Dementia and Subjectivity / Demenz und Subjektivität

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Introductory Reflections/Einführende Beiträge

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Daniela Ringkamp/Sara Strauss/Leonie Süwolto (Magdeburg/Paderborn)

Introduction/Einleitung

The term ‘de-mentia’ derives from the Latin word ‘mens’ for ‘mind’ and means nothing less than to lose one’s mind. It assumes an understanding of the subject as an animal rationale and suggests that dementia can be defined primarily by a loss of cognitive abilities. That is why, for some authors, dementia may be seen as a kind of antonym to the dominant idea of man’s intellectual efficiency and the idea of autonomy based mainly on reason and the capacity to judge.¹ In contrast to this image of human rationality forming the basis of hegemonic structures in society, dementia reveals ex negativo the normative standards of a meritocracy. The course of the disease, which amongst other symptoms involves the loss of memory and intellectual power and a fading ability to orientate oneself in space and time, poses a serious threat to a knowledge-based society which in our times especially values cognitive abilities and efficiency and establishes the dictum of lifelong learning. Hence, dementia is an ongoing challenge to the predominant idea of man.²

Dementia is known primarily for the loss of memory it causes during its course. Patients first start to forget things in their daily lives until eventually, well-known people become strangers to them. But dementia is not simply a synonym for memory disorder. It implies a variety of symptoms and dysfunctions. We know that dementia is a neurodegenerative disease that often starts years before the first symptoms are recognized by the patients themselves or the people around them. In most cases short-term memory is the first thing affected by the degenerative process. With time the progression of dementia causes impairments of almost all cognitive skills, like attention, comprehension, intellectual capacity, sense of direction, and the ability to communicate orally and in writing. People suffering from ← 9 | 10 → dementia are severely limited in the ability to express themselves. Beyond the fact that a sense of time and space gets lost during the course of dementia, a change of social behaviour is seen in most cases: impulse and control disorders, impairments of mood, disturbed perceptions, and a disrupted relationship with reality are the main symptoms, which are often accompanied by feelings of fear, depression and restlessness.³ As a consequence of these mental impairments late-stage dementia also leads to physical symptoms as the patients can no longer walk, may suffer from diseases or side effects of their immobility or lack of muscle control, and ultimately lose the ability to swallow food.⁴

Normally, the course of the disease is divided into three long-term phases starting with mild dementia, which usually implies light cognitive impairment, and progressing to moderate dementia, followed by severe dementia. Even in the second stage of the disease, the possibilities of independent living are gravely restricted, and in the last phase of severe dementia, patients need comprehensive care.⁵ In a time of double-income households and changing family structures, relatives have to entrust the care of their patients to care facilities, which of course leads to serious social challenges concerning nursing capacities and financial issues.

In our greying society we have to face a rapidly increasing number of people suffering from dementia. The high proportion of old people in our society that is implied by the common expression demographic change has already led to the considerable number of “47 million people liv[ing] with dementia worldwide”.⁶ In Germany, for example, in addition to the current 1.5 million people diagnosed with dementia, 40,000 new occurrences of the disease are recorded every year. Here and in other European countries, such as the UK, the overall number of dementia patients is expected to double by 2050.⁷ Dementia is therefore strongly linked with our image of old age because it serves as a metaphor for the ageing ← 10 | 11 → society and the threat it poses to a community based on a monetary intergenerational contract. Today almost every second person among those aged 90 is affected by dementia.⁸

In fact, the consequences of an increasing number of demented persons are measured and communicated to the public in economic terms and parameters. Like the forecasts of the looming pensions crisis, which are closely connected to the public discussion of the demographic collapse, the discourse of dementia follows an almost apocalyptic rhetoric.⁹ Everyone is probably familiar with the predictions of the crisis in the healthcare sector, the surge in medical expenses and so on. Terms like these, which circulate constantly in the media, seem to cover the existential questions people who suffer from dementia are confronted with as well as the problems their families, friends and relatives are concerned with. Of course, society has to face several serious problems relating to nursing capacities. Yet when observing the public discourse about dementia, it is remarkable that Alzheimer’s disease and other forms of dementia often carry a negative connotation and are regarded as an exclusively medical problem.¹⁰ This is why major parts of the contemporary discourse on Alzheimer’s disease refer to medical categories but ignore the many social, cultural and personal challenges of dementia, not only for society as a whole but also for the patients and their relatives, who often have to redefine their relationships.

