Introduction

Abstract

The introduction gives an overview on sociopolitical and research-related developments regarding dementia, and attempts explanations for why the interest in dementia of critical scholarship continues to be very limited and particularly focused on caregiver accounts. It illustrates that an understanding of the obvious neglect of dementia patient narratives sheds some light onto the ethical implications and challenges of critically reading such narratives: these narratives seem least of all fit to match classical survivor illness literature, and serious impairment in the ability to tell or understand stories has been taken as motivation to neglect patient narratives. Approaches highlighting the importance of pre-narrative identity and a growing body of psycho-philosophical work demand a closer scrutiny of patient narratives, which would also amplify their author-narrators’ advocacy.

Anyone who has experienced living with this disease as a caregiver or as one who has the disease knows that its effects are devastating. Lives are turned upside down, long-held plans for the future become wistful musings over what might have been, the long-anticipated ‘golden years’ become tarnished with pain, sadness, and irreversible, inexorable loss.¹

Understanding how Alzheimer’s is perceived and represented can help interrupt and change the experience of the disease for those who suffer, those who anticipate suffering, and those who care for its victims.²

As a scientist, I have worked in laboratories where studies are carried out to identify whether individual molecular parameters within specific cells are correlated with the progression of neurodegenerative processes in conditions like Alzheimer’s disease. On one occasion, while blood was being drawn from a patient, I chatted with the elderly lady, who all the while showed herself happily aware of being involved in a research project. I remember an animated exchange, laughter, stories from the past. Later that day, I met her again as she was pushed along the aisle of the outpatient department in a wheelchair. I waved at her, but she looked straight through me. I alluded to our earlier conversation, but she peered at me blankly, asking me for my name. I felt perplexed and I had no idea how to react. A nurse’s call from a nearby examination room ended this encounter.

On my way back home I felt disturbed: how could I have reacted like this? It was as if I had not even considered that the subjects included in such studies, if they were not healthy controls, had a diagnosis like ‘probable Alzheimer’s’. It was as if I had not been aware of the implications of ‘short-term memory problems’. I was researching in the lab all day, but what did I really know about Alzheimer’s disease? I was working on molecular mechanisms underlying the pathogenesis of Alzheimer’s disease. But I had no clue what it was like to encounter, and engage with a patient. I had textbook knowledge and gathered facts from specialised journals. But I had no grasp of how the condition was lived with in daily life. I was exposed to what might be called the cultural mainstream Alzheimer’s narrative that feeds – originating from a medico-scientific dementia discourse – on popular scientific texts and mass media coverage. Indeed, given their intense and continued contact with mainstream-moulding medico-scientific concepts and images, researchers are perhaps even more directly exposed to this mainstream narrative than any other lay person; the term lay person including all those who have not lived the experience of being in the presence of someone with the condition. But what does this mainstream narrative tell? What realities define how the mainstream thinks about Alzheimer’s? And how does all this relate to my encounter?

Alzheimer’s disease is the most common neurodegenerative disorder among the elderly. In view of major demographic changes, it has reached epidemic proportions in the developed world during the last thirty years. More than twenty-six million people suffer worldwide – 1.5 percent of the American population, 1.2 percent of the UK population, and by the year 2050 this number is expected to triple. The condition presents as an early as well as the more well-known late-onset form. Patients afflicted by the early-onset form are as young as forty-five when they are diagnosed, and account for approximately two percent of Alzheimer’s patients. Late-onset Alzheimer’s disease, in turn, is defined as afflicting individuals aged sixty-five years or older. Patients face memory loss, an impaired ability to understand or produce speech and an inability to recognise things or people. Most of all, they are aware that their mental acuity continually declines, and their perception of themselves as individual persons disappears in a relentless process of brain atrophy.³ Regardless of their age of onset, patients usually have five to ten years between diagnosis and death. During this period, they pass through different stages of the condition, with early stages still allowing for the patient’s articulation. Later stages strongly limit intellectual performance, making the patient dependent on caregiving in almost all activities of daily life. Drugs are currently only of limited symptomatic effect.

