentionality and authorship. For quite some time, the influence of the pharmaceutical industry on the shaping of diagnostic categories has been widely analyzed. ‘Earliness’ and its concomitant medical interventions now provide new opportunities for the already existing medications targeting cognition, as current prescription practices show that these drugs have a very limited efficacy (see note 3 for the logic behind this). Furthermore, they do not significantly impact the activities of daily living – a more recent and rather unspecific therapeutic target of Alzheimer drugs (cf. Leibing 2009a). New drugs are being developed that target early pathways; there is also a strong ‘repurposing’ of drugs that are marketed for other illnesses (cf. Appleby et al. 2013). However, the new emphasis on ‘earliness’ in dementia research is not solely the result of profit seeking by the pharmaceutical industry, although drug marketing plays an important role in the current knowledge-making (Leibing 2009a, b; Whitehouse and George 2010; Lock 2013; cf. Dumit 2012 on ‘drugs for life’). In fact, earliness needs to be seen in the wider context of a “new paradigm of health” (Moore 2010) which started more or

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less in the 1950s, and which brought a number of changes, such as the development of a risk-factor concept and ‘at-risk groups’, along with an increased turn towards prevention and a specific focus on self-care and behavior (e.g., Armstrong 2012; Timmermann 2011; Rothstein 2003). The search for early biomarkers and prevention is part of this more general trend, relatively similar to research targeting a number of other diseases, such as Parkinson’s disease and cancer. For instance, the turn towards precancerous cells and the discourse of risk was analyzed in detail by Ilana Löwy (2010). Other factors – at least in North America – are the incorporation of ideals such as active aging, as well as those in line with the JudeoChristian values condemning idleness, and the denial of death and deathfighting practices (cf. Bauman 1992). When changes occur, it is also important to reflect on how these emerging ideas impact people. The ‘new dementia’ is still in the making, and, when examining popular texts, images, and metaphors, one can observe a patchwork of information that provides glimpses into new possible forms of personhood. In the case of dementia research, commonsensical knowledge can be conceived of as an ‘episteme in the making’ or a Fleckian thought style, capturing the multilayered and dynamic truths that influence the way people relate to the world they live in.

D EMENTIA IN THE MEDIA Several authors have written about how the ‘experiencing body’ is not innocent. In a similar vein to Hacking – who is widely published on the subject of ‘making up people’8 – Bowker observes that “[i]n general, we use scientific representational forms to fashion our experience. […] We internalize these accounts and experience them as our own” (2008: 5). The media, in its numerous forms, are probably the strongest vehicle for transmitting and popularizing these representational forms, which people then incorporate into their own lives. Furthermore, information presented through newspapers, the internet, and television frequently results in the simplification of scientific ideas while simultaneously revealing core values of a given society. A number of studies about dementia in the media reflect the discussed changes, especially when comparing older with newer media output. 8

For an overview on the writings of Hacking regarding ‘making up people,’ cf. http://www.ianhacking.com/makinguppeople.html.

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The 1990s were declared ‘the decade of the brain’ by George H. W. Bush. Alzheimer’s disease became the flagship disease of brain research and was widely discussed in the public. As a result, Doyle and colleagues (2012) show in their comparison of the Australian media reporting on dementia in 2000/2001 with texts from 2006/2007 that people became, in general, more knowledgeable about this syndrome, especially following increases in the promotion of activities by the government and advocacy organizations. However, although Alzheimer’s disease became a subject of common knowledge, authors analyzing the media from the 1990s and the early 2000s generally criticize the lack of acknowledgement of those individuals who, because of cognitive impairment (and behavioral problems), were described as ‘empty shells’ or ‘vacant houses,’ or people living a ‘death in life’ (e.g., Herskovits 1995; Sabat 1998; Fox 1989). These authors lamented the unnecessary ‘social death’ which can occur when caregivers speak for the individual with a dementia (even at an initial phase), when metaphors such as ‘senior moments’ meld forgetfulness with general aging, and when the numerous dementia victims who get lost (due to their lack of orientation) are described as totally dependent and out of control. This kind of texts therefore criticize the common tendency to portray dementia victims as being ‘not there anymore’; it should be noted, however, that this critique is based on early phases, and advanced phases of dementia are rarely included as part of this advocacy. Kirkman argues that individuals with Alzheimer’s disease are portrayed as “victims of the disease but also victims of the health services” (2006: 78), since negligence found in care facilities is a common topic: Dementia patients, in popular accounts, live in an apocalyptic world in need of advocacy. Clarke (2006), analyzing US and Canadian media of the 1990s, paints a similar picture: The disease is one of the missing person (literally and metaphorically) and the patient a passive recipient of drug interventions. The texts analyzed by Clarke conceive the origin and the treatment of dementia as brain-centered, targeting mainly β-amyloid peptides and acetylcholine levels in the brain. Fiction films about dementia, covering the years from 1970 until 2004, are the topic of Segers’ research, who also observes a general passivity regarding Alzheimer’s patients: He describes a therapeutic nihilism, since the characters in the movies rarely do anything to treat the disease. These individuals almost never take medications (only 3 out of 25); and in one

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film the neurologist states that “love and mental gymnastics are the best treatments” (2007: 57). These images and metaphors are slowly changing, since earlier detection and diagnosis – due to a greater general consciousness of first symptoms and what I have called elsewhere the ‘personhood movement’ (cf. Leibing 2006) – have led to a longer initial period and a prolonged recognition of the autonomous, active, and socially participating person. With the exception of a Belgian study (Van Gorp and Vancruysse 2012) in which the researchers concluded that the image of dementia as a hopeless condition that steals the patient’s identity persists, several authors analyzing more recent texts on dementia assert there has been a change from these previous depictions. For instance, Anderson and colleagues (2009) observe that in a study from 2003, the interviewees thought that ‘nothing can be done,’ while in the following years (more or less from 2006 onwards), people became increasingly active towards dementia, including adopting preventive measures. The authors state that “respondents identified participating in mental activities (puzzles) and eating a healthy diet as among the types of activities they believed were helpful for [maintaining] brain health” (ibid.: 8). The result of a National Health Service study on dementia in the UK media since 2007 well describes the new image of dementia. The British researchers write that their analysis “suggests that newspapers [now] focus mainly on ways of preventing dementia, such as lifestyle choices” (NHS 2011: 3). Once prevention is communicated as a possibility, suggesting that people have a greater control over their (brain) health, does this also influence the way people experience or think about dementia? Kessler and Schwender (2012), by analyzing the growing number of photos showing individuals with a dementia in news magazines between 2000 and 2009, argue that – at least in Germany – the portraits of these patients might be even too positive, and, therefore, inadequately prepare individuals for the challenges of living with the syndrome. The authors come to the conclusion that the “‘positive’ (potential-oriented) portrayals clearly dominated” through images of “characters with dementia […] shown as living an autonomous as well as socially integrated life” (ibid.: 267-268). They conclude (just like Van Gorp and Vancruysse op. cit.) that positive images can result in a decline of the taboo and less stigma burdening the individual living with that condition; while at the same time this may also reduce the efforts a

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society makes in creating better living conditions for people affected by a dementia.

O THER TRANSLATIONS

OF THE NEW CULTURE OF DEMENTIA RESEARCH Although different forms of knowledge about dementia exist around the world, in many countries, the majority of individuals who are struggling with the fear or experiencing the initial signs of dementia – within themselves or in others9 – have been previously exposed to fragmented information from diverse sources. However, for specific questions they will generally turn to authoritative knowledge-makers such as their physician and major organizations like the local Alzheimer’s Association (Nettleton, Burrows, and O’Malley 2005). Taking the website of the American Alzheimer’s Association (AA) as an example – arguably the most important source for people affected by the syndrome –, the changing landscape of dementia research with its new focus on earliness and the body/brain becomes evident. Several parts of the AA website are made for facilitating the direct contact between patients, caregivers, and health professionals. A blog in which people can ask questions and exchange their experiences while also getting an immediate answer from the other members is a powerful and quick resource when in need of information (e.g., Akrich and Méadel 2002; Cotton and Gupta 2004; Leibing 2009c). Because these contributions are both coming from and directed towards individuals who have already been diagnosed, the postings are predominantly focused on the difficulties and doubts concerning daily life, symptom management, and emotional support – not about prevention. However, within the outreach section visitors can also click on information regarding the latest research. These short texts are translations of scientific articles into simplified language, written by neurologist Michael Rafii, a well-known researcher and clinician and the author of another translational blog (cf. www.acds.org). The first articles on the Alzheimer’s Association blog10 clearly mirror the ‘culture of earliness’

9

What these first signs are is still under discussion – Berrios (1989), for example, writes that in the earlier stages, cognitive decline is much less important than is usually assumed. 10 Cf. http://blog.alz.org/category/alzheimers-the-brain/ (accessed in March 2014). Older posts are also available.

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described above and are based on the detection/imaging of early biomarkers and prevention. People in need of information can click on “A year in review,” “Medicare’s decision on whether to cover amyloid brain PET scans,” “Recent developments in amyloid imaging,” “MR study shows that amyloid deposits occur years before diagnosis,” and “Studies reveal very early cognitive declines with familial Alzheimer’s studies.” In the article providing an overview of research novelties from 2013 (“A year in review”), Rafii comments: Perhaps one of the biggest events in the Alzheimer’s research world this year was the launch of the first clinical trial to prevent Alzheimer’s dementia in the general population. The trial, Anti-Amyloid in Asymptomatic Alzheimer’s Disease, or A4, is a three-year study looking at the effectiveness of a drug given to subjects who have absolutely no outward symptoms of memory loss but have positive amyloid scans in the brain. [own emphasis]

Rafii, who receives grant/research support from Janssen Pharmaceuticals, Genentech, Hoffman-La Roche, and Elan Corporation, and who is a consultant to Nestle Health Science and a member of the speakers’ bureau for Novartis AG, puts a lot of emphasis on prevention through drugs. He is also part of the ADCS (Alzheimer’s Disease Cooperative Study) that “is part of the NIA Division of Neuroscience program’s effort to facilitate the discovery, development and testing of new drugs for the treatment of AD and […] is part of the Alzheimer’s Disease Prevention Initiative” (ADCS 2014 [own emphasis]). Several prevention studies are already underway or have been concluded. While β-amyloid as a biomarker is losing its importance for the development of drugs due to several failed trials (although some results are still underway), other biomarkers or multi-target interventions are being investigated. Those financed by the pharmacological industry are obviously focused on drug interventions, while several other initiatives with independent funding look at prevention through lifestyle changes and the control of cardiovascular risk factors: The European Dementia Prevention Initiative (EDPI), for example, investigates how prevention in mid-life might modify the incidence of dementia through lifestyle changes. These kind of (independent) studies result in a different kind of translation and, therefore, in a culture of prevention that does not necessarily focus on medications. As an example, Helpguide.org, a website conceived by two psychologists translating research on health issues from sources such as Harvard Health Publications explains that

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[f]or many years, we’ve been told that there’s little we can do to prevent Alzheimer’s disease and other types of dementia but hope for the best and wait for a pharmaceutical cure. But the truth is you can reduce your risk by eating right, exercising, staying mentally and socially active, and keeping stress in check. By leading a brain-healthy lifestyle, you may be able to prevent Alzheimer’s symptoms and slow down, or even reverse, the process of deterioration.

In the case of the British Alzheimer’s Society, medication research is funded; however, these drugs are already in existence for those conditions that appear to negatively impact cognition, such as heart disease or diabetes. 11 Solomon and colleagues (2014) list many of the current initiatives and trials, as well as their varying types of prevention. Although this comparison is only an initial evaluation of the data, and a more systematic study is needed, it seems as though slightly varied messages are sent to individuals seeking information about dementia – thus possibly creating various cultures of prevention. Does it make a difference? Earliness is a dangerous endeavour if profit is the desired outcome. A recommendation to do more sports and eat healthier food does not necessarily sell drugs. Therefore, earliness needs to be translated into the consumption of medications, as happened before with statins for cholesterol or antihypertensive drugs (Greene 2007).12 The pharmacological industry’s heavy investments in prevention demonstrate how the general idea of earliness is the target that, once implanted, will give these early drug interventions more credibility.13 However, preliminary data suggest that people do not necessarily refer to medications, but rather to activities when talking about prevention (cf. Will and Weiner 2013 on statins); 14 studies like the one mentioned by Rafii (above), on the other hand, describe the general population as the target for drug interventions. 11 Cf. http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID= 1629. 12 Lifestyle issues are – at least partly – medicalized with statins and similar medications. Statins (cholesterol-lowering medications) are currently the most widely prescribed medication group in the United States, which, after some authors, are being overprescribed and, for some patients, are even dangerous (e.g. Wilson 2010). Pfizer’s Lipitor alone, patented in 1997, earned the company “around US$130 billion during its 14 years on the market, making it the world’s bestselling drug of all time” (“Lessons” 2011; cf. Greene 2007). 13 A similar process – the persistance of an idea even though it has been severely criticized and discarded – happened with behavioral and psychological symptoms of dementia (see Leibing 2009a). 14 “Sociologists should be cautious about assuming there will [always] be demand for new pharmaceutical products,” warn Will and Weiner (2013:1).

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It could be argued, as some studies seem to indicate, that the rigorous control of cardiovascular risk factors may lower the incidence of dementia (Sachdev 2014) – although Williams and colleagues have found that “the current evidence is insufficient to recommend interventions” (2010). Because of the highly heterogeneous nature of dementia, no single intervention will successfully prevent the syndrome in everybody. And even a cocktail of drugs taken as prevention would mean not only immense costs since everybody is at more or less risk of dementia but also a major health risk when people regularly take, over a long period of time, drugs targeting major mechanisms in the (still healthy) body. And, since in most cases it is impossible to predict who will be affected by dementia, early medication would only make sense for those at a very high risk, or, in the (unlikely) scenario that a drug is developed with no major side effects, thus allowing for general preventive use.15 In her history of cancer prevention mentioned above, Löwy questions the ‘advances’ that come with preventive practices regarding cancer outcomes. The dementia prevention movement is more recent; however, both pathologies are based on complex and heterogeneous disease pathways – on which prevention may have an impact – but in both cases, overly narrow research will never reach all forms of dementia (or cancer).

C ONCLUSIONS : Q UESTIONING CHANGES In this essay, I have suggested that recent developments in the research agenda of dementia and its popularization might have an impact on the way individuals understand and live with this heterogeneous syndrome. The changes from brain-centeredness to the brain/body, a general notion of the affected individual who was once a victim but has since become an active agent of self-care (in the forms of both pre-symptomatic prevention as well as post-diagnosis action to slow down further decline), are in need of further research to evaluate their exact impact on people’s lives. The results from the ‘Healthy Brain Initiative’ (Centers for Disease Control and Prevention and the Alzheimer’s Association 2007) clearly mirror these changes towards earliness, the body/brain, and the expectations that already exist in some parts of the US population: 15 However, the history of long-term vitamin intake as unproblematic prevention shows that substances considered harmless at one historical moment can change into nocive substances at another time (at least for some vitamins; Mitka 2014).

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Yet, there are emerging signs that Americans look to the future with hope. Based on several surveys, men and women in this country are willing to take important steps to improve their cognitive health. Nearly 9 of 10 people reported that they thought it is possible to improve cognitive fitness. […] Six of 10 stated that they felt they should have their cognitive health checked routinely, much like a regular physical checkup. More than 8 of 10 (84%) reported that they took some time nearly every day to engage in activities that may be associated with improved cognitive health…

Most articles provide answers and recommendations; I want to end this text with some questions, which, I think, might become relevant in the next years of dementia research: First of all, does active prevention diminish the anticipation and fear of cognitive decline through a generally greater control of brain health? In line with this question, does secondary prevention provide a greater control over – or slowing down of – decline in a disease that once was described as hopeless and as ‘death in life?’ Do drugs prevent disease better than lifestyle changes and at what price (healthwise and economically)? Furthermore, it seems that the current research trend puts every effort into pre-symptomatic and early stages of dementia – what does this mean for individuals in later stages? Do they receive less attention and researchers less funding? Caregivers were once a central issue in dementia studies (frequently referring to the ‘caregiver burden’) – does the preventive self now mean a greater independence from family and state caregivers? And will this result in more respect and less diminishing of individuals experiencing cognitive decline or rather in less effort made to help with issues of dependency, and in a greater stigmatization of the need for help?

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The meanings of early diagnostics for Alzheimer’s disease in Dutch newspapers A framing analysis Y VONNE C UIJPERS & H ARRO VAN L ENTE

One of the key interests in current biomedical research and clinical practice is detecting Alzheimer’s disease at milder stages. The goal of early diagnosis is to unravel the underlying pathological processes that precede the symptoms of dementia by identifying and validating biomarkers. The idea is that this will enable a more reliable and earlier diagnosis, maybe even at a pre-symptomatic stage, and speed up the development of diseasemodifying treatments (cf. EU Joint Programme NDR 2012; Mueller et al. 2005). The quest for biomarkers is a medical endeavor and is also gradually being taken up in clinical practice and included in new diagnostic guidelines. Yet early diagnostic tests not only contribute to biomedical research, they also affect those who suffer from Alzheimer’s. The mere prospect of an early diagnosis changes personal outlooks and societal responses to the disease. Thus, early diagnosis transcends the confines of medical and clinical practice and acquires different meanings in society. Many scholars have argued that Alzheimer’s disease is much more than a medical phenomenon, that it is a psychological, social, and cultural phenomenon which is enacted in many practices with different meanings and values (cf. Lyman 1989; Kitwood 1990, 1997; Downs 2006; Moser 2008, 2011; Innes 2009; Innes and Manthorpe 2013).

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Building on this line of research, this chapter investigates the meanings of early diagnostics in society and their relationship to broader conceptualizations of Alzheimer’s disease by analyzing how early diagnosis is framed in Dutch newspaper articles. We show that different meanings of early diagnostics are intertwined with specific understandings of Alzheimer’s disease and its future. The focus on early diagnosis is new in studies of the meaning of dementia. We expect that it will contribute to a better understanding of Alzheimer’s disease as a societal phenomenon rather than just a medical or personal problem.

C ONSTRUCTION OF MEANINGS IN NEWSPAPERS It is a basic tenet of social theory that meanings are not givens but result from interactions and interpretative struggles. Meaning is constructed by positioning an act or a thing cognitively, morally, or practically within a network of relations. Such a construction can take place in any context: in face-to-face interaction, in practices, within groups, or in society at large (Weick 1995). The construction of meaning has been addressed in particular in discourse analysis and framing analysis. These traditions examine meaning-making mainly by analyzing particular ways of talking about and understanding the world (or an aspect of the world) in texts. A general starting point of all approaches to discourse analysis is that ways of talking do not neutrally reflect the world but actively create and change it. For instance, newspaper articles are not mere representations of pre-existing realities, but rather a way in which the social world can be (re-) produced and changed (Jorgenson and Philips 2002). Framing approaches emphasize that meaning-making is enabled by highlighting particular aspects of a perceived reality while simultaneously occluding or downplaying other aspects. When changes are made in what is prominently displayed, the character, causes, and consequences of any phenomenon become radically different (Van Gorp 2007). Discourse and framing analysis stress that ways of talking about and understanding the world in texts are both an indicator of social realities and an active way to constitute them. In most cases, an existing discourse develops over time and consists of competing interpretations. Which interpretations are more readily available than others matters. As Gamson and Modigliani explain, “[m]aking sense of the world requires an effort, and those tools that are developed, spotlighted, and made readily accessible have a higher probability of being

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used” (1989: 10). In modern society, newspapers and other media are important sites where “various social groups, institutions and ideologies struggle over the definition and construction of social reality” (Gurevitch and Levy 1985: 19). Newspapers thus provide an arena in which meanings are contested, making them a particularly good place to trace (struggles over) the construction of meanings of early diagnosis. News comes to the public in ‘sketchy dramatic capsules,’ leading to the fragmentation of meaning (Gamson et al. 1992). Although a collection of newspaper articles creates a kaleidoscopic picture of potential realities, symbols, and worldviews, this picture is limited to specific repertoires. It is not surprising that newspaper articles about early diagnostics for Alzheimer’s disease typically mobilize a vast array of arguments, moral appeals, topics, facts, and metaphors. In this sense, newspapers articles are part of a culture, and “each culture possesses a repertoire of symbols and world-views that its members can use as a tool-kit to attribute meaning to the various events and issues with which they are confronted” (Van Gorp 2012: 1275). Usually these constitutive elements are not encountered individually but are mobilized together. Such bundles of elements are what Gamson (1989) calls ‘interpretative packages.’ The interpretative packages on an issue, which Entman refers to as the “stock of commonly invokes frames” (1999: 53), are an indicator of the cultural repertoire we draw on to construct meanings, in this case of early diagnosis of Alzheimer’s disease (Gamson and Modigliani 1989). Interpretative packages in this article are analytical (re)constructions of the networks of relations in which early diagnosis is positioned and acquires its meaning. These packages are organized in a specific way. “At [their] core is a central organizing idea […] for making sense of relevant events, suggesting what is at issue” (Gamson 1989: 3). Two types of meaning-making devices are distinguished within interpretative packages: framing devices and reasoning devices. Framing devices are metaphors, exemplars, catchphrases, or visual images that are easily associated with a specific interpretative package (ibid. – referring to Gamson and Lash 1983). Reasoning devices guide how to think about an issue. They consist of a set of typical arguments, logical constructs, causal relations, and moral attributions. An interpretative package typically implies a range of positions rather than a single one, allowing for a degree of controversy (Gamson 1989). For example, when early diagnosis gains meaning as an intervention in health

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care practices, positions can differ on whether this is an improvement or not. Interpretative packages are not mere representations, but are also part and parcel of (re-)producing and changing practices in our society. They constitute what is defined as problematic and thus make some responses or actions more appropriate or more logical than others in specific situations. As such, they function as guides for doing and acting (Van den Brink 2010). No earlier studies exist on the construction of the meanings of early diagnosis in popular media, although some have analyzed images of dementia in news media. With the exception of Van Gorp (2012), these used preset frames to analyze the quality and type of reporting on dementia in newspaper articles. Clarke (2006) examines ‘the case of the missing person,’ where persons with Alzheimer’s disease are spoken for by others, such as caregivers, family members, medical experts, or scientists, wholly neglecting their own agency. She also shows that a medical model prevails in which cure is emphasized at the expense of prevention, long-term care accessibility, care programs, self-management strategies, and social support, which has the effect of reinforcing the power of medical experts, scientists, and pharmaceutical companies. Adelman and Karlawish (2003) conclude that media inadequately report on the uncertainties in the interpretation of research results and do not focus on the controversies over the allocation of resources. Other studies show that negative stereotypes of dementia persist and are spoken about in a language that exacerbates fear. These studies argue for the use of more positive language when reporting on Alzheimer’s disease as a way of reducing stigma (cf. Kirkman 2006; Doyle 2012; Van Gorp 2012; Clarke 2009). All of these studies aim to improve media coverage of Alzheimer’s disease, either through more adequate reporting on the outcomes of scientific research, using more positive language, and being more patient-centered, or by moving beyond the medical frame to include epidemiological, psychosocial, socio-structural, and ethical frames.

M ETHOD Using the LexisNexis database, we searched for articles that address both Alzheimer’s disease or dementia and early diagnosis or early diagnostic instruments in Dutch national newspapers (see appendix B for the search string used). The search was limited to articles published between January 1995 and January 2010. This yielded a total of 516 articles, 306 of which

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were about early diagnostics or signaling and dementia. Signaling refers to the recognition of the early symptoms of dementia. Early diagnostics figured as the central topic in exactly 100 articles, but was more often mobilized in relation to other topics. The first step was to go through the articles and explore the content. The content appeared to be rich and varied, yet it also contained recurring patterns. A first ordering was made according to similarities in topic and by making notes on possible cores of interpretive packages and repetitive patterns. In the second step, we made a preliminary list of the different cores and possible meaning-making devices present in the articles. We then used this list as we went back through the articles with the question which arguments, logical constructs, moral appeals, metaphors, and examples had been mobilized. During this process, the articles that had been labeled according to the initial list of interpretive cores were adjusted and extended where needed. One newspaper contains several statements and can draw on a number of different interpretative packages. So rather than labelling full articles as related to one package, we labelled statements that referred to early diagnostics of Alzheimer’s disease and decided whether these statements related to one of the core organizing ideas. If they did, we added the element to that cluster. If they did not, we added another core organizing idea. In the third step, the statements that were labeled with respect to a specific core were summarized. This allowed us to trace the clusters of elements related to each core and derive the reasoning and framing devices present throughout the newspaper articles. From this process, we generated a list of interpretative packages on early diagnostics for Alzheimer’s disease. From these packages, we could answer the research question on the meanings of early diagnostics and how these relate to conceptualizations of Alzheimer’s disease and the future.