The following collection of interdisciplinary essays, by contrast, tries to find another approach to dementia. It intends to respond to the demand for a more open discourse that involves multiple perspectives and moves the topic of dementia and its relevance for society as a whole into the centre of public and academic attention. As Aagje Swinnen and Mark Schweda explain,

[c]ontrasting the dominance of naturalistic, neurobiological and biomedical discourses, dementia studies aims at a better understanding of dementia as a cultural phenomenon. […] Understanding the multiple ways by which dementia, while biologically influenced, ← 11 | 12 → 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.¹¹

In understanding dementia as a cultural phenomenon, the authors in this volume emphasize the relation between subjectivity and intersubjectivity – between the conditions of experiencing dementia from a first-person perspective and from others. In doing so, the contributions also try to create awareness for the intertwined history of the philosophical concept of the subject, which might offer a different view on dementia sufferers. If we understand the subject from the viewpoint of the era of Enlightenment, for example, it may become apparent that the rationalism of the early Enlightenment had been replaced by the middle of the eighteenth century by movements concentrating on the subject’s emotional determination. There has been a long development from the period of Romanticism, with its focus on the irrational and unconscious constitution of the subject, to its postmodern death, which sharpens our eyesight for alternative concepts of a ratio-centered understanding of subjectivity.¹² It can highlight the constructive character of subjectivity and thus disclose the rules of marginalizing and stigmatizing demented persons as rejects of a knowledge-based meritocracy. If constitutive aspects of human existence, like emotionality, irrationality, unconsciousness, dependency, passivity, loss, resignation and fragmentation, were reintegrated into concepts of subjectivity¹³ – like they are in current research approaches – dementia sufferers would no longer be described in terms of deviation. Insights from philosophy and literary and cultural studies can contribute tremendously to this change of perspective.

The aim of this collection of articles from philosophy, literary studies, and cultural studies can be illustrated by several examples. For instance, at the beginning of his autobiographical report about his mother’s disease, the journalist and author Jörn Klare asks her what it feels to suffer from dementia. “Undurchsichtig” – opaque, incomprehensible – she answers, with a clear voice that overrides the strangeness and insecurity she normally experiences when becoming aware of the symptoms of dementia.¹⁴ With this, Klare’s mother, who is in the second stage ← 12 | 13 → of the disease when she makes her statement, marks a mental condition which is not only barely available to herself from a subjective perspective but which also poses great challenges for her family and especially for her two sons. It is not only their mother but also themselves who have to find new ways of communicating and interacting with her. Dementia, it seems, not only alienates the affected patient from his or her former self, it also compels medical practitioners, nurses and the social environment to accept the disease and to respond to a person who may not have much in common with his or her former personality and character traits.

To explain his diseased mother’s situation, Klare takes up the positions of medical experts as well as psychologists, philosophers, attorneys and nursing staff. The contributors to this volume also aim to investigate the mental condition of dementia sufferers from different perspectives. In contrast to Klare, however, they mainly refer to standpoints from literature, arts and the humanities. In doing so, the contributions will especially deal with first-person – subjective – and third-person – intersubjective – approaches to examine the mental state of the patients. This methodological directive implies two important aspects: First, the contributions focus predominantly on the mental and behavioural conditions of the patients and the consequences these conditions entail for their social and personal relationships. Secondly, the social and cognitive implications of dementia will primarily be explored not by medical and nursing issues but by perspectives from literature, philosophy and aesthetics, such as in movies or theatre or with regard to medical ethics. This extensive approach to dementia, which considers both the perspectives of the patients and their social environments, shows that an examination of the conditions and consequences of dementia on a mere neuromedical sphere – which is of course of fundamental importance – is not sufficient: Literary and philosophical examinations do not only point to important ethical questions which arise within the course of the disease; they also formally express the patients’ decreasing ability to speak and to articulate themselves, they provide access to their experience, and they develop fictional and nonfictional strategies which represent ways of dealing with the challenges of dementia from first- and third-person perspectives.

In recent years, narrative representations of dementia have become increasingly important in literature, such as in autobiographical texts,¹⁵ short stories and ← 13 | 14 → other fictional and nonfictional texts.¹⁶ This focus on dementia as one possibility for investigating mental pathologies in literature is accompanied by a series of cinematographic representations, such as Away from Her (2006), a cinematic adaptation of Alice Munro’s short story “The Bear Came over the Mountain”; The Iron Lady (2011); and – probably the most influential one – Still Alice from 2014, for which Julianne Moore won an Academy as the female protagonist. The strategies and aims of literature as well as of the cinematic adaptations mentioned above are complex and multilayered. They provide outsiders with the ability to identify with persons suffering from dementia by portraying their subjective state, their living conditions under the constraints of decreasing mental capacities and disorientation, but also by pointing to the personality and the individual character of the patients, which are still fundamental bases of their identity. A further important subject in literary investigations is a critical examination of the treatment of dementia in society: As with other vulnerable groups, dementia sufferers are in danger of being marginalized. Their disease is often regarded as an unwanted loss of quality of life and – to some extent – is also demonized as a gruesome fate which destroys the core of human existence.