In the light of such numbers and such constant – and increasing – presence, Alzheimer’s disease has come to embody fears of illness, aging and death.⁴ It meanwhile represents dementia itself; not the neuroscientific description of a specific pathology that is defined in terms of the degeneration and death of specific populations of nerve cells in the hippocampal and cortical areas of the brain.⁵ In direct consequence, the condition no longer stands only for the individual’s profound cognitive decline, increasing behavioural difficulties and substantive memory erosion. It has become a term heavily loaded with stigma, as the cultural mainstream narrative of Alzheimer’s disease centres on fears of caregiver burden, dependence, passivity and vulnerability.⁶

Throughout the 1970s and 1980s, research into Alzheimer’s disease was essentially exclusively the domain of the biomedical sciences. Only following several political decisions during this period, did Alzheimer’s disease begin to gain public attention. In 1974, the National Institute on Aging (NIA) was founded in the United States, making ‘problems and diseases of the aged’ the centre of its funding interest. The NIA’s efforts regarding the dissemination of health information carried Alzheimer’s disease into research laboratories as well as increasing public awareness; the creation of the Alzheimer Disease and Related Disorders Association (today the Alzheimer’s Association) in 1979 and Alzheimer’s Disease International (ADI) in 1984, initiated by Australia, Canada, the United States and the United Kingdom, had a similar effect. Further European countries joined in 1986 and 1987, among them France, Germany and Italy; Spain and Austria followed in 1993 and 1994, respectively.⁷

These sociopolitical and research-related developments led to a quickly rising media attention and interest in dementia. Additionally, an ever increasing number of narratives relating the illness experience provided testimony to the hardship in the confrontation with incremental, chronic and untreatable cognitive decline. The early 1990s brought the patient’s first-person narrative to the attention of a wider audience. J. Bernlef’s Out of Mind appeared in 1988 as the first book-length fictional account consistently told from the patient’s point of view.⁸ Robert Davis’s My Journey into Alzheimer’s Disease was its first book-length Alzheimer’s patient autobiographical counterpart.⁹ Subsequently, in 1993, Diana Friel McGowin’s Living in the Labyrinth attracted international attention to dementia patient accounts.¹⁰ Other publications have followed, though the number of dementia patients voicing their experiences in book-length narratives still barely rises above a dozen. Similarly, the surge of Alzheimer’s disease caregiver narratives commenced only eighteen years ago, when John Bayley’s Iris Trilogy provoked international resonance – certainly enhanced by Richard Eyre’s 2001 movie adaptation.¹¹ That the Wellcome Trust Book Prize has been awarded to an Alzheimer’s caregiver narrative in 2009, and only two years later to a fictional story featuring the condition, signals continued sociocultural concern with the condition.¹²

But the encounter with the elderly lady confronted me with questions whose consideration appeared to be absent from this mainstream narrative, namely, how do patients and caregivers cope with dementia in daily life; how do they experience memory loss; and, above all, how do they negotiate with this very narrative. For this reason I began reading Alzheimer’s disease-related accounts, both fiction and life-writing. These narratives put into perspective my research, for example, with sterile cell culture models. With each narrative I felt the tension between fact and fiction increase. The questions I increasingly asked could less and less be answered by the research I was pursuing; and the ways in which patients in particular told about their illness experience related only partly to the medico-scientific evidence as I studied it, and matched the mainstream narrative very little. Wanting to immerse myself more deeply in these texts, I however noticed how comparatively small the critical scholarship focusing on dementia narrative was. Symptomatic of this phenomenon, Jeffrey Aronson classified Bayley’s memoir as ‘bereavement’ literature in the year 2000, instead of introducing a category like ‘dementia’, and has yet to revise his classification over a decade later.¹³ Also, work on discourse analysis lamented, as recently as 2014, that ‘little research has addressed how people with the condition and their caregivers speak or write of the condition themselves’.¹⁴

This observation underscores my own conviction that dementia narrative continues to be undervalued as a separate body of specific illness life-writing. In view of current major demographic changes, I consider Alzheimer’s disease the illness of stigma and fear. Succumbing or not to memory loss and the threatening consequences highlighted by Steven R. Sabat, Western society is rapidly aging and, as such, will be increasingly confronted with age-related forms of dementia and its identity-threatening consequences on a daily basis. My literary analysis here of dementia narratives attends to the imbalance between the sociocultural and medico-scientific preoccupation with Alzheimer’s disease, on the one hand, and the obvious invisibility of the individuals directly concerned in both humanities scholarship and current policy discussions, on the other hand. In particular, it aims at amplifying the voice and advocacy of patients and caregivers, and critically appraising the poetics and politics of their telling. This approach will complement what Nicole Müller and Robert W. Schrauf term ‘[t]he atomistic, dissociation-focused view of cognitive and linguistic impairment’, whose consequences my own story illustrates.¹⁵ And it will, as Anne Davis Basting suggests, further a necessary understanding of the patient’s and caregiver’s perception of cognitive impairment.