I NTERPRETATIVE

PACKAGES In total, we encountered nine different interpretative packages in which the meanings of early diagnostics and Alzheimer’s disease and its future are constructed (see appendix A). In the following, we will describe the reasoning and framing devices of the interpretative packages. This overview is summarized in table 2 (Quotes are translated by the first author. The numbers refer to appendix C).

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Apocalyptic demography Reasoning devices: Within this interpretative package, early diagnostics appear as a step towards a solution to a huge socioeconomic problem. It is argued that early diagnostics for Alzheimer’s disease are needed for early treatment, efficient care provision, improved health care, and reasonable health care costs. Dementia is presented as an enormous challenge for society that comes with an aging population. The very success of our health care system to extend life expectancy (324) has now presumably turned into a huge and urgent problem, which is emphasized by qualifications such as “epidemic proportions” (557), “a national disaster” (554), a “silent tsunami” (380), “common disease number one” (471). This development is usually illustrated with numbers of increasing prevalence of dementia and an alarming increase in health care costs. From this problem definition, it is argued that the number of persons with Alzheimer’s disease should decrease in the future, either through medications that slow down or arrest disease progression at an early stage or through identifying risk factors for dementia and preventative measures. This would not only save many persons from developing Alzheimer’s disease, but also reduce the associated health care costs. The same problem definition points to the moral obligation of caring for persons with dementia in a well-organized and efficient health care system. And given the foreseen gap between increasing demand for care and the decreasing availability of care personnel, an early diagnosis is needed for a policy of selfreliance and informal caregiving. Framing devices: Aging society, socio-economical problem, prevalence numbers, epidemic, disaster, costs of health care. Scientific progress Reasoning devices: In this interpretative package, early diagnostic tests are presented as part of scientific progress towards a better understanding of the causes of Alzheimer’s disease, which will help to develop disease modifying treatments and to improve clinical diagnostic practice. Articles in this interpretative package report on (possible) new tests, such as genetic tests, blood tests, biobarcode assays, urine tests, MRI scans, PET scans, CSF analysis, SPECT, word tests, pupil dilation, and SPECT. Headlines consist of variations of ‘new test enables early diagnosis of Alzheimer’s disease.’ Articles make claims like “this is the first non-invasive

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test to diagnose AD” (560) or “this can lead to clues for the development of disease modifying treatment” (366). Alzheimer’s disease is understood as an accumulation of pathological mechanisms, and, within this context, a reliable biomarker test at an early stage of disease progression will provide “hope for breakthroughs to help millions of patients” (376). Such hope, in turn, is expressed in phrases such as “[t]here must be a breakthrough. We must understand how it works” (244). Early diagnosis of Alzheimer’s disease also figures as an example of the broader trend in scientific research towards predictive medicine (in contrast to curative medicine when the disease is already manifest). The argument is that the ‘genetic revolution’ has changed the logic of medicine. While medicine used to look at a disease with the aim of unravelling which molecules influence it, now it is possible to trace pathological mechanisms and find a suitable disease. “We have as it were medications, but are still looking for a disease that goes with that” (733). The aim of medicine is now to detect diseases on the molecular level as early as possible, a development which is “crucial for research on Alzheimer’s disease, Parkinson’s, and other brain diseases” (584). Framing devices: New test to early diagnose Alzheimer’s disease, breakthrough, revolution. Complex scientific puzzle Reasoning devices: In this interpretative package, Alzheimer’s disease appears as a complex condition with many unknowns. A variety of research methods are used to discover the inner workings of the mind, to understand the complex network of hundreds of billions of neurons and the multitude of connections between them. This complexity is what makes the disease fascinating. Early diagnostics such as biomarker tests and brain imaging appear as pieces of the big puzzle of unravelling Alzheimer’s disease, a puzzle which includes many different pieces, e.g. the condition of blood vessels, silent cerebral infarctions, micro bleeds, changed brain activity, blood pressure, insulin growth factor, statins, diabetes, depression, migraine, hereditary factors, lifestyle, smoking, education, and social life. While such factors can be informative for risks at a population level, they are understood to be limited in their predictive value for individuals. Framing devices: Puzzle, complexity of the brain, mystery, unraveling.

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Technological progress Reasoning devices: In this interpretative package, early diagnostics are presented as an iconic example of technological progress. The development of molecular imaging techniques such as (f)MRI, MEG, SPECT, and PET is said to trace possible deviations in the brain that are related to Alzheimer’s disease. This diagnostic route is described as providing hope: “A better resolution is worth gold in this world” (404). Big market players in imaging technologies such as Siemens, General Electric, and Philips Medical Systems present themselves as frontrunners in medical imaging technologies, and newspapers report on their enormous investments. Medical centers also proudly present their share in technological progress, such as purchasing the newest 7 Tesla MRI scanners. “Rotterdam is the first in the world to have a new MRI scanner for early detection of brain conditions” (457), and “[t]he MRI scanner, a wonder machine that secures brain activity in great detail, and has caused a revolution in brain sciences in the last decennia” (352). Framing devices: Superscanner, unique in the world, the next step. Economic competitiveness Reasoning devices: Many articles present Alzheimer’s disease and early diagnostics as a market opportunity for companies and a driver of national economies in the same way the unravelling of the human genome boosted the pharmaceutical industry and the biotech sector. The EU and the Dutch government are both investing in molecular imaging research and refer to ‘the knowledge economy’ and ‘innovation capacity.’ Large innovation programs, such as the Center for Translational and Molecular Medicine and TI Pharma (biomarker research) are accompanied by great promises for the Dutch economy. The following quote illustrates this reasoning device: The Netherlands has chosen [to invest in] the life sciences. This will give a boost to the wellbeing and welfare of the Dutch people. […] TI Pharma not only contributes to increasing the quality of life, but also to strengthening the knowledge economy. […] With these kinds of projects, the Netherlands takes the lead in becoming the world’s most competitive knowledge economy. (376)

Medical imaging technologies are thus a ‘growth market,’ but so are therapies, herbs, supplements, brain training courses, exercise programs, and “whatever is for sale in the ‘market of forgetfulness’” (340).

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Framing devices: Innovation, knowledge economy, market, economic growth. Health care provision Reasoning devices: Central in this interpretative package is the question of how to provide health care to elderly persons with Alzheimer’s disease in a decent and affordable way. Early diagnosis appears as a (future) ingredient of good health care that will be provided by memory clinics, geriatric clinics, or general practitioners. An early diagnosis will allow patients and families to prepare more effectively: “The longer patients can manage at home with the help of family and friends, the better it is” (387). In addition, budget cuts in health care and the increased burden on informal care are both a cause of concern. As one angry reader wrote in a letter to the editor, “[i]t is shameful that in a rich country like the Netherlands, care for dementia proves insufficient. Shameful and unloving!” (398) Framing devices: Integral care, stay at home longer, the earlier the diagnosis the better, informal care, nursing homes, timely organization of care and support. Successful aging Reasoning devices: The big concern in this interpretative package is how to avoid or delay memory problems and dementia. Here early diagnostics become part of the project of ‘successful aging,’ which is tied to changing expectations about life, changing social norms, and government policies towards self-reliance. Additionally, successful aging is treated as the responsibility of the aging person: “You can do something yourself to gain 10 more healthy years” (344). Newspaper articles report on the risk factors for dementia and the possibilities of preventing them. Generally, “all risk factors for a heart attack (high blood pressure, high cholesterol, obesity, and smoking) are also risk factors for dementia in old age” (549). The advice to age healthfully, including preserving one’s cognitive functions and memory, is to keep an active and healthy lifestyle. “Remaining active is good for everything: memory functions, balance, self-confidence, and your mind” (344). Individual responsibility is reinforced by an emphasis on selfreliance. As one article expresses it, “[t]he message is clear: The elderly will have to fend for themselves” (386). This mentality of successful aging and the fear of being ‘unsuccessful’ feeds an entire market of brain training

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programs, physical exercise, hormonal treatments for women in menopause, and food supplements. Framing devices: Successful aging, healthy aging, active aging, vitality. Fear, worry, and approaching mischief Reasoning devices: This interpretative package is about the fear of growing old, becoming less vital, and eventually getting Alzheimer’s: “The whole public perception of dementia is negative” (484), “a shriveled brain and dying neurons; that is what awaits us with increasing age. Is there any way to prevent this chimera?” (651) In addition, the prospect of becoming an informal caregiver and experiencing the decline of a loved one is a cause of fear and worry. An illustrative quote of this notion is: “Dementia is a horrible disease and a cruel way to die” (549). Persons who are developing dementia as well as general practitioners are said to often ignore the signs of dementia as long as possible because “[f]ear, shame, and a negative perception play a big role. Dementia still remains a taboo” (387). Memory decline is considered as one of the most feared ailments of old age. Some visitors of memory clinics who complain about their memory do not have symptoms of dementia but are fearful and depressed (723, 708, 651). Persons in this group, known as the ‘worried well,’ have no rest until it is established that they do not have dementia (595). The Dutch Alzheimer’s Association started a campaign called ‘worries about Alzheimer’s to explain the difference between normal forgetfulness and dementia, how a diagnosis is conducted, and the benefits of an early diagnosis. Framing devices: Worry, fear, chimera, horrible disease, worried well. Good life and death Reasoning devices: This interpretative package revolves around what people value in life. A diagnosis of dementia changes the life prospects for the person diagnosed as well as for their close relatives. The idea of a ‘good life’ and one’s choices in life and on death are related to the rise of predictive and early diagnostic tests for Alzheimer’s disease. The central question is: (When) would you like to know? The unnecessary fear for ‘first signals’ needs to be balanced with the relief of having certainty about ‘what is going on.’ The notion of a ‘good life’ also relates to the idea of a ‘good death’ and end-of-life decisions. This discussion has evolved over the years. Since

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1999, euthanasia has been legally permissible in the case of dementia in the Netherlands. Many persons with dementia welcome this possibility and defend their autonomy. Others however point to the moral obligations of the state to organize the health care system in a reassuring way and to promote a societal climate that does not exclude persons with dementia. In this view, the current increase in possibilities of and requests for euthanasia in the case of dementia is considered as the moral bankruptcy of society. While it is legally possible to request to be euthanized in early-stage dementia, many general practitioners do not cooperate, leading to situations in which persons try to organize their own deaths, which is often accompanied by all the unwanted consequences. This discussion has changed with medical-technological advances in diagnosing Alzheimer’s disease earlier and with higher certainty. Because dementia seemingly has become less of a taboo and expectations have been raised about being able to give a diagnosis at an earlier stage, it is predicted that more people will request euthanasia. As one article puts it: “If you start developing dementia, you should sound the alarm in time because that is the moment you can still make a request for death. If you do not do it then, you are sentenced for life” (395). Framing devices: Personal choice, autonomy, end of life, right to know, right not to know, civilization. After the delineation of these nine interpretative packages in newspaper articles, we now return to the question of the meanings of early diagnostics and how they are intertwined with specific understandings of Alzheimer’s disease and its future. This is summarized in table 1. Table 1. Meanings of early diagnostics for Alzheimer’s disease, related to meanings of Alzheimer’s disease and a likely or needed future Interpretative package

Meaning of early diagnostics

Meaning of Alzheimer’s disease

Likely or needed future

Aging society

Step towards a solution in terms of cure and care; improving health care and decreasing health care costs

Huge socioeconomic issue

A national disaster to be averted; decreasing number of persons with dementia; reducing health care costs by staying at home longer

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Scientific progress

Increase knowledge on Alzheimer’s disease; a step towards a medical solution or prevention; imaging techniques and biomarker tests push the boundaries of brain and neuroscience

A biomedical condition; a condition of the brain

Increasing knowledge, earlier and better diagnosis and medical intervention

Scientific complex puzzle

A step in trying to unravel the complex puzzle of Alzheimer’s disease; increased understanding of mechanisms involved

A complex condition which is the outcome of many accumulating mechanisms, biological, personal, and social

Unraveling the mysteries of the brain and finding pieces of the puzzle for increased understanding and improved diagnosis and intervention

Technological progress

New technologies leading to fundamental changes in health care towards predictive medicine; tracing underlying mechanisms and predicting the development of AD in an individual or the risk profile of a person

Neurodegenerative disease, the underlying mechanisms of which accumulate into dementia; a huge application area for new technologies

More and more detailed imaging technologies; molecular and personalized predictive medicine at an early stage of the disease

Economic competiveness

Product in the Huge market or health care market application area

High tech, knowledge-intensive industry; preventative medicine

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Development of innovative regions with strong knowledge economy Health care provision

Improvements in accuracy of the diagnostic process at an earlier stage as the start of a well-organized, suitable care trajectory

Bio-psychosocial phenomenon; a condition that can be detected in the brain, a condition of a person, changed prospect on life, changing relationship between relatives, a condition requiring organization of integrated care

Improved patient care and guidance; impoverishment of public health care provision

Successful aging

Gaining knowledge about risk factors of dementia and enabling preventative measures; the end of successful aging

A feared condition due to a lifelong process, to be avoided through personal lifestyle and health choices

Personal future: stay vital and healthy in old age; becoming responsible for your own aging process; medical future: Prevent and delay dementia

Fear and worry about approaching mischief

A doomsday scenario becoming reality; patient information providing relief and clarity

A horrible and cruel disease

Personal: Deterioration of the body and brain; health care: Impoverished care; medicine: Provide comfort or clarity at stage of subjective complaints

Good life and death

Verdict enabling a Life changing self-chosen death condition when faced with dementia

Improving possibilities and guidance for euthanasia for early stage dementia

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C ONCLUSIONS : M ULTIPLICITY IN ‘ POPULARIZING ’ EARLY DIAGNOSIS OF A LZHEIMER ’ S DISEASE While the quest to identify Alzheimer’s disease at increasingly early stages is mainly a medical endeavor, the prospect of early diagnostics of Alzheimer’s disease extends beyond the laboratory and gains meaning in a variety of social settings. Newspaper articles allowed us to trace the different meanings of early diagnostics and dementia and how they are constituted through a number of frames. We have delineated nine interpretative packages that, taken together, constitute the cultural repertoire of early diagnostics for Alzheimer’s disease as expressed in newspaper articles. We studied the reasoning and framing devices of ‘interpretative packages’ that allow the construction of a multitude of meanings. This analysis shows through which relations the early diagnosis of Alzheimer’s disease is made ‘meaningful,’ and, at the same time, how early diagnosis (re-)produces, reinforces, or changes ways of dealing with Alzheimer’s disease. Our analysis indeed shows that the popularized meaning of early diagnosis in newspaper articles goes beyond a biomedical framing. Early diagnosis of Alzheimer’s disease gains meaning in an array of interpretative packages that we identified as ‘aging society,’ ‘scientific progress,’ ‘scientific puzzle solving,’ ‘technological progress,’ ‘economic competitiveness,’ ‘health care provision,’ ‘successful aging,’ ‘fear and worry about dementia,’ and ‘good life and death.’ Earlier framing studies on dementia have shown the dominance of a biomedical approach. This study, on the other hand, shows how an innovation of a biomedical nature gains meaning through a multitude of framings of dementia. Alongside the framing of dementia as a biomedical problem and a (biopsycho-social) condition, dementia is framed as an important event in a person’s life course, a generally feared condition that should be averted, a market opportunity for new technological innovations, and a socioeconomic problem and a challenge for the health care system due to the growing number of persons with the disease. The interpretative packages highlight different societal aspects of early diagnostics of Alzheimer’s disease and the ways they create and change the social world as well as different valuations of these changes. Early diagnosis from a medical, economic, and technological framing appears as a positive development that will increase knowledge about dementia and improve diagnosis, medical interventions, and preventative strategies. Within a

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health care framing, early diagnosis is ambivalent because it promises to improve patient care through timely care and support while, at the same time, health care policies emphasize self-reliance, informal caregiving, and staying at home for as long as possible. This may impoverish the care system. Thus, it is questioned whether formal care and support will be available and accessible after a person has received an early diagnosis. The packages on successful aging and fear and worry highlight both an increased awareness of possible early signs of dementia and a desire to delay or prevent their onset. These packages tie in with the experience of aging and the desire to delay senescence (the process of decline with age). On the one hand, this shows the hope of preventing dementia through personal lifestyle adjustments and, on the other, an increasing anxiety about the first signs of dementia. The package on good life and death stages questions about how to draw a balance between reducing unnecessary fear of ‘first signals’ and a desire to know ‘what is going on’ when dementia begins to manifest itself, what constitutes a good life at old age with dementia, and how and when to opt for a self-chosen death. The euthanasia issue is precarious because it is intertwined with changing expectations of (successful) aging and fear about an impoverished health care system. Four things stand out when we relate our findings to earlier articles on representations of dementia in news media. The first is that while earlier articles stress the dominance of medical conceptualizations in newspaper articles (Van Gorp 2012), this analysis shows that medical conceptualizations are discussed through a multitude of framing packages. Secondly, earlier articles have shown that news media emphasize the negative images of dementia (cf. Kirkman 2006; Doyle 2012; Van Gorp 2012; Clarke 2006). This view is confirmed in this analysis. This critique however was also raised in some newspaper articles, which is indicative of a societal awareness and reflexivity on representations of dementia. Thirdly, our analysis confirms ‘the case of the missing person.’ Persons with Alzheimer’s disease figure as objects of concern – spoken for by scientists, policymakers, informal caregivers, and so on – and not as subjects (Clarke 2006). Contrary to what Clarke claimed, we found that issues on long-term care accessibility, care programs, prevention and the good life are being addressed in news media. Our framing analysis shows that the repertoire in which early diagnostics for Alzheimer’s disease is positioned and acquires its meaning is diverse and guides thinking in a range of directions. It makes clear that

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the social construction of early diagnosis of Alzheimer’s disease is guided by both reasoning devices that drive this development forward as well as reasoning devices that pinpoint possible problematic situations.

R EFERENCES Adelman, Eric E./Karlawish, Jason H.T. (2003): “Ignoring the Controversies: Newspaper Reports on Alzheimer’s Disease Treatment.” In: Journal of the American Geriatrics Society 51/12, pp. 1821-1822. Clarke, Juanne N. (2006): “The Case of the Missing Person: Alzheimer’s Disease in Mass Print Magazines 1991-2001.” In: Health Communication 19/3, pp. 269-276. Downs, Murna/Clare, Linda/Mackenzie, Jenny (2006): “Understandings of Dementia: Explanatory Models and their Implications for the Person with Dementia and Therapeutic Effort.” In: Julian C. Hughes/Stephen J. Louw/Steven R. Sabat (eds.), Dementia, Mind, Meaning, and the Person, Oxford: Oxford University, pp. 235-258. Doyle, Colleen J./Dunt, David R./Dare, Andrew/Day, Susan/Wijesundara, Badrika S. (2012): “Media Reports on Dementia: Quality and Type of Messages in Australian Media.” In: Australasian Journal on Ageing 31/2, pp. 96-101. Entman, Robert M. (1993): “Framing: Toward Clarification of a Fractured Paradigm.” In: Journal of Communication 43/4, pp. 51-58. European Union Joint Programme Neurodegenerative Disease Research (2012): JPND Research Strategy: Tackling the Challenge of Alzheimer’s and Other Neurodegenerative Diseases in Europe, Swindon and London: Medical Research Council. Gamson, William A./Lash, Catherine E. (1983): “Political Culture of Welfare Policy.” In: Shimon E. Spiro/Ephraim Yuchtman-Yaar (eds.), Evaluating the Welfare State, New York: Academic Press, pp. 397-415. --- /Modigliani, Andre (1989): “Media Discourse and Public Opinion on Nuclear Power: A Constructionist Approach.” In: American Journal of Sociology 95/1, pp. 1-37. --- /Croteau, David/Hoynes, William/Sasson, Theodore (1992): “Media Images and the Social Construction of Reality.” In: Annual Review of Sociology 18, pp. 373-393.

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Gurevitch, Michael/Levy, Mark R. (1985): Mass Communication Review Yearbook 5, Beverly Hills: Sage. Innes, Anthea (2009): Dementia Studies, London: Sage. --- /Manthorpe, Jill (2013): “Developing Theoretical Understandings of Dementia and their Application to Dementia Care Policy in the UK.” In: Dementia 12/6, pp. 682-696. Jorgensen, Marianne/Philips, Louise J. (2002): Discourse Analysis as Theory and Method, London: Sage. Kirkman, Allison M. (2006): “Dementia in the News: The Media Coverage of Alzheimer’s Disease.” In: Australasian Journal on Ageing 25/2, pp. 74-79. Kitwood, Tom (1997): Dementia Reconsidered: The Person Comes First, Buckingham: Open University. --- (1990): “The Dialectics of Dementia: With Particular Reference to Alzheimer’s Disease.” In: Ageing and Society 10/2, pp. 177-196. Lyman, Karen A. (1989): “Bringing the Social Back In: A Critique of the Biomedicalization of Dementia.” In: Gerontologist 29/5, pp. 597-605. Moser, Ingunn (2008): “Making Alzheimer’s Disease Matter: Enacting, Interfering and Doing Politics of Nature.” In: Geoforum 39/1, pp. 98110. --- (2011): “Dementia and the Limits to Life: Anthropological Sensibilities, STS Interferences, and Possibilities for Action in Care.” In: Science, Technology and Human Values 36/5, pp. 704-722. Mueller, Susanne G./Weiner, Michael W./Thal, Leon J./Petersen, Ronald C./Jack, Clifford R./Jagust, William/Trojanowski, John Q./Toga, Arthur W./Beckett, Laurel (2005): “Ways Toward an Early Diagnosis in Alzheimer’s Disease: The Alzheimer’s Disease Neuroimaging Initiative (ADNI).” In: Alzheimer’s & Dementia 1/1, pp. 55-66. Van den Brink, Margo (2010): Rijkswaterstaat on the Horns of a Dilemma, Delft: Eburon. Van Gorp, Baldwin (2007): “The Constructionist Approach to Framing: Bringing Culture Back In.” In: Journal of Communication 57/1, pp. 6078. --- /Vercruysse, Tom (2012): “Frames and Counter-Frames Giving Meaning to Dementia: A Framing Analysis of Media Content.” In: Social Science & Medicine 74/8, pp. 1274-1281. Weick, Karl E. (1995): Sensemaking in Organizations, London: Sage.

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APPENDIX A: N UMBER

OF ARTICLES RELATED TO INTERPRETATIVE PACKAGES

70 60 50 40 30 20 10 0

19951999 20002004

APPENDIX B: S EARCH

STRING USED IN L EXIS N EXIS (((((Alzheimer! OR dement!) AND (Biomarker! OR bloedtest! OR hersenvocht! OR CSF! OR lumbaal! OR ruggenmerg! OR ruggenprik! OR vroegdiagn! OR “vroege diagn!” OR “vroegsign!” OR “vroege sign!” OR MRI! OR “PET scan!” OR “vroege opsporing” OR “voorspell!” OR “beeldvormende techn!” OR beelddiagn! OR "vroegtijdige diagn!" OR “moleculaire diagn!” OR “molecular imag!” OR SPECT OR marker! OR detect!)))))

APPENDIX C De Telegraaf: (398) 1/3/2007 NRC Handelsblad: (244) 11/7/2009; (340) 8/3/2008; (344) 16/2/2008; (352) 25/1/2008; (386) 30/6/2007; (457) 12/11/2005; (484) 20/11/2004; (549) 2/11/2002; (584) 2/6/2001; (723) 10/10/1996; (733) 8/3/1996 Trouw: (387) 5/6/2007; (395) 22/3/2007; (554) 27/9/2002 Het Financieel Dagblad: (376) 1/10/2007; (471) 7/5/2005

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Het Parool: (324) 24/5/2008 Algemeen Dagblad: (366) 3/12/2007; (380) 17/9/2007; (651) 22/10/1999; (708) 2/5/1997 De Volkskrant: (404) 27/1/2007; (557) 31/8/2002; (560) 22/6/2002; (595) 30/1/2001

Respect for autonomy? The contribution of popular magazines to the public understanding of dementia care S ANNA I NTHORN & J ULIA I NTHORN

Representations of dementia in popular media have the potential to raise public awareness of the interests of persons living with dementia. But these representations can also help to normalize approaches to dementia that advance the wellbeing of dementia sufferers. Much of the existing research on media representations of dementia focuses on news media (cf. Kirkman 2006; Kessler and Schwender 2012; Clarke 2006), art house cinema, and biopics (cf. Cohen-Shalev and Marcus 2012; Wearing 2013). In this paper, we explore the potential of representations in popular magazines to improve the respect for autonomy of those living with dementia. Popular magazines not only serve as a source of information about health (cf. Radimer and Philip 1995); their form makes them particularly well-suited for depicting the lived experience of dementia. Bonner and McKay’s work on representations of cancer and cancer patients in women’s magazines shows that magazines give voice to personal experiences and represent relationships of care (cf. McKay and Bonner 2004; Bonner and McKay 2000). They offer a space for the expression of emotional responses to illness. In this paper, we ask how popular magazines contribute to the public understanding of dementia through their representation of decision-making in response to or anticipation of dementia. In our analysis, we are mindful of the conventions of popular magazines

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and pay particular attention to the ways in which they offer a space for the emotional experience of decision-making.