Beyond this, literature not only focuses on the representations and social handling of dementia but also aims at constructing aesthetic interpretations and counterfactual constellations, which introduce ways of interacting with dementia patients in situations that transcend medical responsibility and expertise. In doing so, arts and literature pay attention to patients’ situations but also allow for considering the thoughts and concerns of persons from their social environment, who are in a position to find their own ways of dealing with the disease and interacting with the patient. The first-person perspective of the patient and the third-person perspective of relatives, friends and nursing staff are also reflected at a methodological level, such as in the use of fragmented speech and interior monologues and the verbalization of disruptive thoughts, which are visibly integrated in the typeface of the pages. ← 14 | 15 →

Some of the examples mentioned in literary representations also serve as starting points for philosophical reflections on dementia.¹⁷ Even though philosophy’s interest in dementia is especially pronounced in applied ethics with regard to questions of autonomy and care, challenges of dementia and Alzheimer’s disease in general are also explored in philosophy of mind and philosophy of psychiatry. Contributions in this context often deal with questions concerning patients’ change of identities, their attempts to maintain individual selves, and their struggles with the symptoms of the disease. Do the symptoms of dementia lead to the loss of personal identity, or should they be regarded as new character traits? What is the relation between previous thoughts and preferences and those wishes a patient articulates in a state of severe dementia? And, from a metaphysical perspective, what constitutes the self – is it the subjective mental state, the capacity for diachronic memory in the Lockean tradition, or, on the contrary, is it bodily integration, experiential interests and the emotional involvement of a person in his or her social environment? These aspects of identity theory initiate ethical investigations about the possibilities and limitations of the personal autonomy of dementia sufferers and of prolonged autonomy, nursing issues and adequate care. Even though many of these questions transcend the boundaries of philosophy, several approaches try to formulate conditions for and adequate treatment of these issues.¹⁸ A central point of reference in these debates is the concept of personhood, ← 15 | 16 → understood both in an ontological and ethical framework. Whereas, on the one hand, dementia patients are regarded as “post-persons”,¹⁹ whose mental states are diminished, other perspectives claim a broad understanding of personhood which ignores rational competences and emphasizes emotional as well as experiential capacities, to which the social surrounding should respond.

The different approaches to dementia performed by literature, philosophy, aesthetics and cultural studies converge in several points, some of which have already been mentioned above. There are other aspects which must be noted in this context, such as narrative ethics: Accounts of narrative ethics are not only a frequently discussed strategy in literature as well as in personal identity theory, medical ethics and care – they are also analysed in some contributions in this volume as a possibility to strengthen the potential of dementia sufferers as independent actors. Whereas in contemporary research much attention has been paid to the interconnections between medical, psychological, palliative and nursing questions, comparatively little emphasis has been placed on the conjunctions between the different fields of arts, humanities and cultural studies. By considering topics from Austrian, German, Swiss, Hungarian, English, Canadian and American literature, from film studies and medical ethics, the following volume ← 16 | 17 → aims to strengthen this alternative approach to dementia from an interdisciplinary and bilingual perspective.

The articles in this volume intend to offer new perspectives on questions which are highly relevant in the context of the arts and the humanities. The issues concern, among others, the personal identity of dementia patients, their familial relationships, the opportunities and restraints with regard to advance directives and patients’ autonomy, the question of the legitimacy of paternalistic decisions, and the criticism of patients’ stigmatization due to the disease. The common target that the authors in this volume pursue is to reflect on dementia from the perspectives of different disciplines. They aim at thinking beyond the boundaries of specific academic disciplines in order to bring philosophy and literary and cultural studies into a fruitful conversation about dementia and the challenges it entails for the individual and for society. These disciplines share an interest not only in the topic’s relevance for society but also in its moral implications. Whereas analytic philosophy analyses ethical questions through abstractions, literature conducts ethical enquiries by means of exemplifying individual cases. Selected essays in applied philosophy, for example, examine how far traditional philosophical concepts, such as the concept of ‘personhood’ and its ethical implications, bear relevance for the discourse on dementia. In addition to analysing the aesthetic possibilities of representing subjective experiences of dementia, the articles on literary and cultural representations of the disease examine the potential of dementia narratives to inspire the reader to ethical reflections on moral and social challenges arising from dementia and Alzheimer’s disease. It is through this combination of the abstract and the concrete that the essays intend to stimulate interdisciplinary discussions beyond the medical sphere. The volume thereby aims to contribute to a discourse on dementia that transcends the current debate, which is still strongly dominated by medical interests and insights.