Such an understanding begins with a search for potential explanations for why the literary scholarship concerned with Alzheimer’s disease narratives continues to be very limited and particularly focused on caregiver accounts. Indeed, initially I want to understand how the obvious neglect of dementia patient narratives sheds some light onto the ethical implications and challenges of critiquing such narratives.

Alzheimer’s Disease and Narrative Theory: Is ‘Narrating Dementia’ an Oxymoron?

In her work on Illness and the Limits of Expression, Kathlyn Conway is particularly concerned with the fact that American culture strongly thrives on the idea that ‘anything is possible’. It is weary, she submits, of placing illness per se as well as writing about it into the centre of public scrutiny, since:

The emphasis on youth, physical strength, and beauty not only constitutes a denial of illness and dying but also causes illness to be viewed as anomalous and relegated to the separate world of medicine.

Considering the prognosis of Alzheimer’s disease – that is, its very degenerative chronicity – a narrative of dementia does seem least of all fit to match classical survivor illness literature. Conway explicitly investigates less popular, since non-triumphalist, types of illness narrative that place particular emphasis on otherness through illness. Her critical analysis enhances the reader’s appreciation of the complex relationship between body and mind, and draws particular attention to literature that ‘looks more squarely at the devastating reality of serious illness or disability’.¹⁶

In this context, Conway mentions Arthur W. Frank’s conceptualisation of the ‘chaos narrative’ that mirrors how ‘the storyteller experiences life: without sequence or discernible causality’. Frank himself claims that the ‘[l]ived chaos makes reflection, and consequently storytelling, impossible’. Citing the account of an Alzheimer’s disease caregiver, he states that ‘the story has no narrative sequence, only an incessant present with no memorable past and no future worth anticipating’.¹⁷ As I read Frank’s statement, it lacks a clear distinction between patient and caregiver account and overlooks book-length, coherently told caregiver stories. While I agree that temporal coherence is frequently lacking in patient-authored texts, I still believe their emphasis on significance makes these stories worth telling, reading and pondering.

In his Stories of Sickness, Howard Brody goes even further. He recognises that ‘having a mind that functions in a fairly normal way is a very important part of being a person’, but, in advanced dementia, he continues, ‘there is a common-sense aspect to the assertion that the individual “no longer exists as a person”’.¹⁸ This statement is in line with approaches that locate personhood in memory, suggesting that identity is lost in Alzheimer’s disease, and subjectivity is altered.¹⁹ Regrettably, Brody does not provide an analysis of patient accounts, which in itself underlines that he sees identity in dementia as being impaired.²⁰ His view gains additional support from Paul John Eakin’s work. Eakin deliberates on the importance of storytelling for the creation of identity, and particularly expands on how serious impairment in the ability to tell or understand stories severely impacts on our sense of self.²¹ Similarly, and in reliance on Eakin, Jerome Bruner affirms that ‘the construction of selfhood, it seems, cannot proceed without a capacity to narrate’.²²

All three authors refer to dementia and Alzheimer’s disease as examples of dysnarrativia at a time when several patient-authored dementia narratives had already been published such that these narratives might have accentuated their investigations differently. What is more, recent work on ‘narrative scaffolding in dementia’ suggests that the act of joint storytelling about shared experiences enables patients to maintain their individual identity. In fact, for Lars-Christer Hydén, ‘telling temporally discontinuous narratives does not appear to affect or disrupt the teller’s experience of some sort of continuous sense of self and identity’; rather it affects the person without diagnosis, that is, the caregiver.²³ More linguistically focused studies, in turn, highlight the importance of pre-narrative identity for both patient and caregiver.²⁴

In line with these affirmations, Jane Crisp’s discussion of narratives produced by her cognitively impaired mother is as refreshing as it is reassuring: in introducing external information that serves to elucidate the relevance of specific events in her mother’s accounts, Crisp demonstrates that narratives of Alzheimer’s patients do not only comply with the norms of narrative, but are functional as means for interaction and reconstructing identity.²⁵ In the same vein, recent narrative-based anthropological studies support the notion of coherence in narratives by dementia patients, even in the absence of factuality.²⁶ In addition, neuropsychological and social constructionist perspectives have begun focusing on the analysis of the patient’s embodied portrayal of their condition; psychoanalytical approaches seek to explain anxieties and mental disturbances in old age with unresolved early psychological constellations; and anthropological fieldwork concentrates on the analysis of caregiver narratives with the aim being to reconstruct the patient’s and the caregiver’s inner world.²⁷

These insights and approaches reinforce work that explores the nature of personal identity in dementia through the prism of psychiatry and philosophy. This research importantly claims that patients:

should be treated as wholes, with attention not only to their biology, but also to their psychology, their social and ethical concerns, and the cultural and spiritual aspects of their lives.