MEDIA REPRESENTATIONS , AUTONOMY, AND WELLBEING Our analysis begins with the argument that media representations of any social group carry implications for the ways in which its members are perceived and, consequently, treated in the public and private spheres (cf. Healey and Ross 2002; Jermyn 2013). Media representations can also carry implications for how members of a group come to perceive themselves. Such representations are not mere mirror images of social groups: They are constructions of social realities which can naturalize ways of understanding members of social groups such as persons with dementia. The symptoms that accompany dementia, especially those manifested in the advanced stages of the condition, such as loss of memory and diminished bodily control, are the symptoms that are most often associated with a lack of self-management, a loss of personhood, and the incapacity to exercise autonomy (Herskovits 1995). Public understanding of dementia remains low (“Dementia: A Public Health Priority” 2012), and stigmatization is a common experience for affected persons. Dementia sufferers might rate their quality of life as good, especially in the early stages of the disease. Nevertheless, they are often perceived and treated as lost causes and ‘almost dead’ (Katsuo 2005). The association of dementia with the loss of personhood and autonomy has been found to have profound implications for the psycho-social wellbeing and quality of life of sufferers as well as their caregivers (Milne 2010: 228). Persons with dementia often experience feelings of low self-esteem and isolation. Persons with dementia as well as their caregivers sometimes even opt for self-isolation and seek neither help nor access to the resources available to them (ibid.). Kirmann (2006) and Van Gorp and Vercuysse (2012) highlight how the media contribute to the social marginalization of persons with the disease by constructing dementia as a ‘mind robber’ and a threat to autonomy. We share their concern with the ethics of the media. We see a connection between the marginalization of a group at the social level and how it is represented in the media. At the same time, media representations of dementia also have implications for the ethical dilemmas individuals and their families face when making decisions in their everyday lives. The question of how people should relate to each other at the interpersonal and private

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levels is central to dementia care. In the UK for example, some 6.4 million people provide informal and unpaid care (“Later life in the United Kingdom” 2013). Because of their emphasis on the personal and on emotions and relationships, popular magazines have the potential to describe models of dementia care that support the wellbeing of persons with dementia in the everyday context of care. Our particular interest is in the representation of autonomy, which is perhaps the most fundamental ethical issue in dementia care. Unable to demonstrate the capacities assumed to be essential for the ability to take autonomous actions, people with dementia often find themselves excluded from decision-making processes (cf. O’Connor and Purves 2009). While the degree to which they require support varies greatly, the nature of their condition raises the question of their autonomy and, in particular, their ability to make decisions. Involvement in decision-making and in the sharing of opinions provides a feeling of agency and is a key contributor to a person’s sense of wellbeing (cf. Kruse 2005). This argument is found in the wider debate on autonomy in medical ethics. Here, the work of Beauchamp and Childress (2013) and their concept of ‘personal autonomy’ have been particularly influential. Building on previous editions of their classic work Principles of Biomedical Ethics, first published in 1979, they strongly associate autonomy with non-interference: At a minimum, personal autonomy encompasses self-rule that is free from both controlling interference by others and limitations that prevent meaningful choice, such as inadequate understanding. (Beauchamp and Childress 2013: 101)

However, a concept of autonomy that is mainly associated with the capacity to understand complex information thoroughly and to assess the risks and benefits of different choices rationally places an expectation on persons to display these cognitive capacities. Therefore, such an understanding has been widely criticized for being too narrow and not capturing the everyday realities of decision-making processes. Critics such as O’Neill (2002) highlight the importance of relationships of trust for decision-making. Like everybody else, people with dementia exist in social relations and are thus likely to maintain their self-determination and independence in part by relying on others (cf. Weidinger 2014). In response, Mackenzie and Stolljar (2000) argue for a concept of ‘relational autonomy’ that acknowledges how decisions are made within social relationships and specific contexts. Relational autonomy suggests that autonomy can be supported if others respect,

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help to identify, and interpret the wishes of persons with dementia, for example by considering their personal and social values (cf. Nuffield Council 2009: 26; Wetzstein 2012). This understanding of autonomy recognizes persons in their present condition. It validates their experiences and perspectives and facilitates the communication of their wishes and interests on their own terms (cf. Brooker 2004). In practice, this means using the personality and life experiences of persons with dementia to contextualize and understand their ways of communicating their wishes and preferences. This highlights how autonomous decisions can be made within a framework of supportive relationships and recognition of mutual responsibilities, for example between family members or caregivers and persons with dementia. In this vein, Quante (2002) differentiates between those influences that reduce autonomy and those that provide a basis for it, such as education and mutual respect (ibid.). It is important to note that this understanding of autonomy does not require persons with dementia to demonstrate their autonomy in any way. Instead, it emphasizes the need to recognize the contexts that shape the implementation of autonomy, including relationships that may or may not strengthen autonomy. But context here also includes stages of dementia that limit the ways in which someone can or wishes to be involved in decision-making. For this reason, critics of Beauchamp and Childress’ approach often highlight the gradual and situated nature of decision-making (cf. O’Neill 2002). The debate about autonomy in medical ethics also shows how, depending on the stage of dementia a person is in, a balance must be struck between the general safety and wellbeing of a person (beneficence) and a person’s wishes and preferences (autonomy) (cf. Landau et al. 2011; Beauchamp and Childress 2013). Only ensuring the wellbeing of persons with dementia can entail the failure to respect their autonomy in the praxis of care. This happens for example when caregivers do not attempt to involve persons with dementia in decision-making despite their intention of doing what is best for them. Caregivers need to balance among potentially conflicting principles or values, something that can be achieved by involving persons with dementia (cf. Nuffield Council 2009). Furthermore, actively refraining from decision-making itself can be understood as an act of autonomy. Thus, persons with dementia can be understood as acting autonomously when they delegate others to make decisions for them or choose not

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to participate in the decision-making at all (ibid.: 136f.).1 For example, a person with dementia may decide to give someone they trust power of attorney. In this context, a number of examples can be seen as advancing the key characteristics of autonomy in decision-making: joint decisionmaking; people with dementia deciding to let others make decisions for them, caregivers attempting to balance the wishes and values of a person with dementia against their safety and autonomy, caregivers, and people with dementia making decisions free from external influence.

M ETHODS This is an interdisciplinary paper. From media studies, we take the argument that popular culture is of socio-political significance, with the potential to shape public understandings of persons with dementia. We also adopt the premise that analyses of media texts need to be mindful of the conventions that underpin them. From medical ethics, we take the argument that respect for autonomy is central to the wellbeing of people with dementia at the private and societal levels. The challenge for our interdisciplinary approach is how to apply abstract theoretical concepts from medical ethics to empirical analysis: When looking at an article in a popular magazine about dementia, how can we tell if it really represents autonomy? Moreover, how can we take into account that we are looking at a popular medium rather than a philosophical text or a guide to ethical approaches in dementia care (cf. Nuffield Council 2009)? Magazines are likely to use different registers and styles and we cannot expect them to draw on the same philosophic debates. We therefore need to remain open to the possibility that such magazines conceptualize autonomy in ways that do not map neatly onto approaches used in medical ethics. For this reason, we opted for a combined deductive and inductive approach. As our theoretical starting point, we take the argument that autonomy is expressed in decision-making processes, an idea that is firmly established in medical ethics. For example, it underpins the notion of informed consent (Beauchamp and Childress 2013: 120ff.). This argument guided our initial coding process in which we decided whether an article featured a decisionmaking process and, if so, asked what the decision was about. We then conducted a second round of coding to trace possible differences in the

1

For a theoretical foundation see also Dworkin 1988.

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ways in which autonomy in decision making was represented. To make our approach more fine-grained, we drew on two concepts of autonomy, personal and relational autonomy, which are the most prominent in the literature on medical ethics discussed above. To explore whether popular magazines draw on key principles of personal autonomy, we asked whether in descriptions of decision-making persons with dementia are shown to be making the decision free from external influence from family members, medical experts, or others. We also asked who was making the decisions in cases in which the person with dementia was not. To examine in what ways such magazines draw on concepts of relational autonomy, we asked several questions. Relational autonomy recognizes that autonomy is realized in relationships and its implementation is context-dependent. Context includes the different stages of dementia, but also other private and public factors such as family dynamics and government policy. We therefore asked whether there was a suggestion that efforts are or should be made to identify and respect the wishes of the person with dementia in descriptions of decision-making and whether the implementation of relational autonomy is conceptualized differently in different stages of the condition. Together, these questions helped us establish some of the ways in which popular magazines conceptualize the autonomy of persons with dementia. We used these questions as a loose structure for guiding our analysis; however they did not predetermine the extent to which we considered a theme to be significant. We wanted to be able to pick up on the potentially wide range of themes that emerged across our sample. For instance, we wanted to explore whether popular magazines showed examples of how respect for autonomy is negotiated in practice, including solving the tension between beneficence and autonomy. Furthermore, we wanted to acknowledge approaches to dementia care which did not perfectly match the definition of autonomy used in medical ethics but nevertheless suggest that caregivers are motivated by the wish to provide good care. Our coding process therefore included a first reading and re-reading of data, followed by the systematic coding of features which emerged from the first readings, and finally the collation of the codes into potential themes. Another challenge we faced was the selection of our sample. We focused on 50 articles published in the British magazines Saga Magazine,

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Yours, and Choice between 1 January and 31 August 2013.2 All articles either explicitly refer to dementia or address issues of care in older age that can be related to dementia, such as the choice of a care home or legal and financial planning. Saga Magazine is the UK’s best selling monthly subscription magazine with a circulation of 553.734 and 1.335 million readers (“All you need to know about” 2013). The magazine is owned by the Saga Group, a company known for its package holidays for persons over 50. Choice is a monthly magazine with a circulation of 44.000 (“Choice” n.d.). Yours is a biweekly magazine with a circulation of 280.804 (“About Yours Magazine” 2014). All three magazines are aimed at readers in their 50s and above. All cover a wide range of topics, including health, travel, and beauty and regularly feature columns on issues of care as well as financial and legal planning. In our sample, we included all articles, editorials, letters to the editor, and advertorials (which are similar to editorials in structure and style, but advertise a specific product or service). In our sample, we found 30 articles that explicitly refer to decisionmaking in the context of dementia care. Yet, we also found two articles that refer only to ‘loss of capacity,’ a term which reflects the loss of mental capacity, but cannot be associated exclusively with dementia. We therefore included these articles in our sample but treated them as a separate category. We also found 18 articles that address the issue of older people needing help more generally, a condition which applies to people with dementia even if they are not explicitly mentioned. While the first two categories are distinct and easily identifiable, the third has more porous boundaries. Because our main interest is in representations of dementia, we only included the 18 articles that unambiguously refer to older people needing assistance. In order to see which conceptualizations are specific to the articles on dementia, we compared results among all three categories.

F INDINGS Care and health are the most frequently appearing topics associated with decision-making across our sample. This focus is not particular to articles dealing with dementia, but is found in those that refer to the need of assistance in older age more generally (see table 1). Similarly, decisions about financial planning and the communication of one’s wishes, for example by 2

Total sample population: eight issues of Choice, twelve issues of Yours and eight issues of Saga Magazine.

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making a will, do not receive more attention in articles featuring decisionmaking and dementia than in articles that refer to decision-making and older age or loss of capacity. Table 1. Foci of decisions found in articles Subject

Dementia

Loss of capacity

In need of assistance in old age

Total

Care

14

0

6

20

Health and health promotion

8

0

8

16

Communicating wishes

4

2

1

7

Financial planning

3

0

3

6

Other

1

0

0

1

Total

30

2

18

50

Nevertheless, there are important differences in the ways in which autonomy is conceptualized within the different categories of articles. Independence and decision-making The importance of autonomous decision-making was a key theme in the contexts of preparing for a possible future of living with dementia and the experience of coping with the condition. In many cases, readers are directly addressed or present themselves (in letters) as autonomous agents who make informed decisions about their future or the future of a relative. Letters to the editor, for example, constitute a space in the magazines where readers come across as autonomous individuals. In the example below, a reader writes to ask about money-saving options: My wife and I have considered giving Lasting Power of Attorney (LPA) to our daughter, so that if ever we were not able to make decisions about our own finances or welfare she could make them for us. We have been shocked at how much it seems to cost to get it done professionally. Can we save money by doing it ourselves, or are there any other options? (Saga Magazine, April 2013: 103)

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While the reply to this reader suggests that the range of options is rather limited, it does not undermine the assumption that it is up to readers to make decisions: There isn’t really an alternative if you want someone you trust to manage your affairs when you no longer can. If you don’t have LPAs in place, an application will be made to the Court of Protection to appoint someone to make decisions on your behalf. (Saga Magazine, April 2013: 103)

In examples like this, autonomous agents are often cast in the role of consumers who select a product to suit their needs. As the following example illustrates, while the benefits of making a particular decision are emphasized, readers are addressed as autonomous agents who make decisions about their future: Serious illness can hit at any time, plan ahead now to ease the potential burden on loved ones. There are some 800,000 people in the UK living with dementia – a figure that is expected to pass the one million mark by the end of 2015. (Yours, March 19–April 1, 2013: 60-61)

The autonomous agent is not only featured in articles about legal and financial planning but also in the context of health and health promotion. Regular columns such as ‘Fit for Life’ (Saga Magazine) or ‘Health and Vitality’ (Yours) offer health advice and often assert the idea that one ought to look after one’s body. While this unquestioned assumption in itself poses some limits to autonomous decision-making, readers are positioned in the role of active agents who are invited to choose from a range of options and respond to the information that is available to them: New US research also shows that keeping your brain active by reading, writing, doing crosswords or Sudoku can help delay memory loss and reduce the risk of Alzheimer’s. (Yours, April 16–29, 2013: 51)

While the notion of personal autonomy has a clear presence in our sample, it is important to note that persons who feature as autonomous agents are rarely identified as having been diagnosed with dementia or showing any symptoms of the disease. The articles are written from the perspective that readers are preparing for the eventuality of getting dementia. Across the three magazines, there is hardly any suggestion – implicit or explicit – that persons with dementia can be understood as autonomous agents who make decisions without external influence. We found just two examples of persons with dementia acting autonomously in the sample. In Choice magazine’s ‘Care’ column, persons with dementia are assumed to

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be active agents. Choice magazine also featured an article that includes the normative assumption that people who need care, including persons with dementia, have a right to be regarded as autonomous: In the first instance, anyone who feels they need help with everyday living because of health, frailty or dementia should request assessment of their care and support needs from their local Adult Social Services Department […] [I]n carrying out a Needs Assessment […] the individual concerned should be fully involved and able to state their preferences and choices. (Choice, May 2013: 68)

Autonomy and beneficence: Solutions in the context of the family While the last example stresses the importance of involving people with dementia in decision-making processes, notably it does so in reference to social care initiatives supported by the government. In contrast, most of the articles in our sample refer to informal care provided by family members at home. In this context, the diagnosis of dementia features as a turning point at which persons move from a state of personal autonomy to a state of dependency: I have many blood relatives who developed dementia and [I] worry that if I develop it, the burden will fall on my children. If they knew it was coming they would make plans for my care. I have my Will and Lasting Power of Attorney set up but there seems little else I can do. (Yours, August 6–19, 2013: 32)

Magazines – particularly women’s magazines – are a media form in which personal relationships feature prominently. It is not surprising, then, that we found many articles that focused on the personal experience of dementia, especially at the family level. In our sample, family members were the ones most often featured in the role of caregivers. Under the heading of ‘Sharing the Caring,’ Yours even runs a regular column on their experience, with articles celebrating ‘carers of the month’ and ‘star letters’ from readers who are rewarded with a £50 Bupa (a private health company) voucher. Across our sample, there was a strong emphasis on the moral obligation to provide good care. My husband has mixed dementia and I could easily run away, but of course I won’t. I see friends doing what I want to do and feel resentful at how my life has turned out. Then I feel guilty and selfish. (Yours, April 2–15, 2013: 110-111)

In the end, the wife who confessed her feelings of guilt and selfishness does not question her moral obligation to look after her husband.

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The persons who are represented as making key decisions about the provision of care are the caregivers, as the following example shows: I refuse to let Mike sit in front of daytime TV so we are out doing things almost every day. I think it is important to keep going. (Yours January 8–21, 2013: 113)

In examples like these, we do not see an explicit suggestion that the wishes and values of persons with dementia ought to be considered in decisionmaking. Nevertheless, articles like these do not depict caregivers as ‘uncaring.’ The last quote shows the caregiver’s determination to assure that her husband leads an active life. However, if their autonomy is to be recognized and respected, persons with dementia need to be consulted about whether they wish to lead such a life. And they need to be invited to express their view about the impact the provision of their care has on their relatives. While there was a strong emphasis on care at home across our sample, we did find examples of caregivers who decided they could no longer look after a family member with dementia. This decision is presented as an emotional struggle involving feelings of guilt: No child thinks their mum or dad should be in [a home]. It is hard to let it happen and the guilt remains with me to this day. Having said that, I would encourage people not to struggle for as long as I did and to remember that in a home there is someone there to help treat their symptoms and spend time with them working on their memory. (Choice, April 2013: 60-61)

Although in these examples, persons with dementia are not featured as autonomous agents, the importance of their wellbeing is emphasized. Moreover, magazines present the decision of putting a loved one into a care home as a difficult one that has emotional and moral implications. These articles may not explicitly reflect on how a person with dementia can be involved in decision-making. However, they do highlight that decisionmaking in the context of dementia care is an emotional and stressful experience, even when ethically a good decision has been made. Careful and informed argumentation may help families find a solution that is beneficial to all persons involved, but finding that solution can be an emotionally difficult process. A supportive environment: Enabling autonomy Across our sample, a small number of examples show alternative ways to share decision-making and support autonomy. These do not neatly map onto concepts of relational or personal autonomy as described in medical

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ethics. Still, they offer suggestions about how a supportive environment can maintain the autonomy of persons with dementia. They stress the positive impact such an environment has on the wellbeing of persons with dementia. Some of these articles were responses to campaigns by charitable organizations, such as the Alzheimer’s Society’s ‘Dementia Friends’ initiative (cf. Yours, March 19–April 1, 2013: 113-115). The latter aims to provide “a million people with the know-how to help people with dementia feel understood and included in their community” (“Dementia Friends” 2014) by 2015. As the following example illustrates, these articles highlight ways in which a supportive environment can help persons with dementia complete everyday tasks and remain autonomous members of their community: Tony Sterne of Appleton’s, a dementia-friendly butchers in Ripon, North Yorkshire, says: “It’s all about things such as taking someone who may be confused into a quiet area, writing down what they’ve bought to help them remember when they get home and ensuring they have a receipt. These things cost nothing – but can make a big difference.” (Saga Magazine, May 2013: 83)

Although rare, there are examples in our sample of shared decision-making processes. These were found in articles that discuss issues relating to older people needing assistance with some aspects of everyday life. One article we found discussed how to approach the choice of a care home. Readers of Choice magazine are encouraged to make a joint decision together with their family: “Moving into a care home is a big life decision so you and your family should spend time getting it right” (Choice February 2013: 3). Yet, examples like this one are absent in the category of articles that explicitly refer to dementia. While there were articles suggesting ways in which an environment can support the autonomy of persons with dementia, the magazines in our sample did not discuss how caregivers might actively seek to involve persons with dementia in decision-making. In their coverage of issues relating to dementia, Saga Magazine, Yours and Choice did not popularize the concept of autonomy as it is described in medical ethics. Nor did they offer alternative approaches. Instead, decision-making is presented as the prerogative of caregivers. Older people who have not been diagnosed with dementia feature as active agents who make autonomous decisions about their future. There are also examples of older people and their families making decisions together. Yet, the diagnosis of dementia features as a cut-off point at which autonomy is handed over.

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C ONCLUSIONS : M AGAZINES – O NE

STEP BEHIND AND ONE STEP AHEAD OF MEDICAL ETHICS One of the key premises shaping our research design was the argument that popular magazines ought to be analyzed because of their emphasis on the interpersonal. We assumed that we would find references to key features of relational autonomy in articles that emphasized the interpersonal. While all three magazines in our sample highlighted the importance of relationships for dementia care, they rarely explored ideas connected to relational autonomy. Instead, we found that the diagnosis of dementia is featured as a turning point in which the power to make decisions is handed over to others. This suggests that autonomy is no longer acknowledged when a person is diagnosed with dementia. A concept of autonomy based on capacity is advocated, something that patient advocacy groups have criticized (Alzheimer’s Association 2014). Thus, popular magazines do not popularize a concept of relational autonomy as it is advocated in practical guides to ethical dementia care or medical ethics. As we expected, we found a strong emphasis on relationships and emotions across our sample. Our findings highlight how popular discourse offers a platform where family members can express the difficulties and emotional dilemmas that making decisions on behalf of relatives with dementia entails. This suggests that magazines provide a perspective on dementia care that has received little attention in the literature on medical ethics. Medical ethics discusses the process of caregivers balancing different interests, but does not explore the emotionality of this process, an emotionality that remains even when decisions have been made and can be rationalized and justified. Our findings suggest that popular magazines put familial relationships at the heart of dementia care and stress the moral obligation to provide good care, an obligation that seems more important than considerations of autonomy. For a more holistic understanding of dementia care that includes the realities of persons with dementia and their caregivers, a focus on the familial setting of care and its emotionality seems an important next step in medical ethics. Our findings advance current debates in media studies and medical ethics in several ways. From the perspective of media studies, the focus on autonomy offers an additional conceptual framework for understanding the role of the media in marginalizing or empowering people with dementia. It allows us to elaborate upon a central interest in media studies: The way in

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which popular culture sustains or challenges social hierarchies of power. Furthermore, examining how autonomy is conceptualized in popular discourse also helps us better understand the extent to which media coverage is in tune with approaches to dementia care advanced in practical guides to good care (cf. Nuffield Council 2009; “Autonomy” 2009). Our findings suggest that popular magazines contribute to the marginalization of people with dementia, especially those in more advanced stages of the condition, by not strongly advocating the possibility of their involvement in decisionmaking processes. In this respect, popular magazines seem out of step with recent approaches in dementia care. From the viewpoint of medical ethics, our focus on popular magazines offers insights into the ways in which key assumptions about medical ethics are popularized. The concept that figures prominently in Saga Magazine, Yours, and Choice is that of personal autonomy in the case of persons preparing for the eventuality of developing dementia and caregivers making decisions. We believe that one possible explanation for this is the strong presence of a neoliberal approach to health in popular culture more generally. For example, lifestyle television programs emphasize the individual’s responsibility to manage their bodies and take responsibility for their health by making appropriate consumer choices (cf. Inthorn and Boyce 2011). Similarly, it has been observed that magazines for older people suggest the importance of taking control of one’s retirement by making informed lifestyle choices (cf. Featherstone and Hepworth 2013). In our sample, articles on dementia and old age care appear next to advertisements and articles on travel tips, healthy living, and gift ideas. They thus sit within a context of consumerism. Therefore, it is perhaps not all that surprising to find an emphasis on personal autonomy in articles that introduce readers to the steps they can take to prevent the early onset of dementia or to plan the financing of care.

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Jermyn, Deborah (2013): “Past Their Prime Time?: Women, Ageing and Absence on British Factual Television.” In: Critical Studies in Television: International Journal of Television Studies 8/1, pp. 73-90. Katsuon, Tokako (2005): “Dementia From the Inside: How People with Early-Stage Dementia Evaluate Their Quality of Life.” In: Ageing and Society 25, pp. 197-214. Kessler, Eva-Marie/Schwender, Clemens (2012): “Giving Dementia a Face? The Portrayal of Older People with Dementia in German Weekly News Magazines between the Years 2000 and 2009.” In: Journals of Gerontology, Series B: Psychological Sciences and Social Sciences 67/2, pp. 261-270. Kirkman, Allison M. (2006): “Dementia in the News: The Media Coverage of Alzheimer’s Disease.” In: Australasian Journal on Ageing 25/2, pp. 74-79. Kruse, Andreas (2005): “Lebensqualität demenzkranker Menschen.” In: Zeitschrift für medizinische Ethik 51, pp. 41-57. Landau, Ruth/Auslander, Gail K./Werner, Shirli/Shoval, Noam/Heinik, Jeremia (2011): “Who Should Make the Decision on the Use of GPS for People with Dementia?” In: Aging and Mental Health 15/1, pp. 78-84. “Later life in the United Kingdom,” 2013 (http://www.ageuk.org.uk/Do cuments/EN-GB/Factsheets/Later_Life_UK_factsheet.pdf?dtrk=true). McKay, Susan/Bonner, Frances (2004): “Educating Readers: Breast Cancer in Australian Women’s Magazines.” In: International Journal of Qualitative Studies in Education 17/4, pp. 517-535. Mackenzie, Catriona/Stoljar, Natalie (2000): Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self, New York: Oxford University Press. Milne, Alison (2010): “The ‘D’ word: Reflections on the Relationship between Stigma, Discrimination and Dementia.” In: Journal of Mental Health 19/3, pp. 227-233. Nuffield Council on Bioethics (2009): Dementia: Ethical Issues, Cambridge: Cambridge Publishers. O’Connor, Deborah/Purves, Barbara (2009): “Decision-Making, Personhood and Dementia: Mapping the Terrain.” In: Deborah O’Connor/ Barbara Purves (eds.), Decision-Making, Personhood and Dementia: Exploring the Interface, London: Jessica Kingsley Publisher, pp. 11-22.