Due to the volume’s interdisciplinary approach to dementia, the following articles are thematically bundled into four topics. Some introductory contributions give insights into the articles’ main focuses, questions and theoretical approaches. The second subject area concentrates on the intersection of dementia and narrativity. It examines how literary representations of the disease and its aesthetic strategies give insights into patients’ subjective experiences, feelings and thoughts and how literature is able to create counterfactual knowledge about dementia and its sufferers, which undermines hegemonic perspectives on the disease and structures of marginalization resulting from this point of view. While the third part deals with media representations of the disease, which – especially in the last few years – have become an indispensable component of the discourse on dementia, the last ← 17 | 18 → part highlights fundamental philosophical issues arising from the controversy over dementia as a field of research.

The Contributions in this Volume

In her article “Lebensgeschichte und personale Identität bei Demenz”, Martina Schmidhuber criticises classic concepts of personal identity in the tradition of John Locke: Accounts which emphasize the importance of reminiscence and of a rational understanding of one’s previous life are incompatible with the symptoms of dementia. Declining mental abilities complicate the performance of those character traits which are, for Locke, necessary for ascribing the status of personhood to an individual. To face this, Schmidhuber points to the biography of the person concerned and to narrative aspects: By re-telling their life stories the diachronic identity of dementia patients can be maintained.

Against the background of long-established philosophical criteria to evaluate personhood, like rationality and self-consciousness, Johanna Zeisberg examines ethical reflections on the criteria of personhood in contemporary American, German and Hungarian fiction. In her essay “Verortungen des Selbst in Demenznarrationen der Gegenwart” she reflects on traditional views on personal identity and strategies of outlining alternative criteria that outlive advanced stages of dementia in novels, autobiographical narrations and short stories by Jonathan Franzen, Péter Farkas, Sibylle Knauss and Ulrike Draesner.

Bettina Rabelhofer’s essay “Ich – das sind die Anderen. Erzählen von Demenz, Alter und Tod” is focused on the significance of intersubjectivity and the ‘other’s’ role in conveying a demented person’s point of view. Regarding examples from contemporary German-language literature, like Arno Geiger’s popular autobiographical narration Der alte König in seinem Exil, she highlights the double transformation of the non-assimilated and non-symbolized mental contents the ‘other’ has to accomplish. While the real communication with the patient has to be managed mentally on the one hand, the content has to be transformed poetically through the aesthetic representation in literature. Rabelhofer assumes that the aesthetic representation of the neurodegenerative disease may be judged ambivalently. Though it intends to give insights into the demented person’s imagination, it might be seen as an artistic exploitation of symbols that may remain inaccurate but are seized upon due to the need for expression.

In her contribution “Zum Verhältnis von Subjektivität und Sprache in Arno Geigers Der alte König in seinem Exil” Leonie Süwolto examines the difficulties the progressing speechlessness of dementia sufferers means to literary representations, especially from a narratological point of view. In terms of postcolonial ← 18 | 19 → theory she offers a critical approach to the role of narrators who often appear as translators of a demented person’s enigmatic perspective in contemporary literature. The significance of translation can be judged critically because it stigmatises dementia sufferers as the ‘others’ of the predominant ratio-based subject. Regarding Arno Geiger’s autobiographical text about his father’s disease Der alte König in seinem Exil the methodological approach allows to unveil the hierarchical order of the demented subject and the narrator who serves as the mediator of an apparently unintelligible perspective. The simulated inner perspective of the demented protagonist in Geiger’s text, which seems to overcome the hierarchical implications of translations, is clearly marked as a generous gesture of letting someone speak for him- or herself. Therefore it reinforces the hierarchical disparity between the patient and the mediator.

Against the background of narrative ethics Sara Strauss’ contribution examines in how far innovative narrative techniques, such as a combination of traditional narrative situations with second person narrative situation and a fragmentation of the narrative, can imitate the disoriented mind of a dementia patient. By analysing Alice LaPlante’s novel Turn of Mind, the article exemplifies how these narrative techniques create narrative empathy with the fictional characters and how literature is thereby able to stimulate the reader to ethical reflections on dementia and the challenges it poses to society.

Elaine Lux’ essay elaborates on the importance of memory for a person’s coherent narrative identity and on the challenges the loss of coherence resulting from memory loss poses to the artistic representation through narrative. Her analyses and comparisons of Alice Munro’s short story “The Bear Came over the Mountain”, Elie Wiesel’s novel The Forgotten and Lisa Genova’s novel Still Alice convey how these narratives meet the artistic challenges effectively. Moreover, in her analyses Lux does not only show how the authors narrate a story that the protagonists can no longer tell but also how, within the fictional world, family members of the dementia sufferers become agents who “treasure[ ] the narrative self for the memory-deprived person” (Lux, 117).

Alexander Schwieren’s contribution draws comparisons between the focus on death and the dead during premodern times and contemporary society’s preoccupation with old age and the elderly. In his article Alexander Schwieren analyses the use of metaphors of death and dying in contemporary literature about dementia. He thereby shows in how far dementia narratives relate to the (mental and imminent physical) absence of the dementia patient and thereby address the transience of human life. ← 19 | 20 →