In particularly analysing patient narratives, Julian C. Hughes and colleagues come to see patients – even those, who are afflicted by moderate to severe stages of dementia – as able to maintain their feelings of self-worth. Specifically, they profess that:

we need to see the person as a situated human being, who engages with the world in a mental and bodily way in agent-like activities, showing (amongst other things) desires, choices, drives, emotions, needs, and attachments.²⁸

This psycho-philosophical body of evidence criticises the biomedical approach as likely reducing and devaluing the individual it has set out to describe.²⁹ Therefore, a dedicated consideration of the patient’s own as compared to the caregiver’s word and world is necessary, and, in the awareness of the steadily growing number of autobiographical book-length Alzheimer’s disease narratives, most timely. Continuing to neglect patient stories would seem unethical in view of the significant effort patients go to, despite – and since – they are facing their cognitive decline in every sentence they write.

The earliest piece of criticism exclusively focusing on book-published patient narratives (Davis’s and McGowin’s accounts as well as Cary Smith Henderson’s Partial View) aimed at understanding how specific texts ‘worry over and create a sense of selfhood in the midst of its perceived loss’ in the crisis of Alzheimer’s disease. While not addressing patient accounts as literary texts, Anne Davis Basting observes how, especially in early patient-authored texts, the language is ‘cleansed of the disease’, and how narrative form contradicts disease experience. My reading of patient narratives builds on the artist’s analysis of how narrative construction serves as an indicator of disease ‘performance’ or ‘description’, because it will support a more comprehensive understanding of patients’ poetic choices as being politically driven.³⁰ This is especially true, since Basting’s work formed part of the background of important gerontological research by Ellen Bouchard Ryan and colleagues on the ‘lived experience of dementia’ that identified patient-authored narratives as a means to reclaim social and personal identity.³¹

The patient’s as well as the caregiver’s narrative will always give insight into the author-narrator’s perceived difficulties with the condition; the losses experienced and the changes encountered. As such, they may be taken as confirming the stigma and fear existing in society. In setting my own work in the context of these original considerations, I argue that a shift in articulacy is strongly linked to political necessities and indicative of changes in societal notions of selfhood. Acknowledging patient narratives as such lifts the author-narrator onto a different level of authority; an act through which part of this identity-denying stigma is overcome and their advocacy is being heard. No narrative will embody such discernment relating to identity and the ‘disruption of normal meaning-making activity’ more acutely than the patient’s own account.³² If we were to keep overlooking the patient, the current cultural dementia narrative and its bearing on identity would remain solely informed by the caregiver-portrayed conception. In this context, the present work delineates correspondences and discrepancies between the caregiver’s and the patient’s perspective. This approach will illuminate the differences in the perception of identity in dementia. Recognition of the patient’s continued identity, in turn, will impinge on healthcare and socio-economic decision-making as well as on the mainstream cultural image of the condition.

Conscientious Criticism: Mapping My Reading of Dementia Life-Writing

Illness narratives can never be representative of the population of individuals afflicted by a specific condition. This is particularly true in the case of dementia: while the number of patients voicing their experiences in writing barely rises above a dozen, most Alzheimer’s disease narratives are authored by caregivers. Such caregiver deliberations, thus, primarily shape the general public’s perception of the illness. But in the awareness of the previously mentioned serious ethical implications pertaining to the understanding of identity and self in conditions of cognitive impairment, and in the light of the above-discussed implication of perceived dysnarrativia in Alzheimer’s disease, we need to look beyond these caregiver accounts. We are urged to ask, whether they can reliably picture the patient’s situation and world of experience, not least since the caregiver’s agenda, inevitably, differs from the patient’s outlook. We need to ask this question even in the awareness that patients themselves cannot write about their experiences in the final stages of the condition.