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O’Neill, Onora (2002): Autonomy and Trust in Bioethics, Cambridge: Cambridge University Press. Quante, Michael (2002): Personales Leben und menschlicher Tod: Personale Identität als Prinzip der biomedizinischen Ethik, Frankfurt a.M.: Suhrkamp. Radimer, Kathy/Harvey, Philip W.J. (1995): “Where Do Queenslanders Get Nutrition Information?” In: Australian Journal of Nutrition and Dietetics 52/2, pp. 94-99. Van Gorp, Baldwin/Vercruysse, Tom (2012): “Frames and Counter-Frames Giving Meaning to Dementia: A Framing Analysis of Media Content.” In: Social Science and Medicine 74, pp. 1274-1281. Wearing, Sadie (2013): “Dementia and the Biopolitics of the Biopic: From Iris to The Iron Lady.” In: Dementia 12/3, pp. 315-325. Weidinger, Lisa (2013): “Menschen mit Demenz – Menschen ohne Autonomie? Ein Spannungsverhältnis aus pflegeethischer Sicht.” In: Pflegenetz 5/13, pp. 23-27. Wetzstein, Verena (2012): “Demenz als Ende der Personalität? Plädoyer für eine Ethik der Relationalität.” In: Silke Schicktanz/Mark Schweda (eds.), Pro-Age oder Anti-Aging? Altern im Fokus der modernen Medizin, Frankfurt a.M.: Campus, pp. 179-195. “Yours Retirement Service,” n.d. (http://equityrelease.yours.co.uk/).

Representation of Alzheimer’s disease among non-specialists A cross-cultural study between Paris and Boston M ARIE -C HRISTINE N IZZI You see a bird, I see an antelope; the physicist sees an X-ray tube, the child a complicated lamp bulb; the microscopist sees coelenterate mesoglea, his new student sees only a gooey, formless stuff. Tycho and Simplicius see a mobile sun, Kepler and Galileo see a static sun. (Hanson 1965: 17)

With characteristic elegance, Norwood Hanson reminds us of how much our theories influence the way we perceive any given phenomenon. We experience the world and we make sense of it based on our repertoire of ideas and concepts. The same object – say an X-ray tube or a topographic map – is perceived very differently after one acquires the knowledge necessary to decrypt its meaning and use it appropriately. As much as we tend to forget it, our knowledge is deeply context-dependent. This paper examines the context-dependence of the ways in which Alzheimer’s disease (AD) is represented. It compares the ways in which nonspecialists represent AD in two different cultural settings, Paris and Boston. We start from the assumption that people who represent the same object differently possess different understandings of what the object is. Hence, we expect that the study of social representations among non-specialists can shed light on how a disease studied internationally as a single theoretical construct can take on very different meanings in different cultural contexts.

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In the past 15 years, there has been a growing awareness that late-onset dementia poses an increasing number of social and medical challenges both in the scientific community and in society at large. Initiatives have been launched around the world to promote research, improve diagnosis, come up with efficient medication, and develop appropriate care facilities. However, there is a significant gap between the relative agreement among scientists discussing AD and the diversity in socio-economic policies in countries with drastically different health care systems. In this paper, we focus on two contexts: Paris (France) and Boston (United States). Both cities are major cultural, medical and university centers, with populations of about 5 million for the city and its closest suburbs and average annual incomes of about $50.000 in 2011. The prevalence of AD in both areas is similar, averaging around 15 percent of the senior population. At the national level, it is estimated that roughly 1.5 percent of the total population in France suffer from AD and about 1.7 percent of the population in the United States. AD is the fourth highest cause of death in France and the sixth highest in the United States. Thus, for all intents and purposes, the prevalence of the disease is comparable in Paris and Boston. The two, however, differ markedly in cultural and socio-medico-politic contexts, and, more specifically, in the way their local governments handle communicating information about AD to the general public.

T HE

IMPORTANCE OF THE SOCIO - CULTURAL CONTEXT

Paris France has a long history of nation-wide Alzheimer plans funded by the government and advertised in the media via massive information campaigns. In the past 15 years, three such plans have been launched, one in 2001, one in 2004 and one in 2008. From this situation, we can expect Parisians to have had very considerable exposures to systematic information campaigns about AD. At the time of data collection, France had   

427 local AD clinics taking care of 350.000 patients annually; 27 regional memory centers supporting diagnosis of atypical cases and research via the creation of a national database (BNA); 350.000 patients receiving full health care cost coverage for Long Term Condition (ALD).

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The first national plan, promulgated in 2001, was supported by the then French Minister for Health, Bernard Kouchner, with the primary goals of informing the public and improving diagnosis. At the time, there were 400.000 cases of AD with an estimated increase of more than 100.000 cases per year. In October 2001, the government announced a series of measures to meet the socio-medico-economic challenge of AD (“Programme pour les personnes souffrant” 2001). In response to one of these measures, “Goal 4,” which insists on the need to “inform and support” patients and their families, the government allocated 150 million francs annually for five years to create a network of 1.000 local Centers for Information and Coordination (CLIC) to help families and inform the general public. A fund with an annual budget of 16.5 billion francs was established to support patients with AD beyond the universal health care system (medical and technical help at home, support for caregivers, etc.). Starting in January 2002, this Personal Allocation for Autonomy (APA) was given to every senior citizen over 60 in proportion to their degree of dependence (AGGIR scale). The plan also allocated a) 79 billion francs to the creation of 7.000 openings in daycare over four years, adding to the 3.600 existing ones, to be jointly funded by the universal health care and the APA; and b) 5 million francs to fund a network of 232 local clinics for diagnosing and treating patients with dementia through the joint action of specialized neuropsychologists and interregional coordination centers (Circulaire 2002). In 2003, a team called Prospective Instance for AD was created with the mission of identifying the general public’s main needs and concerns using a two-year national survey. This work resulted in the promulgation of a brochure nationwide in 2005 geared towards educating the general public about the disease and the new structures created by the 2001 plan. The campaign of 2004, supported by the then French Minister for Health, Philippe Douste-Blazy, allotted 15 million euros to extend the initial measures by 100 new memory clinics and 13.000 new daycare and assisted living openings by 2007. At the time, 827.000 patients were receiving the APA and there are 427 CLICs. Of special interest was the decision to designate AD as a long-term condition, which gave patients the right to full health care coverage by the government (Décret 2004). In 2007, the government declared AD a “great national cause” and a massive information campaign was launched using an array of media (internet, TV, radio, newspapers, billboards, and flyers in health care facilities). The campaign main-

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ly revolved around familiarizing the public with AD’s early symptoms and with the impact of the disease on patient autonomy in everyday life. Between 2008 and 2012, informing the public again became the center of the government’s plan. It announced the launch of a nation-wide qualitative survey to “identify the representation of AD in the general public,” which would be repeated annually and reported in the media to give the public some feedback. Of specific interest in the 2008 plan was the focus of Measure 37 “Investigate the social representation and attitude of the public about Alzheimer’s disease.” After a preliminary assessment of the current representation across the world based on previous literature (Scodellaro and Deroche 2008) and three follow-up studies in France in 2009 (“Plan Alzheimer” 2012), the main line of communication was set as “providing the public with a richer knowledge of the symptoms to fight the current prevalence of fear in the social representation of Alzheimer’s disease.” Under the French presidency of the European Union the same year, France declared AD a European priority and allocated funding for joint research programs and the launching of a heavily advertised international conference with feedback to the general public in the media. Boston In contrast, in Boston, information about AD is conveyed by a decentralized cohort of actors. The city has just begun to implement state information campaigns for the general public. At the time of data collection, their state campaign had not yet been launched. From this situation, we can expect Bostonians to have been much less exposed to systematic information campaigns about AD. At the federal level, the United States adopted the “National Alzheimer’s Project Act” in 2011. It announced a large public education campaign with the goal of “informing to fight fear” (cf. “Building Awareness” 2013). Other sources of information regarding symptoms, clinical trial, and current research include the National Institute of Aging (NIA), which has established the Alzheimer’s Disease Education and Referral Center, and the Administration on Aging (AOA), one out of four units of the Administration for Community Living (ACL) charged by the US-Department of Health and Human Services to provide general policy coordination. Interestingly, one of the missions of the AOA is to “advance state initiatives toward coordinated systems of home and community-based care – linking

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public, private, and non-profit entities that develop and deliver supportive services for individuals with AD and their family caregivers” 1 through their Alzheimer’s Disease Supportive Services Program (ADSSP). One statelevel conduit for such programs is the Executive Office of Elder Affairs. Additionally, the NIA created 29 Alzheimer Disease Centers (ADCs) to conduct research, treatment, and education; two of which are located in Massachusetts. At the other end of the spectrum from the federal level is the Massachusetts/New Hampshire Chapter of the Alzheimer Association. Every year, it organizes a number of actions to raise awareness through a helpline, several care guides, walks and fund raising events throughout the state, as well as specific actions with local partners such as Tufts Health Plan which offered a free dementia-consultation to their members in 2013. However, most of these actions reach people with a preexisting interest in AD rather than the general public in the way a systematic state plan could. Moreover, they rely mostly on individual partnerships rather than impacting the entire network of actors. Some other, more generalized initiatives, such as the distribution of 100.000 flyers on World’s Alzheimer’s Day in 2012 in partnership with Dunkin’ Donuts, are a step towards educating the general public (Annual report of the Alzheimer Association 2013). In 2010, Governor Patrick Deval convened the Alzheimer’s disease and Related Disorders (ADRD) State Plan Task Force, born from a partnership between the Massachusetts Executive Office of Elder Affairs and the Alzheimer’s Association, Massachusetts/New Hampshire Chapter. To identify the concerns and needs of Massachusetts citizens, “four listening sessions were held throughout the state, involving more than four hundred people.” In 2012, the report declared its first recommendation as “informing the population” and stressed the following points:   

1 2

AD patients and families often do not know where to get information; even when structures exist, a majority of primary care physicians indicated that they were not knowledgeable about these resources;2 respite services are not affordable for the majority of families in the Commonwealth.

http://www.aoa.gov/AoARoot/AoA_Programs/HPW/ALz_Grants/index.aspx. Results from a survey conducted by the Massachusetts Medical Society in collaboration with the Alzheimer’s Association in 2010.

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These conclusions were extremely important as they outlined the specific context set by the health care system in Massachusetts. As the report explained, “the therapeutic benefits of respite services for the person with Alzheimer’s or a related disorder are not defined as ‘medically necessary’ by federal, state or private insurers, and thus most often do not qualify for reimbursement through these programs.” However, the recent adoption of the Affordable Care Act, which includes an Annual Wellness Visit, could become a means for launching an information campaign targeted at both health care providers and Medicare recipients. The Task Force’s recommendations were intended to be implemented “over the next 5 years by the Executive Office of Health & Human Services (EOHHS), Elder Affairs and the Alzheimer’s Association of Massachusetts and New Hampshire in conjunction with other stakeholders through the establishment of an Alzheimer’s Team” (State Plan Workgroup 2012). In 2013, the same year Boston was hosting the Alzheimer’s Association International Conference (AAIC), Massachusetts was the first American state to register with the Alzheimer’s Early Detection Alliance (AEDA), with the goal of helping to “provide all state employees with information about early warning signs of Alzheimer’s and resources to support those affected and their families.” Interestingly, the official announcement on www.mass.gov included a link to the Massachusetts and New Hampshire Chapter Home page on the Alzheimer Association’s website – which lists ten signs of AD, stages, risk factors, etc. The state’s partnering with the Alzheimer’s Association was a result of efforts by the Massachusetts administration under Patrick Deval to implement recommendations to increase awareness within the ADRD State Plan. This partnership was another step towards approaching the public’s accessibility to information about AD more systematically, while advertising the state’s initiative in the media. In 2014, the Department of Public Health, announced a “Request for Promulgation of Proposed Amendments to 105 CMR 150,000: Licensing of Long-Term Care Facilities, Regarding Minimum Standards for Dementia Special Care Units.” The text underlined that currently, 105 CMR 150.000 does not have specific requirements for facilities or nursing home units that advertise themselves as providing specialized care for dementia. The proposed regulatory amendments would establish minimum standards for these nursing units, and require training on dementia care for direct care workers,

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therapeutic activity directors and supervisors of direct care workers in both traditional nursing units and DSCUs.

This text and the ADRD State Plan are a strong sign that Boston is implementing a systematic course of action with regard to AD that includes an information campaign targeted at the general public as well as health care providers. We anticipate that a survey posterior to the implementation of this plan would find a modification in the social representation of AD currently described in the literature (Ayalon 2004; Connell 2007; Cutler 2002; Metlife Foundation 2006; Roberts 2003; Steckenrider 1993).

P OPULATION

AND METHODS In this survey, we investigate the social representation of Alzheimer’s disease in two matched samples: a French sample collected in Paris and an American sample collected in Boston (see table 1; total n=100, 50 females, mean age = 44, from 23 to 87 years old), following the method established in the field (Abric 1994; Chauchat 1995; Doise 1986; Doise et al. 1992; Flament 1994; Moscovici 1961; Verges 2001). We are interested in how the core elements of representation of AD vary across these two samples as a function of nationality, gender, age, and personal contact with persons suffering from AD. We hypothesize that the social representation of AD is contextdependent, so we expect to find different representations across countries that are related to the different exposure of the general public to large information campaigns in Paris and Boston. AD affects primarily women and persons over 50 years old. Therefore, demographic variables are interesting for assessing the degree to which the representation within a homogenous population might vary with respect to age and gender. The last variable hypothesizes that being in direct contact with a person suffering from AD (here called a patient) will provide the respondents with a firsthand knowledge, likely richer and less stereotypical than respondents without such knowledge. To test our hypotheses, we analyze our data first for the total sample and then group by group.

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Table 1. Population statistics N=

Subjects

Females

Age 50%

Memory

Memory Dependence ***

Body > 25%

Aging Sad *** Dementia ** Family impact Patient Brain Decline Scary Health care

Self Aging

Margins >10%

Illness Lonely Disorientation Family impact Scary Brain Decline Patient Incurable Communication

We can draw several observations from this table. First, the two samples have two main items in common: Memory loss, not surprisingly, is mentioned by 56 percent of American respondents and 68 percent of French respondents, and aging is mentioned by 40 percent and 28 percent, respectively. Respondents place these items at the center of their representation of AD no matter which country they are from. However, the next thing worth noticing is that differences between French and American respondents seem to be driven by two other items: sad for the American respondents and loss of independence for the French respondents (figure 3). These two high-frequency items (mentioned by 40 percent and 52 percent of the re-

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spondents, respectively) are also the ones for which the discrepancy between the two groups is the highest (p 50 % > 25 %

Margins

Fr Women Dependence* (72) Memory (64) Lonely Illness

Fr Men Memory (68)

US Women Memory

US Men Memory

Dependence (40) Self Aging

Disorientation Family impact Aging Mood Disability Brain Scary

Illness Research Disorientation scary Patient Decline Incurable Lonely Communication

Sad Aging Family impact Dementia Scary* Brain Patient Confusion Research

Aging Patient Dementia Sad Family impact Brain Decline Incurable Illness Disorientation

Our hypothesis with respect to the effect of age was that the representation of AD would evolve along the lifespan. Indeed, three observations from the results reported in table 4 appear to support this hypothesis. First, the heart of the representation is different across age groups: Young respondents mention aging significantly more often than older respondents (p=0.0003), and for the American sample, only older respondents mention sad. Second, the representation of young respondents is very homogeneous. For instance, memory is mentioned by 84 percent of young versus 50 percent of older French respondents, and by 69 percent of young versus 42 percent of old American respondents. Third, if we look at the margins, there is an asymmetry between younger and older French respondents that is similar to the one we observed between French and American respondents, in that the young French respondents identified more general items (incurable, family impact, lonely, and dementia) compared to the symptom-oriented responses of older French respondents (loss of communication, tremor, mood disorder).

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Table 4. Effect of age Age

Fr < 44 yo

Fr > 44 yo

US < 44 yo

US > 44 yo

> 50 %

Memory*(84 %) Dependence (63) Aging*** (50) Self Disorientation Illness

Memory (50) Dependence (50)

Memory (69) Aging (54)

Sad (50)

Self

Incurable* Family impact Lonely Dementia

Illness Scary Brain Communication Tremor Mood Decline Disorientation

Brain Dementia Sad Family imPact Patient Decline Scary Dependence

Memory Family impact Dementia Patient Aging Illness Brain Health care Decline Frustrating

> 25 %

Margins

We suggest that the difference across age groups reflects the source of their information: In probably being more receptive to information in the media, younger respondents may have acquired a more stereotypical, homogeneous knowledge about AD, whereas older respondents most likely relied on a variety of personal experiences with aging through their own experiences, and/or that of their parents or friends. This raises another possible factor, which could be embedded in our observation of the age effect: Older respondents are more likely to be in direct contact with a person suffering from AD. To check the possible contribution to this factor, we ran one more analysis. Is having first-hand experience determinant? We predicted an effect based on direct contact with a patient. Specifically, we expected the respondents in direct contact with a patient to have a rich-

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er, more accurate representation of AD. Not surprisingly, contact did significantly affect the frequency of mentions of a loved one who is ill in both samples (US p=0.0002; Fr p=0.01). More surprising is the very clear interaction effect of direct contact on the heart of the representation in the French sample. Whereas memory is prioritized by respondents with no personal contact, loss of independence is inversely prioritized by the respondents in direct contact with a patient. The fact that dependence is mentioned more often by women and respondents in direct contact with a patient is consistent with most of the caregivers and patients being female. However, this effect is not replicated in the American sample, suggesting that there is also a cultural component to this predominance of dependence in the French sample. A similar interaction of smaller magnitude occurs in the American sample between memory, again prioritized by the respondents with no contact, and sad, prioritized by the respondents in direct contact. The fact that this interaction caused by direct contact on the heart of the representation replicates in both samples for the items that were driving the representations apart is a major finding: It means that the divergence across nationalities is at least partially driven by the difference across respondents in direct contact with a patient. We can also comment on the items mentioned only by one group: In the French sample, only the respondents without contact mention the need for research. We suggest that this is a direct byproduct of the information campaigns as they are closely related to research funding. Respondents who rely on their personal experience are less likely to think at the institutional level but rather at the level of everyday life challenges. In the American sample, only the respondents older than 44 years and in direct contact with a patient mention health care. We suggest that this illustrates the relative lack of systematic campaign of information towards the general public in Boston: Only people who struggle personally with AD think about the implications in terms of care, insurance and treatment. Moreover, by merging the information in table 5, we can say that scary is mentioned only by respondents older than 44 years with no direct contact to a patient in the French sample, but is mentioned only by respondents younger than 44 years and without any direct contact in the American sample.

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Table 5. Effect of direct contact Contact

Fr No contact

Fr contact

US No contact

US Contact

> 50 %

Memory (77)

Memory (70)

Patient***

> 25 %

Dependence (47) Self Aging Disorientation

Dependence (70) Memory (45) Illness Communication Patient*

Sad (48) Memory (44) Dementia Aging Family impact Incurable

Margins

Lonely Illness Research Family impact Dementia Brain Scary Tremor

Aging Brain Family impact Sad (30) Decline Dementia Illness Scary Dependence

Incurable Family impact Aging Self Decline Lonely Brain Mood

C ONCLUSIONS : U NIQUE

Brain Self Health care Decline

REALITIES BEYOND A SHARED FEAR OF THE UNKNOWN In this paper, we have investigated the social representation of Alzheimer’s disease in two comparable samples from Paris and Boston. We hypothesized that the representation of AD would vary as a function of the cultural context. Specifically, we were interested in the effect of systematic information campaigns towards the general public on their representation of AD. The French sample has been exposed to several systematic information campaigns, which is not yet the case with the American one. Indeed, in 2009, a national review about the public’s perceptions of AD among the US-population concluded that “[t]he majority of studies indicated that the US public lacks specific information about Alzheimer’s disease and current treatments” (Anderson et al. 2009: 8). Following our hypothesis, the French sample should show an expertise effect, with a richer, more homogeneous and more structured representation than the American sample.

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Indeed, the analysis of the mental pathways of each group – an innovative methods measuring the directionality of self-generated responses – showed how much more structured and homogeneous the representation of the French sample was compared to that of the American sample. In terms of content of the representation, beyond the expected agreement on memory and aging, we found a strong difference across nationalities, both in the structure and in the content of the representations, suggesting not only an expertise effect but also a cultural effect. Based on raw frequencies, American and French respondents prioritize the sadness and the loss of independence very differently in their representation. We interpret this inverse polarity as representative of a cultural bias, apparent even in the lower-frequency items that do not reach the central representation. One third of the items mentioned solely by American respondents point at emotions of the respondent (frustrating, unfair, anger, bummer, hope, pathetic, horrible) and only one item is a symptom of the disease (not recognizing). In contrast, the same proportion of items solely mentioned by French respondents focuses on symptoms of pathological aging (loss of dignity, loss of balance, running away/getting lost, lying) and only one points at the respondents’ emotions (powerless). In terms of nature of the representation, we can thus conclude that the French respondents focus on the idea of loss (mentioned three times more often than memory, the item with overall highest frequency in the French sample) and describe primarily the experience of the patient: one of illness, solitude and dependence, characterized by a progressive loss of self, communication, and sense of orientation (cf. Nizzi 2013). The American respondents, on the other hand, seem to describe the impact of the disease outside of the patient, with two main poles: their own feelings (sad) and the societal impact (family impact, health care). This is consistent with the findings summarized by Anderson and colleagues: “[R]eports documented that survey respondents expressed a great deal of concern about the disease, both from a personal perspective and the potential of caring for someone else” (2009: 9). We assumed that this difference was caused at least in part by the different exposure to broad information campaigns towards the general public. It is important to note, however, that this study has several limitations which require that we are cautious with our interpretation. The sample size and the recruitment areas are limited and we relied on collective data for socio-economic status. Additionally, as is the case for all cross-cultural

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studies, many other factors can contribute to the differences we observed across countries. For instance, different health care systems seem crucial in how a disease is experienced and thus represented, as are differences in the stigma associated with the disease in each culture. But other unidentified factors might also contribute to our findings. One way to determine whether the differences in representation between Parisians and Bostonians is caused by the difference in the level of information would be to re-test the Bostonian sample in five years, after the effects of the recent political measures have had time to reach the general public. If the same differences in representation were still found after the Bostonian population has reached a similar level of information as the Parisian one, we would be able to exclude that the difference in representation is mainly driven by a difference in information. Our results also underline the effect of having a personal contact with a patient, which constitutes a first-hand source of information (Blendonet al. 2012). Across nationalities, respondents in direct contact with a patient show more divergent patterns of responses than those without such contact. The two interactions we observed between memory and dependence in the French sample and memory and sad in the American one imply that the divergence we observed over the total sample was in part driven by the difference across respondents in direct contact with a patient. In other words, the main difference between the French and the American representation does not seem to be driven by gender or age but rather by the difference in the items given by these subsets of respondents that have a firsthand personal experience of AD. This result suggests that the difference in cultural contexts mainly affects respondents who personally have to deal with the concrete modalities of the local health care system. This effect is further reinforced by the fact that information campaigns focus on the symptoms of the disease, thus providing a unified representation to people who lack a direct experience of the disease, whereas respondents relying on first-hand experience are most likely to mention items specific to their individual experience, thus reflecting a more diverse representation. Finally, the specific pattern of response for the item scary is interesting in relation to the hypothesis of both the French and the Massachusetts government that more information about AD would decrease the fear in the general public. This hypothesis seems to be supported by the fact that only respondents with no contact mention scary, independent of their nationali-

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ty. We can argue that people in direct contact with a patient know in fact more about the disease than other people and the fact that they do not mention scary seems to justify the hypothesis linking more information to less fear. In our survey, we also learn something more: Only older French and younger American respondents (all with no direct contact) mention scary. If we are correct to assume that younger populations are more likely to have been reached by information campaigns in the media (on the internet for instance), then the fact that young French respondents do not mention scary when older French respondents do might be a result of the information campaigns and a proof of their efficiency in reducing fear of the disease. The American sample confirms this interpretation as it is the younger Americans who mention scary but not the older Americans who might have more opportunities to get indirect personal information. Therefore, the younger Americans would be especially vulnerable to fear in a context where no massive information campaign has happened yet. Once the new measures have been in effect for some time, a study among young Massachusetts residents could measure the reduction of fear following information campaigns, thus providing a measure of efficiency in a different medico-cultural context than Paris.

R EFERENCES Abric, Jean Claude (1994): Pratiques sociales et représentations, France: P.U.F. Administration for Community Living (www.acl.gov). Administration on Aging (www.aoa.org). Affordable Care Act (http://www.hhs.gov/healthcare/rights/law/). Anderson, Lynda A./Day, Kristine L./Beard, Renée L./Reed, Peter S./Wu, Bei (2009): “The Public’s Perceptions About Alzheimer’s Disease Among the U.S. Population: A National Review.” In: Gerontologist 49/S1, pp. 3-11. Annual Report of the Alzheimer Association (2013) (https://www.alz.org/ annual_report/overview.asp). Ayalon, Liat/Aréan, Patricia A. (2004): “Knowledge of Alzheimer’s Disease in Four Ethnic Groups of Older Adults.” In: International Journal of Geriatric Psychiatry 19, pp. 51-57.

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Blendon, Robert J./Benson, John M./Wikler, Elizabeth M./Weldon, Kathleen J./Georges, Jean/Baumgart, Matthew/Kallmyer, Beth A. (2012): “The Impact of Experience With a Family Member with Alzheimer’s Disease on Views about the Disease Across Five Countries.” In: International Journal of Alzheimer’s Disease. “Building Awareness,” July 2013 (http://aspe.hhs.gov/daltcp/napa/#Natl Plan2013). Chauchat, Hélène (1995): L’enquête en psychologie sociale, France: P.U.F. Circulaire N°DHOS/O2/DGS/SD5D/DGAS/SD2C/DSS/1A/2002/222 du 16 avril 2002 “relative à la mise en œuvre du programme d’actions pour les personnes souffrant de la maladie d’Alzheimer ou de maladies apparentées” (http://www.sante.gouv.fr/fichiers/bo/2002/02-18/a0181727.ht m). Connell, Cathleen M./Roberts, Scott J./McLaughlin, Sara J. (2007): “Public Opinion About Alzheimer Disease Among Blacks, Hispanics, and Whites: Results from a National Survey.” In: Alzheimer Disease and Associated Disorders 21, pp. 232-240. Cutler, Neal E./Whitelaw, Nancy A./Beattie, Bonita L. (2002): American Perceptions of Aging in the 21st Century, Washington: National Council on Aging. Cutler, Stephen J./Hodgson, Lynne G. (1994): “Anticipatory Dementia.” In: Perspective on Aging 23/4, pp. 21-22. Décret n° 2004-1049 du 4 octobre 2004 (http://legifrance.gouv.fr/affich Texte.do?cidTexte=JORFTEXT000000628065&dateTexte). Doise, Willem (1986): “Les représentations sociales: Définition d’un concept.” In : Willem Doise/Augusto Palmonani (eds.), L’étude des représentations sociales, Paris: Delachaux et Niesle, pp. 81-94. --- /Clemence, Alain/Lorenzi-Cioldi, Fabio (1992): Représentations sociales et analyses de données, Grenoble: P.U.G. Executive Office of Elder Affairs (http://www.mass.gov/elders). Flament, Claude (1994): “Aspects périphériques des représentations sociales.” In: Denise Jodelet (ed.), Les représentations sociales, Paris: P.U.F, pp. 204-219. Hanson, Norwood R. (1965): Pattern of Discoveries, Cambridge: Cambridge University Press.

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INSERM, “Dossier d’information Alzheimer,” 2013 (http://www.inserm.fr/ thematiques/neurosciences-sciences-cognitives-neurologie-psychiatrie/d ossiers-d-information/alzheimer). Jaspers, Jos M./Fraser, Colin (1984): “Attitudes and Social Representations.” In: Robert M. Farr/Serge Moscovici (eds.), Social Representations, Cambridge University Press: Cambridge. Jodelet, Denise (1991): Madness and Social Representations, Harvester Wheatsheaf: Hemel Hempstead. Massachusetts Alzheimer’s Disease and Related Disorders State Plan Recommendations, State Plan Workgroup, 2012 (http://www.alz.org/docu ments_ custom/ALZ_State_Plan_Mass.pdf). Massachusetts’ Executive Office of Elder Affairs (http://www.mass. gov/elders). MetLife Foundation (2006): Americans Fear Alzheimer’s More than Heart Disease, Diabetes or Stroke, But Few Prepare, New York: Metlife Foundation. Moscovici, Serge (1961): La psychanalyse son image son public, Paris: Presses Universitaires de France. --- (1988): “Notes Towards a Description of Social Representations.” In: European Journal of Social Psychology 18, pp. 211-250. National Institute on Aging, Alzheimer’s Disease Education and Referral Center (http://nih.nia.gov/alzheimers). Nizzi, Marie-Christine (2013): “La notion de perte d’identité dans la représentation sociale de la maladie d’Alzheimer.” In: Klesis 27, pp. 263287. “Plan Alzheimer,” 2012 (http://www.plan-alzheimer.gouv.fr/mesure-no37. html). “Programme pour les personnes souffrant de la maladie d’Alzheimer et de maladies apparentées,” Octobre 2001 (http://www.sante.gouv.fr/IMG /pdf/plan_2001_2005.pdf). Request for Promulgation of Proposed Amendments to 105 CMR 150.000: Licensing of Long-Term Care Facilities Regarding minimum Standards for Dementia Special Care Units (www.mass.gov/eohhs/docs/dph/legal /hcw-immunization/proposed-amendments-105-cmr-150.docx). Roberts, J. Scott/Connell, Cathleen M./Cisewski, Dawn/Hipps, Yvonne G./ Demissie, Serkalem/Green, Robert C. (2003): “Differences Between

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African Americans and Whites in Their Perceptions of Alzheimer Disease.” In: Alzheimer Disease and Associated Disorders 17, pp. 19-26. Scodellaro, Claire/Deroche, Céline (2008): “Les représentations sociales de la maladie d’Alzheimer.” In: INPES, pp. 1-18. Site Santé du Ministère des Affaires Sociales et de la Santé, “Archives: Les plans Alzheimer 2001-2005 et 2004-2007” (http://www.sante.gouv.fr/ archives-les-plans-alzheimer-2001-2005-et-2004-2007.html). Steckenrider, Janie S. (1993): “What People Know About Alzheimer’s Disease: A Study of Public Knowledge.” In: American Journal of Alzheimer’s Care and Related Disorders Research 8, pp. 6-14. Vergès, Pierre (2001): “L’analyse des représentations sociales par questionnaires.” In: Revue française de sociologie 42/3, pp. 537-561.

In the company of robots Health care and the identity of people with dementia IKE KAMPHOF

Morning light streams into a kitchen where an elderly man is seated at the table. A robot, which looks somewhat like a child size astronaut, diligently serves him breakfast. The man – whose name turns out to be Frank – eyes the food suspiciously. A conversation ensues. Frank: “Just bring me some cereal.” Robot: “That cereal is full of unhealthy ingredients. I threw it away.” Frank: “Don’t throw away my stuff!” Robot: “Frank, that cereal is for children. Enjoy this grapefruit.” Frank: “You’re for children stupid.” While Frank picks at his plate, Robot suggests they will garden together as “Frank, you need a project. Mental stimulation plus a regimented schedule will vastly improve your cognitive functioning. Besides, it’s good exercise.” Frank grumbles and the bantering of this odd couple ends with the two of them out in the yard, Frank sunning himself while Robot rakes. The scene is science fiction of course. Taken from the movie Robot & Frank (2012), a buddy film set in the near future, it pictures the first interactions between the main protagonists. The movie tells the story of Frank, an elderly man with beginning dementia who starts to lose the grip on his household. To meet this situation, his son, who also has a job and a young family to care for, buys him a robot butler – or, as Robot insists, “a healthcare aide.” Though Robot & Frank was the first feature film for both director Jake Schreier and scenario writer Christopher Ford, it was praised for its innovative, humorous approach to the subject of aging and frailty (cf. http://www.imdb.com/title/tt1990314/externalreviews).

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Though the problem of care is a familiar theme in movies on dementia, the comic mode of Robot & Frank is indeed at least surprising. Dementia stories tend to opt for tragedy, emphasizing the double loss that identifies dementia in our culture: loss of self for the person who is affected by the condition and loss of partner or parent suffered by the immediate social environment that carries ‘the burden of care’ (cf. Basting 2009: 41; Chivers 2011: 60-62, 73). Robot & Frank also tells of gains. After some initial struggles, as expressed in the scene above, Frank not only wins a friend in Robot, he regains a sense of identity while the two of them engage in ‘projects’ together. Moreover, the movie’s light approach notwithstanding, I will argue here that Robot & Frank provides a timely critical reflection on recent developments in dementia care. The idea that assistive robotics is a welcome solution to meet the care needs of increasing percentages of frail elderly people in the industrialized societies plays prominently in research and health care policy in Japan, the US, and Europe (cf. Blackman 2013: 763; Paterson 2010: 122f). Care, it is expected, will mostly take place in private households, both because people prefer to age at home and because it is more cost effective. Many elderly people will be living alone, including those with dementia, with family not always available. And many will not be called Frank, or John, but also Linda and Marie. How will this development reconfigure the public and personal identity of people with dementia? Following a social model of disability, Kitwood (1997: 46) showed how people with dementia are vulnerable to acts of stigmatization, objectification, and infantilization that undermine their personhood. Within a hypercognitivist culture, they are seen as missing the core of what it means to be human: an autonomous, rational self. As an alternative to the exaggerated focus on individual rational consciousness, Kitwood proposed a relational view of identity. He argued that “person centered care” (ibid.: 90) which recognizes people with dementia as unique individuals provides comfort, enables participation in meaningful activity, and supports their identity. However, where care is increasingly being mediated by technologies, social models of disability have to be extended to incorporate the new cultural material arrangements (cf. Moser 2006: 376). Person-centered care also demands person-centered technologies. At present, service robots for people with dementia aging at home exist only in development. They appear, physically as well as imagined, talked

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and written about, in laboratories, pilot projects, research and policy papers, and also in mainstream news and popular culture. 1 In this article, I will focus on the latter domain as a reflection of some main trends in the current technological imagination. The stories we tell about robots and dementia articulate how dementia is enacted today. More importantly, they co-shape the future as identities imagined today are built into robots and into the care arrangements in which they will function. Drawing on the varied body of actor-network studies, postphenomenology and the work of Haraway (1991, 2008), I will trace the reiteration of malignant stereotypes and, conversely, the potential for new views on the identity of people with dementia that emerge in mainstream media around assistive robots. What roles are robots envisioned to play for people with dementia and how do these affect their identity? I focus on news items that appeared between 2008 and 2013 on two projects, CompanionAble (http:// www.companionable.net) and Giraff+ (http://www.giraffplus.eu), which received relatively wide coverage. I will compare the identity of people with dementia as it emerges in relation to these robots with some alternative perspectives suggested in Robot & Frank. First, however, I will sketch the field of assistive robotics within the general theoretical framework.

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DEMENTIA , AND NORMALITY Two converging forces determine the current transformation of robotics as primarily a military and industrial technology to a service robotics for professional and domestic use. One is the profit-motivated robot industry searching for new markets, the other government agencies that actively stimulate this diversification by providing large research grants (cf. Paterson 2010: 111). In health care, this development is further motivated by demographic trends, inevitably portrayed as a looming crisis, in which increasing numbers of frail elderly people will have to be cared for by ever fewer young people to do care work and pay for the health care system (Sparrow and Sparrow 2006: 142). In discussions on elderly care, people with dementia figure as the pre-eminent challenge, often in alarmist ways

1

Another example is the Swedish TV series Äkta Människor (Real Humans 2012) about a future society in the company of service robots. The geriatric carebot Vera in this series, more a prison warden than a caring companion, presents a grim picture of elderly care. Because the series does not deal with dementia specifically I excluded it from this study.

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as a “global health timebomb” (Alzheimer’s Society 2012) or “tsunami” (“Britain Unprepared” 2012), that threatens to destroy national care systems. Without innovative technological solutions, it is argued, health care will become undoable and unaffordable (European Commission 2013: 2). Critical questions have been raised on whether robots are indeed a viable and proper answer to the care needs of elderly people (cf. Sparrow and Sparrow 2006; Sharkey and Sharkey 2012). Firstly, it is unlikely that robots could do complex cooking or cleaning jobs in the near future, let alone assist with toileting, showering, dressing, aid with mobility, and other practical care tasks. Robots could be more apt in a second set of tasks, the monitoring of health and safety. They can measure physical indicators of health and wellbeing such as blood pressure and patterns of activity around the house. They can support the tracing of emergencies such as falls or signal that cookers or taps are left on unused. Unclear is how much of an improvement robots would be over existing monitoring systems that make use of cheaper and readily available technologies, such as sensors, alarm buttons, PCs, and cell phones. A robot meeting a person who is immobilized could be an advantage but requires complex navigational skills that have not materialized yet. Ethical issues arise in so far as the use of robots threatens to lead to a diminishing of contact with human caregivers. This becomes more poignant where robots are envisioned in a third task, as potential companions to elderly people. For Sparrow and Sparrow (2006: 155), all of these uses of robots, but the last most poignantly, reflect a grave disrespect for frail elderly people. Care is being instrumentalized and older people are objectified as problems to be solved instead of people to engage with. Sharkey and Sharkey (2012: 35) nuance this and also consider that robots could facilitate social contact by videophone applications or by stimulating interaction with the robot that could rub off on contact with human beings. While I share the concerns phrased, the approach to robotics that they emerge from tends to focus on good or bad uses of robots and on the individual rights of elderly people to proper care. It easily falls back on false dichotomies between cold machines on the one side and warm human care on the other (cf. Pols 2012: 25). We are not users standing outside technologies that serve as instruments; we are “bodies in technologies” (Ihde 2002: 137). As our doing and perceiving is mediated by technology, humans and technologies become “companion species,” “partners [that] do not precede

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the relating” (Haraway 2008: 17). Identity, therefore, is not about who we are as different from robots but about who we are ‘becoming with’ robots and who people with dementia will and can become with their robot companions. In A Cyborg Manifesto, Haraway (1991) argued that embracing technological enhancement, both in the imagination and as lived reality, liberates women from associations with nature that lock them into a problematic unified category and induce their cultural disparagement. People with dementia suffer a similar fate. The dominant medical model portrays dementia as consisting in a specific set of symptoms and following a determined order of steady decline (Kitwood 1997: 1). In this way, dementia is naturalized and people with dementia are identified with their disease. As a result, different social material contexts in which the disease develops and individual life stories that show people with dementia as unique persons are ignored. Let us suppose for a moment that robots could become sophisticated enough to assist a person with dementia in her daily life in intricate ways; that they become sensitive to lapses in memory a person may suffer while engaged in activities and able to respond to these; that robots can recognize visitors and remind a person not just of their name but also of the history shared with them; that robots can support feelings of self-worth; that they, as pictured in Robot & Frank, can accompany a person outside her home and assist her participation in social life and pleasurable challenges: Could people with dementia in this as yet imaginary future escape from the social death so often suffered today? Would dementia become an inconvenience, easily mended by technology, the way in which glasses support people with impaired vision and keep them from being seen as less capable than people with acute sight? Though this vision has exhilarating potential, it is too simple for three interrelated reasons. Firstly, in a lucid interrogation of the promises of technology to bridge gaps between disability and normality, Moser (2006) shows how these promises actually hide the social-material shaping of disability. The considered normality is not questioned. Secondly, and more specifically, technology’s promises as they surface for instance in promotional discourses ignore the work that goes into living with technology. This work would be more complex in the case of robots than the small rituals of keeping glasses clean and secure so familiar to

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people with spectacles. If we assume for now that people with dementia would be capable of performing their share of the work of living with a robot, the arrangement in which their ‘as-if-normal’ identity is constituted becomes invisible. At the same time, it is also hidden how ‘enabled’ or ‘normal’ lives depend on specific social-material arrangements (ibid.: 387). Technologies following a compensatory logic within “an order of the normal” (ibid.: 374), Moser warns, re-enforce distinctions that they serve to bridge. A third point follows from this. Technologies and the arrangements in which they function are being developed within a specific cultural environment. Ideas on what counts as normal and stereotypes that characterize abnormality easily find their way into processes of design. Akrich refers to this as the “inscribing” (1992: 208) of a vision of use and of typical users – or “script” – into technical objects. Stereotypical and constraining scripts “stabilize, naturalize, depoliticize” (ibid.: 222) existing identities and relationships by inscribing them materially in society. Although technologies are structurally “multistable” (Ihde 2002: 106) and ultimately receive, partly unforeseen, meaning in concrete user practices, how use is preconfigured is not innocent. It is to be expected then that images of people with dementia that dominate our culture today set the constraints within which the future identity of people with dementia in companionship with robots can take shape. I now turn to the imagined arrangements of assistive robotics as they emerge in news reports on two recent robot projects. Which identities are anticipated and in that pre-constructed?

ACTIVE

ROBOTS AND DISAPPEARING PATIENTS The two projects in focus are financed by the European Union under the 7 th Framework Programme-ICT and involve research and business partners from various European countries. CompanionAble, coordinated by the University of Reading (UK), ran from January 1, 2008 to June 30, 2012 while Giraff+, coordinated by Örebro University (Sweden), started on January 1, 2012 and ran until February 25, 2015. The robots also share some formal characteristics. Both are devices on wheels and have a screen instead of a face for interaction with functions built into the robot and for telepresence applications, such as videophoning. Hector, as the CompanionAble robot is called, also has eyes, placed above the screen, but these are

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not active. Both robots work in cooperation with a smart-home environment that helps the robot navigate and supports the monitoring of health and safety. As the representatives of the integrated system, the robots facilitate interactions with the system by a more social interface. The same audio-visual interface supports interaction with formal and informal caregivers. In case of video calls, the face of the caller occupies the screen. As a result, especially in the case of Giraff+ which does not have its own face, this person remotely occupies the robot’s body. Some applications allow navigating the robots from a distance and scan the environment by a builtin camera. For the collection of news articles, I used the database LexisNexis for international and Dutch language news, supplemented by internet searches on both projects and on key terms like ‘robotʼ and ‘dementia̕ . The news items found all deal with the pilot phase of the robots in the Netherlands and Belgium (CompanionAble) and Scotland (Giraff+). Articles often repeated ideas, either because they had the same author or apparently followed press releases. I eliminated obvious copies. In the end, 16 articles were left on CompanionAble, twelve in Dutch and four in English, and 31 on Giraff+, 28 in English and three in Dutch. I compared these with 23 articles found on service robots and elderly people in general, published between 2008 and 2013. References to people with dementia in these did not diverge significantly from the main sample. Processes of framing give news items their general structure. News frames “highlight some aspects of the events behind a story and downplay others, often with the effect of supporting a certain way of looking at the worldˮ (Baresch, Hsu, and Reese 2011: 637). Frames point to the shared “set of cultural ideas, values and expectations about social roles” (Van Gorp and Vercruysse 2012: 1279) that journalists as well as researchers, practitioners, and audiences fall back on, often unthinkingly. Here I am not interested in frames as such, but in how they set the stage on which the identity of people with dementia as companions to robots appears. I will sketch the three main frames detected and the identities they enable. The future is here Stories under this frame focus on the science fiction character robots are assumed to have for the general public. They emphasize that robots are really happening and mention some striking tasks, such as detecting emer-

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gencies or meeting a person actively for reminders or instant care contact. Little is mentioned within this frame on how well – or badly – robots perform these tasks. Also ignored is the work demanded to secure the robot’s functioning. Monitoring and distance care presuppose caregivers checking data and being on call. Reminders need to be entered into the robot’s software. Vital questions on who will do this work and who decides how it is done are ignored. Instead, the robot is presented as an intelligent, independent, and unproblematic solution. When persons with dementia are referred to in this frame, it is often with a note of surprise that people who are generally considered the oldest and least capable are associated with technological innovation, normally the domain of younger generations and masculine power. The main role ascribed to them in relationship to the arriving robots is passive acceptance. Their response is phrased in terms of emotions – instead of argument – as not being frightened or “alarmed” (O’Neill 2013: 27) by the robots. One article mentions enthusiasm. Yet, the person with dementia interviewed, the only one found in all articles, makes clear he does not need the robot, thus distancing himself from the assumed frailty of potential robot-users (cf. Dohmen 2013: 6; cf. Neven 2011). This frame is closely related to a second, which is familiar from other news on dementia (Van Gorp and Vercruysse 2012: 1280). Faith in science Basting refers to this frame as tragedy with “science as the white knight” (2009: 39). In this frame, dementia is portrayed as a problem so vast it can only be solved by scientific breakthrough. The medical model of dementia determines this frame, leaving no place for discussing the resilience or coping strategies of individuals. However, in the case of robotics, the problems addressed by science are ambiguous and some room for other identities emerges. A minority of reports refer to dementia, seen as a brain disease, as the problem. Echoing alarmist notes in the CompanionAble brochure that people with dementia will “deteriorate rapidly” (Badii 2008) if left without cognitive stimulation, robots are portrayed as therapeutic devices that help delay the inevitable decline. Other articles identify the problem robots solve as actually living with the disease. Robots enable a situation otherwise

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impossible, somewhat vaguely designated as ‘independent living.’ I will discuss this as a separate frame below. A third and main problem discussed is care, both on a macro and micro level. On the macro level, reports reflect messages on elderly care mentioned above that label people with dementia as a major threat to existing health care systems. On the micro level, robots are claimed to solve the burden of actual caregiving by monitoring acute and gradual changes in health and safety and by facilitating care at a distance. As Kenner (2008: 267) argues, the emphasis on people with dementia as in need of constant checking and behavior management confirms the medical model. This is more a matter of the “political economy of careˮ (ibid.: 254) than of monitoring technology as it is actually being used today, which communicates both risk and personal rhythms of living and coping (Kamphof 2013: 131). In news articles, coping is assumed where the importance of the home for orientation is mentioned, but it is not made concrete. Instead, risk is emphasized. Giraff+ specifically is consistently presented as a device that allows caregivers to monitor people potentially out of control: The Giraff is simple to use. It is kept in the home of the person with dementia, and the controls for the robot are with the person’s relative or carer. The relative could call into the robot to effectively waken it up, and the person with dementia wouldn’t have to do anything at all. The caller’s face would appear on the screen, and the caller could then navigate the robot through the home of the person with dementia to check that all is well, check medication has been taken, food has been eaten, the person has washed and dressed or just to provide reassurance or have a chat. (Munro 2013: 19 [own emphasis])

The last two options in this often repeated quote are obviously less important than all the checking that is enabled and that suggests basic daily activities as quite likely in disarray. In the identification of care as the problem, another problematic picture of people with dementia looms. Care is seen as the task of caregivers; care tackles problems and abnormalities. This picture is confirmed by phrases announcing that robots are “to be placed” (O’Neill 2013: 27) or “put in the homes of dementia patients” (Munro 2013: 19) in which the health care system and its representatives are the active party. A more generous notion of care, suggested by Tronto, as “everything that we do to maintain, continue and repair our ‘world’ so that we can live in it as well as possible” (1993: 103) includes people with dementia as engaged in care. It insists, too, that care is reciprocal and, whether engaged with things or living be-

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ings, always involves response. This brings me to the third frame, in which people with dementia potentially appear as maintaining their lives, instead of being objectified as care problems to be solved by others. Independent living In this frame, robots are portrayed as supporting people with dementia on a daily basis. The image of people with dementia aging at home alone disrupts the reiterated reduction of dementia to a state of total dependence in our culture. What this means, however, hardly gets more content than ‘not having to move into residential care.’ Often it receives a negative spin, again, as in the frequent remark that robots not just enable social contact but “ease loneliness” (“Remote Control Robots” 2013: 16). It is not brought up how contact could be initiated by people with dementia, nor is there any mention of the potential telepresence technology entails to partake in meaningful activities from a distance or to connect self-help groups.2 When activities that robots support are mentioned, the emphasis is on reminders for taking medicine and keeping care appointments or on activities allegedly part of a healthy life such as taking walks or, occasionally, visiting social events. News on CompanionAble suggests that people with dementia are capable of such a life but lack the initiative. The robot is presented as a motivator who “confronts” (Zuithof 2013: 14) people. No mention is made of robots supporting hobbies or cooking, other than that they offer cognitive training and may warn when stoves are left on. In short, identities of people with dementia as they emerge in relation to robots in popular news tend to confirm stereotypes of people with dementia as disappearing subjects. A picture of people with dementia as involved in care in and around their home remains mostly implicit. The invisibility of people with dementia as persons engaged in life is confirmed by the fact that the active voices in the articles, with one exception, are researchers or health care managers. There is no reference to tensions entailed in the idea of a semi-autonomous robot supporting human independence. In other words, the potentially intrusive character of the envisioned robots in one’s life and home remains undiscussed.

2

The corporate website of Giraff+ (http://www.giraff.org/care-recipients/?lang =en) that addresses elderly people in general as potential buyers does mention how a person can operate the robot in their own homes.

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IN CRIME By contrast, intrusion is the starting point of the story told in Robot & Frank – as can be fathomed from the scene sketched at the beginning of this essay. The movie presents itself as a reflection on the future of elderly care. A series of pictures of real robots in development shown during the credits confirms this. The narrative focuses on how the antagonism called up by Robot’s entrance into Frank’s life gives way to comradery. This story line suggests an alternative overall frame in comparison to the idea of people with dementia as passive, disappearing persons in relation to active smart robots that emerges in news reports: It presents Frank and Robot as partners. In Robot & Frank, reflection through comedy – obviously geared at a wider audience – leads to an open, questioning mode that escapes unambiguous identification of specific frames espoused. However, in my analysis, I will follow three main themes discussed above: the person with dementia as passive recipient of active robot-care, care as the – controlling – activity of others, and living independently. Newspaper articles, being short and informative messages, do not have the same richness in meaning that movies can display. My main interest though is not the comparison of these two different types of stories as such, which would be unfair. I am interested in what they tell us about how the identity of people with dementia in companionship with robots is pre-configured at present, as well as in some alternatives indicated by the movie on the three points mentioned. The central question addressed in the news reports and in Robot & Frank is how to organize elderly care. The movie portrays Frank as increasingly forgetful while his two children struggle to deal with this since Frank refuses to go into residential care. But the disagreement between his son that introduces Robot – “a robot is just as humane as a human caretaker and more efficient” – and his daughter – “he abandoned you with a machine” – forms a sideline to the main tale about Frank’s companionship with Robot. To explore the latter, which will be my main focus here, the movie is situated in an imaginary near future where the current trials of robot development have been comfortably solved. No robot existing today comes close to the capabilities of Robot in Robot & Frank. Upon walking into the house, Robot, whose outward appearance is modelled on the Honda company’s Asimo (cf. http://www.asimo.honda.com), starts cleaning, cooking, and taking out garbage like a perfect housekeeper. Conversing fluidly, it just as

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immediately takes charge of Frank’s diet, health, and wellbeing. In the face of this technological miracle, Frank, however, is all but passive. Broken hierarchies As mentioned, the story of Robot and Frank begins in struggle. Because the entry of Robot and its program “to monitor and improve [...] physical and mental health” is seen from Frank’s perspective, Robot appears as an annoying know-it-all intruder. That Robot represents pressures from a larger cultural context is made clear by its repeated explicit reference to its ‘program,’ which serves as a parody of current widespread ‘successful,’ ‘healthy,’ and ‘active aging’ rhetoric (cf. Aceros, Pols, and Domenech 2014: 1f). The content of the program of healthy normality inscribed in Robot is not criticized explicitly. Instead, the movie addresses the hierarchical relationship it assumes between Robot and a person like Frank. From the beginning to the end, the relationship of Robot and Frank is portrayed as one of negotiation. As the narrative progresses, the bantering of the first scenes makes way for comradery but never vanishes completely. Getting somewhat accustomed to Robot’s company, Frank discovers that he can use Robot to pick up his earlier, long-abandoned life as a cat-burglar. Robot initially opposes Frank’s plans as risky, but more because they break rhythms of day and night than for moral reasons. This funny disjunction between medical and criminal morality in Robot’s program raises questions about the self-evidence of the former. Subsequently, active and healthy living becomes the object of give and take. Robot makes Frank promise that in return for its involvement in picking locks and scanning safe combinations, Frank will stick to a low sodium diet without complaint. Cheerfully they embark on a number of burglaries together and Frank comes to life again, witty and resourceful, at the same time becoming more daring in his courting of the local librarian. A highlight of their interaction is when Robot enthusiastically compliments Frank on his mental and physical progress: “Planning this burglary was a great idea.” Who cares? Although care is the story’s central concern, Frank is not objectified as a problem to be solved by others, whether robot or human. The care that emerges from the movie does have a gender bias. Oddly, the story ignores the fact that a robot butler also makes a person passive. The burglaries

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Frank and Robot engage in are typically male and out of the home projects and leave one to wonder what the story would have looked like had Marie been its main protagonist. Also, of Frank’s children, it is his daughter who at some point returns home to release him – in her view – from the clutches of a machine. Still, Frank is shown as involved in care in a wide sense. He patiently teaches Robot how to case potential sites of burglary and also begins to care for Robot emotionally. In the portrayal of the protagonists’ companionship, Robot & Frank diverges from two trends in robot movies that derive their excitement from humanizing robots and picturing them as increasingly autonomous beings. In the end, robots either become jealous of humans and turn against them, as in Westworld (1973) or Blade Runner (1982), or they serve humans in regaining their own humanness as in Short Circuit (1986) or Wall.E (2008). By contrast, Robot & Frank, a true buddy movie, portrays human-robot companionship as reciprocal manipulation but also mutual transformation. The movie insists that the terms of exchange are not the same. While Frank becomes attached to Robot the way humans do, treating Robot somewhat as a son, Robot’s care resides in the sophistication of its program. It repeatedly reminds Frank that it is just a machine, yet it is a machine that increasingly opens to Frank’s specific being. Which care? Raising the question of proper care, Robot & Frank challenges the dichotomy between cold machines and warm humans. Frank’s daughter is shown to be at least as meddlesome a caregiver as Robot was in the beginning. While she appears insensitive to Frank’s true needs and being, Robot and Frank at that point in the story are faring just fine together. When Frank fears Robot might report their illegal activities to his son, Robot assures him that securing trust belongs to its program. Thus the path is cleared for Frank to shape his life the way he and Robot can agree on and to pursue a socially subversive identity as a master thief. The movie ends in a technophobic mode. Chased by the police, Robot insists that Frank clears Robot’s memory that contains the last evidence against them. Frank refuses as this would entail erasing his own recollection of the events and also the comradery that made him live to the full again. Eventually he complies. With Robot confiscated by the police, Frank moves into residential care. However, while Robot without memory be-

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comes an empty shell, Frank, despite his increasing dementia, remains a person. His family is seen to visit him, while the Ave Verum Corpus of the Catholic Eucharist sounds. The ‘true body’ of care, the scene seems to say, is the human family. However, bathed in sunlight and all smiles, the suggested redemption is so much over the top that it can also be read as a parody on the celebration of the family in other movies on dementia (cf. Chivers 2011: 98). That leaves the options open: Which companionship do we prefer? Which fits most with a person’s life and identity?

CONCLUSIONS : WHOSE ROBOT AND WHOSE IDENTITY ? News reports cover only a part of the possible functionalities of robots. They reflect tendencies in our society to choose some options over others with regard to people with dementia. Robots presented as smart and active, compensating for mental decline, repeat stigmas of people with dementia as disappearing subjects. Following Moser’s (2006) argument that a compensatory logic in technologies threatens to reaffirm existing distinctions between disability and normality, we can see how reminder and activation programs built into robots confirm the cognitivist bias in our culture that co-shapes dementia as a disability in the first place. News items on robots hardly consider the work that would support disabled people to live as-if independently and as-if spontaneously active. Though compensation is not always bad – specific applications could enable people to continue desired engagement in ordinary daily activities – it hides that normality, too, is not independent. Who does not use aids for reminding? Who does not need others for practical and emotional support? The ‘normal’ identity that imagined robots support – an autonomous subject, in control and leading an active life – instead appears as natural and the only right way to live. Also hidden is the fact that a sedentary, consumerist lifestyle is probably the actual norm in the Western world, though arguably not the ideal. Moreover, the hierarchical structure in which ‘normal’ identities are pushed on people with dementia is not addressed. Neither is the work discussed that the functioning of robots requires – nor who decides on it. In contrast, the movie Robot & Frank makes clear that Robot carries a program into the house of Frank and invites reflection on it. When we actually consider the envisioned program and what appears to count as legitimate activity for people with dementia, interesting tensions emerge. Activities stimulated by imagined robots, besides reminders to keep care

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appointments, tend to be explicitly connected to successful and healthy aging, such as physical exercise or mental training. Ignored are ordinary tasks that robots could make possible by walking people through processes of cooking and caring for oneself, home, pets, and friends. News items suggest that activities people with dementia employ spontaneously are surrounded with danger that necessitates checking and control. Here especially, Robot & Frank provides an important counterpoint. The dissident identity that Frank articulates with Robot’s support, though it is not entirely new for Frank, nevertheless points to the neglected possibilities in the current technological imagination: possibilities unimagined in the current configurations that dominate robot development, possibilities that emerge out of the lives of people with dementia themselves, with and without their condition. This brings me to the core question posed by Robot & Frank: Whose robot is being envisioned and whose identity? While Robot is open to become Frank’s robot, news reports picture potentially paternalistic robots that serve as instruments of control. These imagined ‘personal service̕ robots threaten to undermine the personhood of vulnerable people by affirming stigmas, objectifying them as problems, and infantilizing them by ‘confronting’ them with their failure to meet standards of healthy normality on a daily basis. Imagining ‘person-centered’ robots instead demands that we discuss how robots can, for instance through telepresence and active support with daily tasks, strengthen and help build sustaining networks, and how they can celebrate identities as yet unheard of. As Robot & Frank suggests, creating these identities lies not only with society, pursuing normality, but also with persons like Frank – and let us add Marie – and their robot companions.

R EFERENCES Aceros, Juan C./Pols, Jeanette/Domenech, Miquel (2014): “Where is Grandma? Home Telecare, Good Aging and the Domestication of Later Life.” In: Technological Forecasting & Social Change 93, pp. 102-111. Alzheimer’s Society (2012): “Dementia is a Global Health Timebomb – Global Health Expert Professor Peter Piot” (http://www.Alzheimers .org.uk/site/scripts/news_article.php?newsID=1169).

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Akrich, Madeleine (1992): “The De-Scription of Technical Objects.” In: Wiebe Bijker/John Law (eds.), Shaping Technology/Building Society: Studies in Sociotechnical Change, Cambridge: MIT Press, pp. 205-224. Badii, Atta (2009): “CompanionAble: Integrated Cognitive Assistive and Domotic Companion Robotic Systems for Ability and Security” (http:// www.companionable.net). Baresch, Brian/Hsu, Shih-Hsien/Reese, Stephen D. (2011): “The Power of Framing: New Challenges for Researching the Structure of Meaning in News.” In: Allan Stuart, The Routledge Companion to News and Journalism, New York: Routledge, pp. 637-647. Basting, Anne D. (2009): Forget Memory: Creating Better Lives for People with Dementia, Baltimore: Johns Hopkins University Press. Blackman, Tim (2013): “Care Robots for the Supermarket Shelf: A Product Gap in Assistive Technologies.” In: Ageing & Society 33/5, pp. 763781. “Britain Unprepared for Tsunami of Dementia Patients.” (2012) In: Independent, September 16. Chivers, Sally (2011): The Silvering Screen: Old Age and Disability in Cinema, Toronto: University of Toronto Press. Dohmen, Hub (2013): “Robot zorgt goed voor Jean.” In: De Stentor, September 12, p. 6. European Commision (2013): “Active and Healthy Ageing” (http://ec. europa.eu/digital-agenda/en/news/active-and-healthy-ageing-you-you). Hamrell, Harald/Levan, Adin (2012): Real Humans [Äkta manniskor], Sweden: Sveriges Television. Haraway, Donna J. (1991): “A Cyborg Manifesto: Science, Technology, and Socialist-Feminism in the Late Twentieth Century.” In: Donna J. Haraway, Simians, Cyborgs and Women: The Reinvention of Nature, New York: Routledge, pp. 149-181. --- (2008): When Species Meet, Minneapolis: Univers. of Minnesota Press. Ihde, Don (2002): Bodies in Technology, Minneapolis: Univers. of Minnesota Press. Kamphof, Ike (2013): “Samen werken: Over mensen en dingen in zorgnetwerken.” In: Ethische Perspectieven 23/2, pp. 124-136. Kenner, Alison M. (2008): “Securing the Elderly Body: Dementia, Surveillance, and the Politics of ‘Aging in Place.’” In: Surveillance & Society 5/3, pp. 252-269.

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Kitwood, Tom (1997): Dementia Reconsidered: The Person Comes First, Buckingham: Open University Press. Moser, Ingunn (2006): “Disability and the Promises of Technology: Technology, Subjectivity and Embodiment within an Order of the Normal.” In: Information, Communication & Society 9/3, pp. 373-395. Munro, Alistair (2013): “Robots to Look after Dementia Sufferers in Their Own Homes.” In: Scotsman, July 6, p.19. Neven, Louis (2010): “‘But Obviously Not for Me’: Robots, Laboratories and the Defiant Identity of Elder Test Users.” In: Kelly Joyce/Meika Loe (eds.), Technogenarians: Studying Health and Illness Through an Ageing, Science, and Technology Lens, Chichester: Wiley-Blackwell, pp.157-168. O’Neill, Lalita (2013): “Robots Will Transform Lives of Lonely Old Folk.” In: Express, July 6, p. 27. Pols, Jeannette (2012): Care at a Distance: On the Closeness of Technology, Amsterdam: Amsterdam University Press. Paterson, Mark (2010): “Electric Snakes and Mechanical Ladders: Social Presence, Domestic Spaces, and Human-Robot Interactions.” In: Michael Schillmeier/Miquel Domènech (eds.), New Technologies and Emerging Spaces of Care, Farnham: Ashgate, pp. 107-128. “Remote Control Robots to Ease Loneliness of Dementia Sufferers.” (2013) In: Daily Telegraph, July 6, p. 16. Schreier, Jake (2012): Robot & Frank, London: Momentum Pictures. Sparrow, Robert/Sparrow, Linda (2006): “In the Hands of Machines? The Future of Aged Care.” In: Mind and Machines 16/2, pp. 141-161. Sharkey, Amanda/Sharkey, Noel (2012): “Granny and the Robots: Ethical Issues in Robot Care for the Elderly.” In: Ethics and Information Technology 14/1, pp. 27-40. Tronto, Joan C. (1993): Moral Boundaries: A Political Argument for an Ethic of Care, London: Routledge. Van Gorp, Baldwin/Vercruysse, Tom (2012): “Frames and Counter-Frames Giving Meaning to Dementia: A Framing Analysis of Media Content.” In: Social Science & Medicine 74, pp. 1274-1281. Zuithof, Martin (2013): “Rijdende robot houdt dementiepatiënten in beweging.” In: Intermediair, February 19, p. 14.

The zero-degree of dementia Thinking the gap between subject and substance E LANA C OMMISSO

Over the past decade, calls to ‘think,’ ‘think differently,’ and ‘think again’ about dementia have resounded with increasing frequency and intensity (cf. Hachinski 2008; Hughes 2011; Leibing and Cohen 2006). In its various iterations, the term ‘dementia’ traverses all forms of social, economic, intellectual, and political discourses, from the private domain, at familial and inter-personal levels, to the global public arena. Whether in the form of governmental strategies, health care initiatives, scholarly work across various disciplines, consumer products and social movements, or literary, filmic, dramatic, and other cultural works, there is literally a global investment in (making sense of) dementia. Unsurprisingly, some of the momentum propelling these efforts and their corresponding initiatives is underpinned by anxieties about the quality of life experienced by persons with dementia – that ‘hideous debilitating condition’ – as well as a generalized panic about how already taxed social and health care systems will be able to accommodate the steady increase in the number of people with dementia as baby boomers continue to age (cf. Prince et al. 2013; Wortman 2012). These statistical projections, coupled with social attitudes and professional discourses conditioned by what the philosopher Michel Foucault referred to as neoliberal technologies of governmentality and the biomedicalization of aging, and indeed of ‘life itself,’ drive a will-to-science-as-cure (i.e., screening, prevention, new consumer products); a demand for control in the

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forms of treatment, capacity-building, and planning initiatives; and, perhaps most importantly, the search for better, more humane and effective approaches to caring for persons with dementia. Notwithstanding the radical shifts in and novel approaches to thinking about dementia that have emerged over the past few decades, there is still a fair amount of discrepancy about what it means to think dementia, and the ‘subject of dementia’ still rests uneasily between semantic and discursive fields. Dementia, it is now agreed, is an umbrella term, used to describe “a syndrome, a collection of symptoms and signs for which there are many causes and which manifests itself in a variety of ways” (Hughes 2011: 13). There are diverse forms of dementia, such as vascular dementia, dementia with Lewy bodies, and of course, most notoriously, there is Alzheimer’s disease. Each of these forms of dementia has distinct pathological features and a different symptomatic profile; yet despite medical science’s ability to draw these distinctions, in many cases persons suffering from dementia have a mix of pathological characteristics and symptoms, and individual components of the pathologies corresponding to different forms of dementia are found to occur in brains of persons who aged ‘normally,’ i.e., individuals showing no symptoms of dementia. This scientific indeterminacy further complicates what we mean or understand when we are talking about dementia and/or persons with dementia. As Julian Hughes succinctly puts it: “[D]ementia throws up a number of particular clinical, ethical, and conceptual problems which mostly reflect evaluative decisions, for instance about diagnosis and the difference between normal and abnormal ageing” (ibid.: viii). Though the problems to which Hughes points are inextricable, grappling with the forms of thought, or, to use Hughes’ terms, the ‘evaluative decisions’ which belie these problems, reveals that, whether from a scientific, clinical, or ethical perspective, there is a fundamental conceptual slippage instantiated by the subject of dementia. That is to say, to date, dementia and the experiences of persons with dementia have been conceptualized either from materialist/empirical (neurobiological) or idealist/ socio-symbolic (transcendental, phenomenological, semiotic) theoretical perspectives; in some cases the subject of dementia becomes enmeshed in an infelicitous yoking together of the two perspectives. However, as Hughes’ clinically and ethically illuminating tome Thinking Through Dementia (2011) indirectly points out, when considering the subject of demen-

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tia at the conceptual level, most of these perspectives fail, on their own terms, to offer an adequate account of the way in which the materialist and/or socio-symbolic dimensions of dementia come together or interact in and as (the experience of) the subject of dementia. Furthermore, upon closer scrutiny, it becomes apparent that these conceptual failures or slippages tacitly inform – and are then reproduced by – clinical and ethical discourses and practices related to persons with dementia. This raises two questions. First, why? Why does the subject of dementia resist conceptualization, from both traditional materialist and socio-symbolic perspectives? Second, and relatedly, what type of (theoretical) discourse or perspective might, on its own terms, offer a thoroughgoing, conceptual account of the subject of dementia? In an effort to sketch out answers to the questions raised above, the core of this paper offers a Foucauldian genealogy of the prevailing biomedical and social science conceptualizations of dementia, which have informed social, cultural, ethical, and political discourses around the ‘subject of dementia’ over the course of the 20th and early 21st centuries. Specifically, the paper will tease out what remains ‘unthought’ and/or disregarded in these conceptualizations in an attempt to begin to see why and show how the subject of dementia resists conceptualization. In light of some of the conceptual lacunae and related discursive shortcomings uncovered in the conceptual genealogy, the paper then turns to contemporary dialecticalmaterialist theories of subjectivity proferred by the continental philosophers Catherine Malabou, Adrian Johnston, and Slavoj Žižek and explores whether, or what, these theories might contribute to offering more conceptually robust figurations of the subject of dementia. Specifically, the paper considers how dialectical-materialist theories of subjectivity might complement – and even offer new directions for – rethinking and reconciling the dominant biomedical and social science discourses dedicated to thinking about and/or representing dementia. My interest here is in pushing the theoretical boundaries of current discourses in dementia studies; however, not at the expense of disregarding that dementia and persons’ experiences of dementia pertain to far more than speculative conceptual issues. Thus, before turning to the core of this paper, one likely objection is worth forestalling: that purely conceptual and in particular dialectical-materialist accounts of subjectivity, when applied to persons with dementia, not only appear to totalize the experiences of per-

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sons with dementia, but also threaten to disregard the singular and multifaceted actuality of each person-qua-sentient, situated, living being, and their corresponding agency and moral status. I hope to demonstrate that on the contrary, even seemingly abstract and overly theoretical conceptualizations of subjectivity can add new dimensions to our understandings of persons in the world, which necessarily account for the multiplicity of factors that come together to constitute persons’ experiences of dementia, and thus contribute to broadening current discourses on clinical practice and ethics in dementia studies.

A BRIEF HISTORY

OF THINKING DEMENTIA

Dementia as disease A well-rehearsed story about the recent history of dementia studies goes something like this: Though the term ‘dementia’ and the corresponding notion of cognitive impairment have been in use since at least the mid-18th century, it was not until the 19th century that cognitive impairment was quantifiably demonstrated and that dementia gained “scientific respectability” (Berrios 1987: 836). Yet, demonstrable pathology or not, dementia was predominantly, if not exclusively, regarded as a ‘normal’ part of aging or ‘senility,’ a term which, in the late-19th and early-20th centuries, was generally used in a disparaging sense to mean weakness and/or a pathological state (Katz 1996: 41). By the late-19th century, senile dementia literally meant a ‘being out of one’s mind,’ brought about by weaknesses or pathology in organic brain matter. Thus, despite new scientific findings, because of long-standing socially accepted views about the normalcy of senescent degeneration, the pathology of senile dementia and persons with senile dementia garnered limited interest, both from scientists and society at large (Holstein 1997: 6). In 1906, when the German neuropathologist/clinical psychiatrist Alois Alzheimer described the case of one of his patients, Auguste D., at a conference of German psychiatrists, the biomedical concept of dementia-quadisease first emerged. Mrs. D. was a middle-aged woman suffering from memory loss, disorientation, depression, and hallucinations; during postmortem examination of her brain, Alzheimer found pathological changes such as atrophy, lesions in the region of the cerebral cortex, and neurofibrillary tangles (Mauser et al. 1997: 1546). These forms of pathology, which at the time were not commonly found in the brains of persons with senile

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dementia at autopsy, and Auguste D.’s relatively young age, were taken as indices that her condition could be distinguished from senile dementia, i.e., a normal (pathological) feature of aging. By extension, and perhaps more importantly, the correlation between abnormal behavior and pathology in the case of Auguste D., warranted the nosological classification of Alzheimer’s as a psychiatric disease (AD) in its own right (Holstein 1997: 4). Following Alzheimer’s initial findings, however, researchers who went on to study the disease found it difficult to distinguish the pathology of AD from the normal pathology of senile dementia. Nevertheless, Alzheimer’s as a discrete disease category persisted, despite being questioned by certain researchers, among them Alzheimer himself (George et al. 2011: 421). Further evidence demonstrating the congruency between Alzheimer’s findings and pathological characteristics of both senile dementia and the brains of older adults who did not display symptoms of dementia continued to be discovered over the following decades, reinforcing the questions of whether Alzheimer’s was in fact distinct from senile dementias, why persons who had brain pathology were not symptomatic, and why persons could be symptomatic who had little to no pathology. Indeed, these inconsistent findings have continued to be replicated in various studies throughout the 20th and 21st centuries (cf. Snowdon et al. 1997; Lock 2005; Hachinski 2008; Whitehouse and George 2008; D’Alton and George 2011). As the medical anthropologist Margaret Lock remarks: “[T]hese paradoxes immediately raise the question of the ontological status of Alzheimer’s disease [and other dementias]. What is it, and where exactly does it reside?” (2005: S53) In the mid-1930s, the nosological discrepancies of the disease model and the general idea that senile dementia was a normal feature of old age began to be questioned by some American psychiatrists. A new conceptual model of dementia that viewed it as the result of a “dialectical interplay between biological, social, and psychological forces” was developed and “age-associated dementias” were brought “into the mainstream psychiatry of the time” (Ballenger 2008: 497). The major proponent of this model was the psychiatrist David Rothschild “who began his career trying to resolve the anomalous findings concerning the pathology of AD” (Ballenger 2006: 47), only to eventually stop investigating the brain altogether. This socalled biopsychosocial conception of dementia placed the “locus of senile mental deterioration” (ibid.: 58) in society and not in the organic matter of

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the brain, raising the question of how social experiences produced brain pathology. However, this question was never fully pursued and the biopsychosocial conceptualization of dementia and the therapeutic approaches to dementia care to which it led were short-lived. By the 1960s and through the 70s, new technological developments, increasing life expectancy, and newly iterated neoliberal political and economic discursive configurations resulted in a shift in social and scientific perspectives about aging and disease. On the one hand, the aged body came into view as an object of knowledge constituted by the medicaltechnological gaze and, on the other, older adults became a discernible population in need of social and political administration (cf. Katz 1996). The inadvertent result of these new formulations and figurations of old age and the aged was the reemergence of Alzheimer’s-qua-disease (cf. Ballenger 2006) as the paradigmatic form for thinking about senile dementia. Thus, despite shifts in the status of aging persons and perspectives about old age that had taken place in the decades following World War II, the questionable nosological conceptualization underpinning AD was resuscitated in tandem with a new neurologically inflected biomedicalized discourse of old age. Dementia as subjective experience By the early 1980s, as Carol Estes and Elizabeth Binney (1989) demonstrated, aging and old age had fully emerged on the stage of public discourse as socio-demographic, economic, and biomedical problems. That is to say, the aging subject was discursively constructed as a threat to social stability and innately deficient, which gave way to a series of professional and social praxes and discourses for and about older persons as subjects in need of treatment, management, cure, and intervention (cf. ibid.). These praxes and discourses functioned as, in Althusserian terms, ‘ideological apparatuses,’ which doubled as technologies of control and surveillance that determined views and treatments of, and care for persons with dementia. In 1989, the sociologist Karen Lyman reprimanded social gerontology for failing to recognize the ways in which the subject of dementia had come to be fully disciplined by and through medico-political discourses and practices. “Medical control,” Lyman explained, is exercised over the demented person by medical practitioners, paraprofessionals, and family caregivers as well [….]. For example, physical and chemical restraints

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are still commonly used […], dependency is encouraged and acts of independence are either ignored or punished. (1989: 602)

As the fundamentally dehumanizing conditions of treatment for persons with dementia began to be questioned, the nosological problems with the biomedical concept of dementia as brain disease were raised once again. However, these problems were primarily raised in terms of the question of how to change clinical and ethical practices vis-à-vis persons with dementia. Work by philosophers and psychologists such as Tom Kitwood, Steven Sabat and Rom Harré, and the social worker Elaine Brody was fundamental to the new conceptualizations of dementia which began to emerge in the late 1980s and continue to inform discourses about the subject of dementia today. Despite gross generalizations about the loss of mind, and by extension of self, experienced by persons with dementia, which were pervasive in biomedical and social discourses, well into the 21 st century, what Kitwood or Sabat and Harré, amongst others, were able to demonstrate was that in various ways, individuals with dementia retained a sense of self throughout the trajectory of their disease course. Further, they showed that individual experiences of dementia were not reducible to brain pathology alone. Rather they argued that what Kitwood termed ‘malignant social psychology’ or social and psychological processes or interactions also impacted an individual’s sense of self and wellbeing and could either help sustain or, conversely, deprive them of their personhood. In complement, Brody’s work drew attention to the fact that institutional cultures, discourses, environments, and practices contributed to ‘excess disability,’ that is, functional disabilities experienced by persons with dementia in excess of what pathology alone might cause (cf. Brody 1971). Thus, by the mid1990s, dementia was increasingly beginning to be conceived in terms of the subjective experience of a person constituted by the interplay of a multiplicity of interpersonal, biographical, environmental, psychosocial, and biological factors, a perspective not unlike the one offered by Rothschild and his colleagues in the 1930s (cf. Harré 1991; Kitwood 1990; Sabat and Harré 1994). Seeing the experience of a person over and above the pathology undoubtedly incited new ethical and clinical perspectives for thinking about and understanding dementia. These perspectives, moreover, entail preemptively recognizing that meaning and experience, and an individual’s sense

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of personhood and their forms of self-expression and reflection are fundamentally intersubjective and multifactorial. Among other things, what this perspective has successfully opened up is an enduring space for thinking about care in therapeutic terms, that is to say, considerations of how forms of care and related care contexts and cultures can work to improve and preserve the quality of life of persons with dementia. The person-centered approach to dementia and in particular Kitwood’s own social-psychological theory of dementia care have had an inestimable impact on changing research agendas, on cultures and practices of care, and on social attitudes and values about persons with dementia. So much so that, as Hughes notes, despite the persistence of the disease-model, one would be hard pressed to find any clinician or scientist that conceives of dementia in purely biological terms (Hughes 2011: 127). Likewise, in various national guidelines and advocacy pieces, dementia is described from both biomedical and social perspectives (ibid.:14). The importance of this turn in thinking about dementia is not to be understated; however, what is left unthought as a result of this perspectival shift also warrants consideration. To a certain degree, the conceptual problem raised by the subject of dementia as a relationship between brain pathology and subjective experience became secondary as the person-centered approach to thinking about dementia grew in prominence, and was relegated to the natural sciences, where once again it was (and still continues to be) predominantly framed in mechanistic, reductionist, and deterministic terms. In its attempt to bring the subjective experience of dementia to bear on how we think about dementia, it is almost as if the person-centered turn in dementia studies cleaved the question of how to think the subject of dementia, which indirectly resulted in the emergence of two epistemic paradigms in dementia studies, one neuroscientific and nosological and the other social and ethical. Moreover, both paradigms are grounded in discrete and intractable ontologies, neither of which adequately account for the conceptual problem of dementia. Thus, by the end of the 20th century, the subject of dementia stood squarely in what the philosopher Slavoj Žižek calls a parallax gap: “the confrontation of two closely linked perspectives between which no neutral common ground [synthesis or mediation] is possible” (2006: 4).

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The parallax of dementia Taking a closer look at Kitwood’s work helps to understand the current status of and approaches to thinking about dementia. Rather than dismissing the biomedical model out of hand for purely clinical or ethical reasons, Kitwood systematically addressed the disease model’s conceptual failings. In his earliest articles on the topic of dementia, he demonstrated that the biomedical model or ‘the standard paradigm’ for thinking about dementia was empirically insufficient, because the correspondence between “the degree of dementia (as measured by behavioural and psychometric indices) and the extent and type of neuropathic change found post mortem are far less strong than seems commonly to be assumed” (Kitwood 1989: 2 [original emphasis]). Thus, Kitwood identified the problem of the ontological status of dementia. His critique, however, is particularly nuanced. In addition to underlining the nosological issues with the biomedical concept, he also pointed out a discursive issue with the psychiatric perspective: The “view of the relation between brain and mind that seems to be widely held by psychiatrists in the field is one of strong type-type identity” (ibid.: 3). It assumes that brain states and psychological states directly correspond, though following Kitwood, this asumption is problematic because it does not account for the “differences between psychological and natural scientific types of language” (ibid.), that is to say, their epistemic perspectives. Kitwood’s critique is prescient in that it already anticipates the resurgence of old philosophical debates around the relation of brain and mind, and it reflects ongoing debates in the philosophy of science over the difference between ‘natural’ and ‘interactive’ or ‘human’ kinds (cf. Hacking 1995). Pointing to the irreconcilability of epistemological paradigms which cannot logically be collapsed into one another, Kitwood not only touches upon the ontological stumbling block which dementia poses for the natural sciences (an issue which he does not pursue), he also inadvertently raises a broader question: What kind of discourse or theoretical perspective is necessary to account for the structure of subjectivity, itself? That is to say, how can an empirically satisfactory account of dementia also account for ontological difference (i.e., the difference between being and beings) and vice versa? In Kitwood’s words, the question was “how the psychological and material (neurophysiological-neuropathological) levels are to be brought together into a single framework” (1989: 7). Indeed, how? Cartesian dual-

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ism, he explained was unconvincing, thus he adopted a tailored monist view, underlining that a more comprehensive model, grounded in a monistic view of the mind-brain relationship, must take into account not only the psychological states that correspond to particular brain states, but also both developmental and pathological aspects of the brain. (ibid.: 9)

The point he makes, which contemporary neurosciences confirm, is that “in the brain enduring function gradually becomes structure” (ibid.: 8), thus brain structure in persons with dementia should be understood as having two aspects, one pathological and the other developmental. Kitwood’s “central hypothesis” was that dementia needed to be understood as “a combination of structural damage and functional change in brain tissue, and that the pathology found in the brains of” persons with dementia post-mortem “is not primarily causal, but epiphenomenal or consequential; however,” he stressed that “the presence of neuropathic change itself sets limits to brain function and increasingly so as the condition progresses” (ibid.: 7). Kitwood’s tailored monism is congruent with his view that subjective experience is socially constructed, as well as with neuroscientific evidence about the brain’s plasticity, in particular the ways in which social and lived experiences contribute to the amassing of cognitive reserve. Paradoxically though, the notion of personhood which grounds Kitwood’s theory of dementia care is not conceptually in line with his monistic view of the subject of dementia. That is to say, while Kitwood points to the fact that a satisfactory conception of dementia must account for the material and psychological dimensions of dementia, it follows that the ontological parameters of this conception must also be able to account for the material and psychological dimensions of subjectivity-qua-entity which singularly experiences dementia. Though Kitwood dutifully considers diverse transcendental and materialist accounts of subjectivity as a background to the conception of personhood he espouses, the Buberian inspired transcendental, ethical, and social-psychological notion of personhood he puts forward does not satisfactorily account for the material basis of subjectivity, nor, however, is it asked to. For Kitwood, it was not a matter of proving the particular conception of personhood he espoused valid. “The key point,” he explained, is that “[b]efore any kind of inquiry can get under way in a discipline that draws on evidence, assumptions have to be made” (1997: 12); he further argued

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that forms of practice need to be “logically consistent with an ethic to which one has become committed” (ibid.: 100). Thus, Kitwood’s notion of personhood does not underwrite his theory of dementia; rather, it stands as the unquestioned a priori ethical imperative that grounds his personcentered theory of dementia care (cf. ibid.). The very tension of the parallax is visible in Kitwood’s work; however, he stops short of fully engaging with it and opts for an ethical imperative to anchor his theory of dementia care, leaving in the shadows, or perhaps to posterity, the questions of ontology and ontological difference his conceptual analyses of dementia raise. Ethics and nosology over ontology The two discursive paradigms detailed above still dominate contemporary attempts to think the subject of dementia. In other words, thinking the subject of dementia remains circumscribed by the epistemological confines of discrete parallaxes. Though of course the paradigms are more fluid, and not mutually exclusive, they still never quite come together in a coherent discourse or perspective. While by no means representative of all the existing literature, a quick look at two recent calls to rethink or reconceptualize dementia reveals the subtle ways in which this divide persists. In a frequently cited commentary piece entitled “Shifts in Thinking About Dementia,” the neurologist Vladimir Hachinski pronounces the “[t]he concept of dementia […] obsolete” (2008: 2172). The concept, he argues, combines categorical misclassification with etiological imprecision [….]. Not only do individual sets of criteria fail to work, but none is used universally, precluding comparisons across studies using different criteria. Cognitive impairment is not a threshold, but a continuum, affecting different cognitive domains, at different rates, from different causes. All this occurs on the evolving background of aging. (ibid.)

Though Hachinski takes the biomedical concept to task, he is not calling for a new way of conceptualizing dementia or a discursive reappraisal; rather, he is asserting that scientific methods and terminology need to be more precise and universal criteria for applying nosological subcategories be established. By systematizing approaches and restructuring priorities, Hachinski suggests that “it may be realistic to expect that the mean age of onset of dementia could be delayed by 5 years, potentially reducing the prevalence in half” (ibid.: 2173). Although he certainly points to persisting problems with the biomedical conceptualization of dementia, the shift in thinking he proposes is more a shift in the application of the concept and related inves-

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tigative methods, such that the nosological concept of dementia might still obtain. A key point Hachinski makes, though does not elaborate on, is that cognitive impairment is not a threshold but a continuum, thus opening the possibility of reconsidering the ontological problem posed by dementia, at least in so far as to suggest that dementia unfolds along a temporal horizon and that it is not an unmitigable given. However, intentionally or not, this possibility is foreclosed and it is the questions of construct validity and measurement which are explicitly raised in the statement. Incidentally, despite the frequency with which this article is cited, the standard diagnostic measurement instruments used to assess cognitive impairment, which have noted limitations vis-à-vis validity and reliability, have not changed. The take away here is that: Although there is a sense in which interventions which support cognitive reserve or functional abilities might help to delay the effects of dementia, dementia is still fundamentally conceived as nosologically classifiable, despite the inability to offer an account of its ontology. The counterpoint to Hachinski is Julian C. Hughes, who is also a medical doctor, although a psychiatrist, not a neurologist. Hughes brings a philosophical perspective to his ‘thinking through dementia.’ He contends that a model of dementia that satisfactorily addresses or accounts for the clinical, ethical, and conceptual problems raised by dementia must be able to offer a causal and constitutive account of diffuse neurocognitive disorder. Hughes substitutes the latter phrase for the term dementia, in the hope that it offers more clinical precision and dispenses with some of the stigma attached to the term ‘dementia.’ His point is that any satisfactory account must explain the cause of the pathology and both the experience of persons with the pathology and of those who have symptoms but no pathology. His analysis is painstaking and it moves from biomedical through varying philosophical accounts of mind, brain, and self, to social-constructivist/psycho-social theoretical discourses. At each turn, Hughes aptly demonstrates how the perspective he considers fails to offer a satisfactory account of dementia, either casually or constitutively. Thus, he proposes a Wittgensteinianinspired “broad view of what it is to be a person with dementia,” a conception he calls “the situated embodied agent view (SEA),” which, he contends, “is supported by an externalist view of mental states, which locates the mind in the world, not in the head” (Hughes 2011: viii; cf. chapter 4).

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The perspective Hughes unfolds is far more nuanced and substantial than the gloss I offer here, and indeed it has important clinical and ethical merits. However, the externalist view of mind proposed is rooted in an ethical imperative to see persons and not pathology in the first instance; thus it does not adequately account for the complexity of diverse interactions between the symbolic world and the materiality of the brain. Furthermore, the notion of embodiment it puts forward (based in the works of Merleau-Ponty and Charles Taylor) “still privileges the perceiver’s grasp” (Sparrow and Ackerman 2008: 99) of the material world over and above the ‘ungraspable’ though still affective autonomy of materiality, thus inadvertently denaturalizing the body and depriving it of the force of its affect which is not always already inscribed in or available to the subject of psychosocial experience. Ultimately, the SEA view amalgamates and emends varying perspectives; however, despite the robust phenomenologically inspired account of ontological difference Hughes offers, his conception does not account for the ontology of dementia-qua-material-pathology. Not unlike Kitwood’s perspective, Hughes’ view remains constricted by the (not so subtle) imperative that guides his own evaluative criteria. Once the a priori ethical imperative to value persons supervenes considerations of how the material structure and/or nature of subjectivity is affected by dementia, this account of the subject of dementia remains causally unsatisfactory, despite its constitutive plausibility, and as a result, it misses the constitutive point. Ontologically speaking, the causal (or the material) and the constitutive (or the transcendental) aspects of dementia cannot be discrete; they must be thought as necessarily interrelated and inseparable in order to offer a robust concept of the subject of dementia. Thus we are returned to or rather arrive at the question of what type of theoretical discourse or perspective might, on its own terms, offer a thoroughgoing, conceptual account of the subject of dementia. However, in light of the preceding genealogical considerations, we might attenuate this question and note in advance that this perspective must accommodate both the materialist and transcendental (the symbolic or phenomenal) aspects of the ontological and at least point to how they might come together in the (experience of the) subject of dementia. It is with this stipulation in mind that I now turn to consider contemporary dialectical-materialist theories of subjectivity and explore what they might offer for thinking and conceptualizing the subject of dementia and/as the subject of our neural age.

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Nothingness and/or the transcendental subject In the preamble to her work The New Wounded: From Neurosis to Brain Damage (2012; first published in French 2007), the philosopher Catherine Malabou recounts what she describes as “the ordeal of depersonalization to which [her] grandmother was subjected as Alzheimer’s disease operated on her” (xi). Leaving aside for a moment the numerous concerns one might have about this description, it is Malabou’s pointed use of the term ‘operated’ that invites scrutiny. For Malabou, to whom it seemed that her grandmother “or at least, the new and ultimate version of her, was the work of the disease, its opus, its sculpture,” operating is precisely what dementia does. That is to say, on Malabou’s view, something about dementia has agential and productive capacities which, on the one hand, gives way to an ‘ordeal of depersonalization’ and, on the other, engenders a new, and as we will see, foreign entity. Unsettling as the chatechreses Malabou employs may be, they pale in comparison to the force of the assertions that chase them: Indeed, this was not a diminished person in front of me, the same woman weaker than she used to be, lessened, spoiled. No, this was a stranger who didn’t recognize me, who didn’t recognize herself because she had undoubtedly never met her before. Behind the familiar halo of hair, the tone of her voice, the blue of her eyes: the absolutely incontestable presence of someone else. This other person, however, was strangely absent. (ibid.: xi [original emphasis])

Alzheimer’s disease, Malabou declares, “is not merely a neurodegenerative disorder but also a psychic attack, in the sense that it impinges on the identity of the subject and overturns his affective economy” (ibid.: xiii). Certainly, we can dismiss Malabou’s claims as the speculative ruminations of a philosopher who is perhaps moving too far afield. However, can we completely ignore what, or more precisely how, she is asking us to think about the subject of dementia? Not despite, but precisely because of Malabou’s decidedly speculative conceptualization of dementia – which places subjectivity and the work of dementia squarely in the ‘gap’ between its neurobiological (materialist) and psychosocial (symbolic/transcendental) aspects – might it not be necessary to consider what the possibility of these ‘new wounded’ forms of subjectivity means for notions of personhood and consequently questions about clinical assessment and ethics in dementia studies?

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Appreciating Malabou’s position and understanding what it might offer for thinking the subject of dementia necessitates a more detailed consideration of the dialectical-materialist perspective that informs her theory of subjectivity. Simply put, dialectical materialism refers to the theoretical approach that informs the philosophical projects of Malabou, Adrian Johnston, and Slavoj Žižek, each of which, though in slightly different ways, attempts to offer a robust materialist account of ‘transcendental genesis,’ (i.e., an account of how the transcendental or socio-symbolic horizon of meaning and experience, namely subjectivity, emerges out of the immanence1 of the material world2. There is nothing simple about these projects, although it is worth stating that all three thinkers agree that an account of how the more-than-material world arises out of the material one must necessarily move beyond the stalemate between idealist reifications and materialist reductions of “mind, consciousness, and so on” (Žižek 2006: 167). A detailed examination of the work of Malabou, Johnston, and Žižek is beyond the scope of this paper; thus, what is offered below is an outline of their respective materialist ontologies in so far as they pertain to the problem of thinking the subject of dementia. As Žižek’s relates it, “the basic axiom of today’s materialism is […] the ontological incompleteness of reality” (1999: 60 [original emphasis]), which, he contends, is the possibility for the emergence of transcendental (more-than-material) subjectivity. On Žižek’s view, the more-than-material subject emerges out of/as the incompleteness of substance. What constitutes

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The notion of immanence employed by Malabou, Johnston, and Žižek recalls the Spinozist notion of substance, which is the only mode of being and thus is immanence. However, from a dialectical-materialist standpoint, this notion is modified, through a Hegelian lens, where – contra Spinoza – substance is not conceived in terms of plenitude, rather it is understood to be inherently insufficient, internally discordant, and thus imbued with the force of negativity which drives dialectics. While at face value, there are commonalities between the dialectical/transcendental-materialist theories of subjectivity and current debates on the question of the mind-body-relation in analytic philosophy, the major distinction between these perspectives is that the former conceives of the relation between the material and transcendental aspects of self in Hegelian dialectical terms. On this model, causality is not unidirectional; nor are so-called physical and mental states reduced to a relationship of consonance. Rather, the vital force of self is taken to be a productive negativity, that is to say, the ‘gap’ between mind and body, out of which the fundamentally dissonant and (dialectical) relationship between what Hegel calls ‘subject’ and ‘substance’ unfolds.

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the human being, Žižek contends, is a gap or nothingness, a torsion, a force or site of non-coincidence that manifests in an ‘unbearable negativity.’ Turning to a frequently cited paragraph from Hegel’s early writings, Žižek considers the question of the ‘elementary dimension of subjectivity,’ its zero-level or zero-degree. “Man,” he explains, “is a lack which, in order to fill itself in, recognizes itself as something”; this implies that there is “no positive-substantial determination of man” (Žižek 2006: 44), rather only the act or formal gesture of recognition. Subjectivity, as Žižek sees it, is the perpetual activity of a ‘self-relating-negativity’ which is trying, though never succeeding, to reconcile its constitutive difference or lack. The question, then, is how Žižek understands this lack, that is, subjectivity vis-à-vis its material and more-than-material dimensions. The most pertinent iteration of this account may be found in his consideration of what he refers to as the parallax of neurobiology: “the realization that, when we look behind the face into the skull, we find nothing; ‘there’s no one at home’ there, just piles of gray matter” (ibid.: 7). Clearly, this example needs some fleshing out. For Žižek, neurobiology – specifically the works of Antonio Damasio and Joseph Ledoux – does not offer an adequate account of the relation between the natural and non-natural aspects of self. It fails, as it were, to account for the empty core of our subjectivity: what am I? I am neither my body (I have a body, I never ‘am’ my body directly, in spite of all the subtle phenomenological descriptions à la Merleau-Ponty that try to convince me to the contrary), nor the stable core of my autobiographical narratives that form my symbolic identity; what ‘I am’ is the pure One of an empty Self which remains the same One throughout the constant change of autobiographical narratives. This One is engendered by language: it is neither the Core Self nor the autobiographical Self, but what the Core Self is transubstantiated (or, rather, desubstantialized) into when it is transposed into language. This is what Kant has in mind when he distinguishes between the ‘person’ […] and the pure subject of transcendental apperception which is just an empty point of selfrelating. (ibid.: 227)

What is important about Žižek’s formulation, Johnston explains, is that it outlines how as a result of symbolic mediation, a subject-qua-empty point of self-relating emerges, “which cannot be reduced to either organic matter/ nature or linguistic culture” (Johnston 2010: 84). This is precisely why, for Žižek, “behind the face, into the skull we find nothing” but a (synaptic) gap. On this logic, it is the non-coincidence of the gap itself, which stands as both the causal and constitutive condition of subjectivity.

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Žižek’s position, Johnston reminds us, ought not to be confused with a social-constructivist notion of subjectivity; rather, what Žižek is suggesting is that the chasm between the language-independent Damasian proto-self and the symbolically constructed core self, is mirrored in the core self, thus there is a split internal to the core self-qua-subjectivity, which divides it into “both a plastic avatar of substantial bodily being as well as a faceless blank of desubstantialized negativity” (ibid.: 86). However, on Johnston’s view, Žižek oversimplifies the position of contemporary neuroscience and reduces the debate to naturalist or anti-naturalist formulations of selfhood, overlooking a continuum between the material and more-than-material self, articulated in the works of both Damasio and Ledoux. All three philosophers, as Johnston underlines, “are against any kind of crude, reductive conflation of the category of subject with the register of the merely natural and corporeal” (ibid.: 346). However, contra Žižek, Johnston contends that though a “break with nature” is necessary, for him and Malabou, this break is perhaps not as radical as Žižek might like, because it entertains the possibilities that “non-natural subjectivity remains susceptible to being buffeted and perturbed (or, as Malabou’s ontology of traumatic accidents has it, disrupted or destroyed) by the natural ground from which it originally arises and with which it ruptures” (Johnston 2012a: 22). Thus, according to Johnson, a robust materialist account of subjectivity must not only account for the more-than-material subject but also for the “dialectic of oscillating reciprocal modifications between material immanence and more-thanmaterial transcendence” (Johnston 2007: 5), which continues to take place after the emergence of the transcendental realm from the realm of material immanence. In other words, the autonomy of the natural world, its material affect cannot be fully mediated, but nevertheless exists and affects subjectivity, which is why theories of embodiment which assert the unity of the self, ‘à la Merleau-Ponty’ as Žižek puts it, miss the point. For Johnston and Malabou, the dialectical relationship between the material and more-than-material, or the productive ‘negative’ possibility of the insufficiency and incompleteness of the material, is not only mirrored in the self-relating negativity of the subject, it remains immanent to materiality and continues to affect more-than-material subjectivity. Thus, Johnston’s own theory of transcendental genesis departs from the notion of what he calls a ‘weak nature.’ Drawing on Lacan and Hegel to support his claim, Johnston demonstrates how what Lacan describes as “intra-organic dis-

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cordance” proper to the human organism, in particular the neurologically and physiological immature neonate, is in fact a “privative/negative cause, one with ontological standing both real and material, necessary for helping to set in motion the trajectory running from natural substance to more-thannatural subjectivity” (2012b: 29). According to Johnston, what Lacan refers to as the “congenital gap presented by man’s real being in his natural relations” (2012a: 335) calls forth from within itself non-natural mediation. Thus, nature conceived as ‘weak nature’ offers as a contingent material condition of possibility, the cracks and fissures of elbow room for the immanent transcendence of nature by Spirit qua more-than-material autonomous subjectivity still embedded in, but not governed by, its physical ground(s). (ibid.)

In neurobiological terms, it is precisely because the brain is kludgy (here Johnston borrows the metaphor from the neuroscientist David J. Linden), “shot through and permeated with antagonisms, conflicts, deficiencies, fissures,” that it is a “physical version of negativity,” a “materially generated disharmon[y]” (Johnston 2012b: 49). These dialectical dynamics, Johnston argues, “permit speculating that the movement from animal to human organism transpires when growth in the natural complexity of animal organism crosses a certain tipping point” (ibid.: 50). Thus, his materialist ontology rests on the twin premises that nature is ‘weak’ nature, which calls for its own transubstantiation, though not denaturalization, and that material substance in its very insufficiency, as a ‘version of’ negativity, continues to interact with and affect subjectivity. Subjects in the wake of their own absence We can now return to Malabou, whose materialist ontology considers a different moment in the subject’s story of itself: How one form of subjectivity gives way to or is supplanted by another, through the contingent possibility opened up by an accident-event. Such accidents – wholly unexpected, external forms of violence, such as natural catastrophes, brain damage, and even forms of socio-symbolic violence – cannot be ‘known’ in advance by the subject; further, they sunder neuronal connections and in so doing, on Malabou’s view, they obviate the possibility of transcendence. Thus, the question, for Malabou, is what kind of being comes into the world when faced with such destructive, meaningless external violence? Her

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answer: “a new being,” a being which emerges “out of the wound, or out of nothing, an unhitching from what came before” (Malabou 2012b: 2). This being or form of subjectivity, Malabou argues, no longer partakes of being-in-the-world, there is no engaged embodied – in her strong sense of the word – existence for this subject; she is detached, indifferent, neutralized. The “new wounded” have no history; they are, as Malabou explains, “existential improvisations” (ibid.). The new wounded, she asserts, demand a wholly new discourse, which is why in her work the dialecticalmaterialist perspective gives way to the ‘ontology of the accident,’ which relies on two fundamental premises: First, the brain is plastic. This plasticity, however, is both productive and destructive. Second, following Damasio and LeDoux, Malabou subscribes to the notion that cerebral activity is coordinated by physiological affects, which are not consciously represented but nevertheless underlie and are the very stuff of cerebral auto-affection. This auto-affection, moreover, needs to be understood as a process that unfolds from instant to instant, in the form of synaptic connections; the brain is constantly remodeling itself; it is “fundamentally temporal” (Malabou 2012a: 44). On this logic, cerebral auto-affection reveals that the brain is finitude itself. Departing from the premise that the brain produces affective nonconscious states through which it reflexively regulates itself, Malabou contends that this auto-affecting reflexive brain activity is a mode of preservation. That is, the brain and body in a direct relationship (through feedback loops) are working to keep the organism alive. For Malabou, the brain is – and exists in and as – the very anticipation of its own destruction (ibid.: 133), and when presented with the accident-qua-lesion, this autoaffecting life force of the brain is permanently disrupted, resulting in the affective paralysis of indifference and detachment. The accident impinges upon a subject in such a way that the very substantial core of the subject disaffects, foreclosing the brain’s auto-affective possibility and leaving nothing. This ‘nothingness’ out of which the new wounded emerge is not the same ‘productive’ nothingness of negativity inherent in nature, but its obverse. When we think of brain plasticity, Malabou reminds us, we usually do not think of it in terms of the “negative work of destruction. In neurology, deformations of neuronal connections, breaches in cerebral contacts, are not considered instances of plasticity” (Malabou 2012b: 3). However, she goes on, there is a general consensus that “plastic construction cannot take place without a certain negativity” (ibid.: 4).

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What Malabou is trying to tease out is that plastic production is only possible through operations of distinction and differentiation, which keep the organism as a unified and discrete entity intact. Her point is that the destructive capacity of organic life is the negative condition for its productive capacity, and her work takes up the challenge of thinking the neuronal/ plastic power of this negativity in its non-productive negative possibility. Thus, because the brain is “fundamentally temporal” (ibid.: 44) and the accident arrives in such a way that it forecloses futurity, what remains, Malabou argues, is only negative possibility or disaffection. Which is to say, at least for her, brain damage becomes not the absence of form, but rather the form of absence of any kind of activity, function, or future (ibid.: 17-18). Malabou is critical of neurology and psychoanalysis alike, because neither discourse addresses the existential possibility wrought by destructive plasticity. Neurology, she explains, “insists upon the way in which a brain lesion or traumatic event results in a total transformation of identity” (ibid.: 166); yet, it does not theorize this situation, it simply observes it. Taking neurology to task, Malabou contends that the formation of identity through destruction is simply invoked as a morbid eventuality or a mere lesional possibility and not interrogated as a constant existential possibility of the subject. As soon as the motif of an identity formed through destruction is glimpsed, it is abandoned. (ibid.: 166-167)

For Malabou, it is at this juncture that the dialectical possibility of negativity explodes; there are no more transformations, there is only destruction. In the absence of auto-affection, the new wounded subject emerges as a subject constituted by a wholly new loss, the loss of itself. It is this subjective form of organic ‘devastation,’ which, according to Malabou, psychoanalysis cannot think and neurology refuses to think. Although Malabou is ‘theorizing’ an indifferent subject born of neuronal disaffection, she by no means is indifferent to the human reality she is discussing. As she describes in the example of her grandmother, despite the vacancy of this new foreign subjective entity, there is still suffering. When the psyche survives its own death, which is to say, the disaffection of the cerebral unconscious that can no longer protect itself against its own fragility, some foreign entity remains standing in its wake. “Could it be,” Malabou wonders, that the brain suffers? Could it be that this suffering manifests itself in the form of indifference to suffering? In the form of the inability to experience suffering as one’s

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own? Could it be that there is a type of suffering that creates a new identity, the unknown identity of an unknown person who suffers? (ibid.: xii)

That the new wounded are suffering is the very problem which drives her theoretical endeavour. Her point is that this suffering needs to be conceptualized and adequately ‘articulated.’ And that this philosophical ‘task’ forces us to recognize that indeed, the new wounded “call responsibility into question” (ibid.: 213-15), and that we need to respond. This response, however, needs a new form adequate to the traumatized subject to which it is addressed, which is beyond any currently existing perspective, be it neurology, psychoanalysis, or even a social-constructivist/embodied selfhood position. This response, then, might come in the form of an ethics unfolded out of the ontology of the accident as the unanticipated possibility which, whether from a Žižekian, Johnstonian, or Malaboudian perspective, places us face to face with the negative possibility of being.

C ONCLUSIONS : T HINKING THE

ZERO - DEGREE OF DEMENTIA What does a dialectical materialist perspective offer for thinking the subject of dementia? First, because – at least for Johnston and Malabou and perhaps to a lesser degree Žižek – there is a determinate reciprocal link between the autonomous materiality of the brain and subjective experience, this perspective offers a theoretical discourse proper to the very paradoxical ontological status of dementia-qua-pathological entity and its unpredictable expressions. Is this theory perfect? Certainly not. However, it unfolds a new horizon for thinking the materiality of the subject of dementia precisely as such, as a form of subjectivity which cannot be adequately conceptualized by a discourse that does not account for the mutual implication of the material and symbolic realms and their respective and collective fragility. To put it differently, it is one thing to see plaques, tangles, and lesions. It is another to understand how this pathology works on the brain’s systems, which systems need to be viewed as always already transcendentally inscribed, though not denaturalized. Finally, it is a wholly other thing to conceive of subjectivity in its constitutive fragility and negativity, as always (dis-) affected by trauma, whether cerebral or psychic. From a dialecticalmaterialist perspective, it is clear that a causal account must also be a constitutive account; there cannot be a distinction between the phenomenal experiential world and its immanent material conditions. Further, if, follow-

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ing Hachinski, dementia-qua-pathology needs to be discerned along a continuum of cognitive impairment, then we must be able to think about it temporally and in terms of the temporalities and forms of finitude it affects. Thus, why not offer this account in properly Hegelian dialectical terms, that is to say, in terms of both the possibility of negativity and negative possibility as the operative dialectic or zero-degree of being, which the operations of dementia lay bare. Whether as a contingent intrusion from the outside or internal to the very structure of subjectivity, dementia unfolds as a process between subject and substance. If we understand the relationship between subject and substance as one fundamentally constituted by a gap, then how do we understand the pathology of the dementias as working in and through this (traumatic) gap? In what ways might some of the questions about brain resilience and cognitive reserve, e.g., about the mechanisms which underlie neuronal compensation, or whether the brain posseses neuroprotective mechanisms (cf. Barulli and Stern 2013; Steffener and Stern 2012), be reframed in terms of the relationship between a weak immanent nature and aspects of its negative possibilities, i.e., subjectivity? What if the very plasticity of the brain is such that its non-conscious awareness of pathology creates a disaffecting looping effect in the brain? How are we to understand the relationship between dementia and subjectivity in this light? Likewise, how would a theory of trauma that recognizes the force of affect beyond the social-psychic realm, think about symptoms without pathology? And most importantly, what kind of ethics, or, in Malabou’s words, ‘forms of responsibility’ are called for if we begin thinking the subject of dementia from this perspective? Dialectical-materialist perspectives do not answer all of our conceptual questions; rather, they, too, need some thinking through. But they do offer a coherent perspective from which to begin thinking the conceptual problems ‘thrown up’ by dementia, problems which, as Deleuze might say, continue to present themselves in their singularity and call for concepts and forms of thought which are adequate and uniquely attuned to the complexity of the experiences they express.

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R EFERENCES Ballenger, Jesse F. (2006): Self, Senility, and Alzheimer’s Disease in Modern America: A History, Baltimore: Johns Hopkins University Press. --- (2008): “Reframing Dementia: The Policy Implications of Changing Concepts.” In: Murna Downs/Barbara Bowers (eds.), Excellence in Dementia Care: Research into Practice, New York: McGraw-Hill International, pp. 492-508. Barulli, Daniel/Stern, Yaakov (2013): “Efficiency, Capacity, Compensation, Maintenance, Plasticity: Emerging Concepts in Cognitive Reserve.” In: Trends in Cognitive Sciences 17/10, pp. 502-9. Berrios, German E. (1987): “Dementia during the Seventeenth and Eighteenth Centuries: A Conceptual History.” In: Psychological Medicine 17/4, pp. 829-37. D’Alton, Simon/George, Daniel R. (2011): “Changing Perspectives on Alzheimer’s Disease: Thinking Outside the Amyloid Box.” In: Journal of Alzheimer’s Disease 25/4, pp. 571-581. Estes, Carroll L./Binney, Elizabeth A. (1989): “The Biomedicalization of Aging: Dangers and Dilemmas.” In: Gerontologist 29/5, pp. 587-596. George, Daniel R./Whitehouse, Peter J./Ballenger, Jesse F. (2011): “The Evolving Classification of Dementia: Placing the DSM-V in a Meaningful Historical and Cultural Context and Pondering the Future of ‘Alzheimer’s.’” In: Culture, Medicine, and Psychiatry 35/3, pp. 417435. Hachinski, Vladimir (2008): “Shifts in Thinking about Dementia.” In: JAMA 300/18, pp. 2172-2173. Hacking, Ian (1995): “The Looping Effects of Human Kinds.” In: Dan Sperber/David Premack/Ann J. Premack (eds.), Causal Cognition: A Multidisciplinary Approach, Oxford: Clarendon Press, pp. 351-383. Holstein, Martha (1997): “Alzheimer’s Disease and Senile Dementia, 18851920: An Interpretive History of Disease Negotiation.” In: Journal of Aging Studies 11/1, pp. 1-13. Hughes, Julian C. (2011): Thinking Through Dementia, Oxford: Oxford University Press. Johnston, Adrian (2008): “Slavoj Žižek’s Hegelian Reformation: Giving a Hearing to The Parallax View.” In: Diacritics 37/1, pp. 3-20.

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--- (2010): “The Misfeeling of What Happens: Slavoj Žižek, Antonio Damasio and a Materialist Account of Affects.” In: Subjectivity 3, pp. 76-100. --- (2012a): “‘Naturalism or Anti-Naturalism? No, Thanks – Both Are Worse!’: Science, Materialism, and Slavoj Žižek.” In: Revue internationale de philosophie 3, pp. 321-346. --- (2012b): “Reflections of a Rotten Nature: Hegel, Lacan, and Material Negativity.” In: Filozofski Vestnik 32/2, pp. 67-81. Katz, Stephen (1996): Disciplining Old Age: The Formation of Gerontological Knowledge, Charlottesville: University Press of Virginia. Kitwood, Tom (1990): “The Dialectics of Dementia: With Particular Reference to Alzheimer’s Disease.” In: Ageing and Society 10/2, pp. 177-196. --- (1997): Dementia Reconsidered: The Person Comes First, Buckingham: Open University Press. --- (1989): “Brain, Mind and Dementia: With Particular Reference to Alzheimer’s Disease.” In: Ageing and Society 9/1, pp. 1-15. --- /Bredin Kathleen (1992): “Towards a Theory of Dementia Care: Personhood and Well-Being.” In: Ageing and Society 12, pp. 269-287. Lock, Margaret (2005): “Eclipse of the Gene and the Return of Divination 1.” In: Current Anthropology 46/S5, pp. S47-S70. Lyman, Karen A. (1989): “Bringing the Social Back In: A Critique of the Biomedicalization of Dementia.” In: Gerontologist 29/5, pp. 597-605. Malabou, Catherine (2012a [2007]): The New Wounded: From Neurosis to Brain Damage, New York: Fordham University Press. --- (2012b [2009]). Ontology of the Accident: An Essay on Destructive Plasticity, Cambridge: Polity Press. Maurer, Konrad/Volk, Stephan/Gerbaldo, Hector (1997): “Auguste D and Alzheimer’s Disease.” In: Lancet 349/9064, pp. 1546-1549. Prince, Martin/Bryce, Renata/Albanese, Emiliano/Wimo, Anders/Ribeiro, Wagner/Ferri, Cleusa P. (2013): “The Global Prevalence of Dementia: A Systematic Review and Metaanalysis.” In: Alzheimer’s & Dementia 9/1, pp. 63-75. Snowdon, David A./Greiner, Lydia H./Mortimer, James A./Riley, Kathryn P./Greiner, Philip A./Markesbery, William R. (1997): “Brain Infarction and the Clinical Expression of Alzheimer Disease: The Nun Study.” In: JAMA 277/10, pp. 813-817.

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ACKNOWLEDGEMENTS We would like to thank everybody who supported the development of this volume from the very first ideas in Berkeley to the final production stages in Bielefeld. A special thank you goes to all our reviewers for dedicating their time and expertise: Agnes Andeweg (Maastricht), Jesse Ballenger (Drexel), Philippe Cappeliez (Ottawa), Amir Cohen-Shalev (Haifa), Elana Commisso (London/Ontario), Wim Dekkers (Leuven), Sarah Falcus (Huddersfield), Daniel George (Drexel), Baldwin van Gorp (Leuven), Anna Goulding (Newcastle), Solveig Lena Hansen (Göttingen), Heike Hartung (Potsdam), Pia Kontos (Toronto), Jojanneke Korte (IIRLR), Karin Lövgren (Umeå), Elizabeth Marksson (Brandeis), Eric Matthews (Aberdeen), Raquel Medina (Aston), Anika Mitzkat (Mainz), Masako Monooka (JACE), Aynsely Moorhouse (NICE), Kathrin F. Müller (Münster), Louis Neven (Twente), Steven R. Sabat (Georgetown), Silke Schicktanz (Göttingen), Martina Schmidhuber (Erlangen-Nürnberg), Dominique Somme (IFIC), Bärbel Tischleder (Göttingen), Bernhard Weicht (Innsbruck), John Wiltshire (La Trobe), Peter Whitehouse (Case Western), and Luc de Witte (Maastricht). We would also like to thank Margaret Meredith and Cynthia Port (Conway) for their important support with language and copy editing. In addition, we are very grateful for the support and patience of the series editors, Ulla Kriebernegg (Graz), Heike Hartung (Potsdam), and Roberta Maierhofer (Graz). The production of this volume was funded by the Research Stimulation Fund of the Faculty of Arts and Social Sciences, Maastricht University. We also received a generous printing grant from the Geschwister Boehringer Ingelheim Stiftung für Geisteswissenschaften.

AUTHORS Elena Bendien, PhD, is a social and cultural gerontologist, lecturer and research fellow at the Graduate School of the University of Humanistic Studies in Utrecht, the Netherlands. Elena’s main fields of interest are: ageing and gender studies, the meaning of remembering at a later age, the existential meaning of space at a later age, identity issues in later life, and new technologies of care. Lucy Burke is principal lecturer in English in the Department of English at Manchester Metropolitan University (MMU). Her research in the fields of medical humanities, cultural disability studies and critical and cultural theory explores cultural representations of dementia and cognitive diversity and she has published widely in these areas. She has also worked with broadcasters, film makers, artists and arts practitioners in relation to cultural representations of disability, recent projects include the ‘Human Trouble’ series for Humanities in Public at MMU and research and development on a creative project with people with dementia, ‘The Island’ led by theatre director Liz Postlethwaite. Andrea Capstick leads the postgraduate programs in Dementia Studies at the University of Bradford. She holds a Doctorate in Education for her work on the use of film and narrative in practitioner education. John Chatwin is a Research Fellow in the School of Nursing, Midwifery, Social Work and Social Sciences at the University of Salford. His PhD is in Communication Studies and he is a professional film-maker. Elana Commisso is a Doctoral Fellow in the Enhancing the Care of the Older Adult Clinical Research Group at the Toronto Rehabilitation Institute. She is currently completing a doctoral thesis on the Collège de Sociologie at the Centre for the Study of Theory and Criticism at the University of Western Ontario, in which she explores the coincidence of the prehistory of contemporary dialectical materialism and a ‘minor’ tradition of moral theory in twentieth-century French thought.

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Yvonne Cuijpers has a background in Philosophy of Science Technology and Society (MA, University of Twente) and has worked on research projects about system innovation in animal husbandry and alternatives for animal testing. Currently, she is affiliated with Utrecht University where she is preparing a doctoral thesis on the subject of responsible early diagnostics for Alzheimer’s Disease. Lisa Folkmarson Käll is Associate Professor of Theoretical Philosophy and Research Fellow in Philosophy of Medicine and Medical Ethics at the Centre for Dementia Research and Department of Philosophy, Linköping University, Sweden. She is currently working on a project on intercorporeal sharing and alterations of self-experience in age-related dementia. Käll is editor of Dimensions of Pain (Routledge 2013) and co-editor of Feminist Phenomenology and Medicine (SUNY 2014) and of Stil, Kön, Andrahet. Tolv essäer i feministisk filosofi (Style, Sex, Otherness: Twelve Essays in Feminist Philosophy) (Daidalos 2010). Marlene Goldman, Professor of English, teaches Canadian Literature in the English Department at the University of Toronto. She is the author of Paths of Desire, Rewriting Apocalypse (University of Toronto Press 1997) and Dispossession: Haunting in Canadian Fiction (McGill-Queen’s Press 2011). Her current book-project is entitled Forgotten: Narratives of AgeRelated Dementia and Alzheimer’s Disease in Canadian Literature and Film. Oliver R. Hautz (Dipl.-Kfm./Dipl.-Ger./PhD), received his degree in Business Administration from the University of Erlangen-Nürnberg and his degree in Gerontology from the University of Heidelberg. In 2013, he finished his PhD in Social Gerontology at Miami University, Oxford, Ohio. Currently, Hautz is working as an instructor at the Hochschule für Technik und Wirtschaft des Saarlandes (htw saar) in Saarbrücken, Germany. Sonja Iltanen, fashion designer, Doctor of Arts, has studied industrial clothing design, ageing and dementia in three research projects at Aalto University (Helsinki, Finland). For further information, please see https://sites.google.com/site/sonjailtanen/.

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Julia Inthorn is a Research Fellow at the Department for Medical Ethics and History of Medicine at Goettingen University Medical Center. She holds a Doctorate in Philosophy and her current research focuses on risk information and decision making in medicine. Sanna Inthorn is Senior Lecturer in Society, Culture and Media at the University of East Anglia. The focus of her current research is on the role of the media in identity formation, including civic identities, age, and national identity. Her publications include From Entertainment to Citizenship; Politics and Popular Culture (with John Street and Martin Scott, Manchester University Press 2013), Citizens or Consumers?What the Media Tell Us about Political Participation (with Justin Lewis and Karin Wahl-Jorgensen, Open University Press 2005), and German Media and National Identity, Cambria Press 2007). Ike Kamphof holds a PhD in philosophy from the Institute for Philosophy in Leuven (Belgium). She is Assistant Professor at the Faculty of Arts and Social Sciences (Maastricht University). Her research, which combines phenomenology with ethnography, focuses on identity, embodiment and techno-moral change in networks of care. She published on nature conservation and dementia care. Irmela Marei Krüger-Fürhoff, PhD, is Professor of German Literature at Freie Universität Berlin, Germany (Institut für Deutsche und Niederländische Philologie and Friedrich Schlegel Graduate School of Literary Studies). She publishes on 18th-21st century literature with a focus on the interrelations between literary and medical knowledge. Her most recent book publication is Verpflanzungsgebiete. Wissenskulturen und Poetik der Transplantation (Munich 2012) on the poetics and history of knowledge of transplantation surgery in literature, film, and public discourse. Naomi Kruger is a writer, researcher, and Associate Lecturer at Lancaster University (UK). Her novel, May, was written as part of a PhD in English and Creative Writing at Lancaster, and the research was funded by the AHRC. Her short stories have been published in various literary journals. Current research interests include narratology, fictional representations of cognitive impairment, and the interface between creative/critical writing.

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Annette Leibing is Professor of Medical Anthropology at University of Montreal, Canada. Her research interests cover topics mainly related to aging, including specific illnesses such as Alzheimer’s or Parkinson’s disease, but also medications, psychiatry, stem cells, among others. Part of her research is located in the so complex and colourful realities of Brazil. Katherine Ludwin holds an ESRC-funded PhD on Heteronormativity from Birkbeck College. She has worked on research studies related to decision-making in dementia and participatory video in long term social care. Marie-Christine Nizzi, PhD in Philosophy, former student of the Ecole Normale Supérieure. PhD candidate in Psychology, Harvard University and Lille III University. Mark Schweda holds a PhD in Philosophy. He is Postdoc at the Department of Medical Ethics and History of Medicine at the University Medical Center Göttingen and Fellow at the Lichtenberg Kolleg/Göttingen Institute for Advanced Study in the Humanities & Social Sciences. His research interests comprise philosophical, bioethical, and sociocultural aspects of aging and the life course as well as questions of political philosophy. Scott Selberg is a Postdoctoral Fellow in the Michigan Society of Fellows and an Assistant Professor of Communication Studies at the University of Michigan. He earned his Ph.D. in Media, Culture, and Communication from New York University and his MA in Communication Studies from the University of North Carolina, Chapel Hill. His research interests include media and cultural studies, bioethics, historiography, and visual culture. Aagje Swinnen is an assistant professor at the Center for Gender and Diversity of Maastricht University. She has published on the representation of age and gender in literature, film, and photography as well as on cultural approaches to dementia care in journals such as The Gerontologist, Journal of Aging Studies, and Dementia. In the Aging Studies series, Swinnen has previously published the volume Aging, Performance, and Stardom together with John A Stotesbury. She is founding member and current vice-chair of the European Network in Aging Studies, and co-editor of the new journal Age, Culture, Humanities.

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Harro Van Lente is Professor of Philosophy of Sustainable Development from a Humanistic Perspective at Maastricht University where he studies the relation between needs and novelty. He is also Associate Professor of Emerging Technologies at Utrecht University where his research focuses on the dynamics of expectations in nanotechnology, hydrogen and medical technologies. Sadie Wearing is Lecturer in Gender Theory, Culture and Media at the London School of Economics and Political Science where she runs the MSc program in Gender, Media and Culture. She has published widely on literary and cultural representations of aging in historical and contemporary contexts. She is co- author (with Niall Richardson) of Gender in the Media (Palgrave, 2014) and co-editor (with Evans et al.) of the Sage Handbook of Feminist Theory (Sage 2014). She is a member of the Feminist Review editorial collective, where she is currently editing a special issue on Frailty and Debility (Issue 111, October 2015).