For example, Anne Hunsaker Hawkins’s criticism focusing on the mythical conceptualisation of illness experience is highly relevant to a deeper understanding of dementia narrative. Amongst others, the patient’s frequent allusion to their experience resembling a journey deserves close scrutiny for several reasons. According to Hawkins, ‘the journey motif […] restores to the ill person a sense of personal dignity and social value’.³³ At the same time, dementia is terminal and degenerative in nature and as such does, seemingly, not offer a possibility for the patient’s ‘insightful and enriched return’. And the caregiver’s use of the journey myth, by comparison, matches, when for example thinking about Nancy Davis Reagan’s deliberations on her husband’s condition, the formulation of a completely different agenda.³⁴

Set against these reflections, my study compares and contrasts third-person caregiver accounts and first-person patient autobiographies, particularly focusing – following G. Thomas Couser’s example – on the poetical and political questions these narratives raise.³⁵ With respect to the narrators’ aesthetic choices it considers the following issues: what images do narrators appropriate and do they successfully formulate their myths; what narrative plot do they adapt; and how do they draw on established strategies of life-writing to support their telling. In the awareness that such poetic choices not only serve the narrators’ private agenda but also their external presentation, I equally deliberate on how these accounts engage with the culturally dominant Alzheimer’s narrative.

My reading of these texts will draw on narrative theory and work from anthropological and psychosocial sciences, and particularly address, how narrators negotiate with, and aspire to shape, the societal perception of the condition, and how their texts relate to discourses of gender, aging and disability. Ultimately, these reflections are permeated by deliberations on the distribution of power between patients and caregivers. More specifically, carers may well have the highly ethical intention to provide testimony and advice, but overlook – in devising coping strategies in the harsh confrontation with the relative’s losses (about which the patient is no longer able to write) – the patient’s remaining self and identity-affirming abilities. Such partial presentation, as we shall see, conditions the perception of patients as being passive and dissolving; characteristics that are not reconcilable with their own accounts of themselves.

These considerations directly relate to my concerns regarding the morality of ‘regarding the pain of others’, as Susan Sontag would say. Is there not a danger my background in neuroscience pushes my reading of dementia narratives towards being over-influenced by the cognitive limitations of their existentially and intellectually disabled narrators? And does my being removed from caring for an intellectually challenged individual put me in danger of reading these narratives not compassionately enough?³⁶ Such deliberations extend to the choice of texts discussed, not least as an added function of academic critique is – I am paraphrasing Arthur W. Frank here – to amplify voices and to connect them for enhanced strength.³⁷

In view of the very limited number of patient narratives, I am considering accounts in English, French, German, Italian and Spanish literature, offering my own working translations in squared brackets in the running text. In this way, this study considers stories from the European, Australian and North American context. This approach may, at first sight, pose the difficulty that individual texts are not sufficiently considered within the specific cultural context from which they originate. However, it takes into account that both the incidence and prevalence of Alzheimer’s disease and other dementias are particularly high in First World countries and that these nations all face similar socio-economic, healthcare and ethical challenges in the confrontation with the condition.³⁸ As such, I was not surprised to realise that there are clear, overarching narrative themes and recent developments that are consistently reflected in the presentation of both patient and condition across different languages and Western cultures.

In this respect, I am less concerned that this research could be biased as pertaining to what Sally Chivers deliberates upon, and Chris Bell calls ‘White Disability Studies’.³⁹ Like its medico-scientific as well as humanities-related researchers, dementia, in general, and Alzheimer’s disease, in particular, continue to belong, first and foremost, to the developed world – in terms of both their incidence and perceived burden.⁴⁰ These facts explain, in conjunction with Couser’s deliberations on the non-representativeness of illness narratives, the phenomenon that dementia memoirs largely originate from the white middle-class background and, thus, necessarily dominate the array of narratives critiqued in the present study.⁴¹

Their small number as well as their insufficient analysis in a broader context has encouraged me to bring all patient accounts I became aware of during my studies into the present considerations: to the best of my knowledge, I have considered all popular press first-person accounts, including the print-on-demand texts available until 2013/2014 (though the number of print-on-demand texts steadily rises). By comparison, I had to choose which caregiver narratives to include in this consideration. Reading widely on the caregivers’ plights and burdens, I realised that there are recurring themes in their telling, and these eventually suggested the structure of this book. Within these themes, I then selected texts that appeared particularly poignant or rich in their emphasis and presentation. Aiming to offer accounts of a diverse range of narrative forms and artistic expressions, I include memoirs, diaries, films, graphic novels, photo and picture books in my reading, and discuss them in relation to the limited existing scholarship on dementia narratives. I study textual narratives and visual material side by side, following Alan Radley’s conviction that a focus on ‘questions to do with serious illness, its understanding and the social response it provokes’ allows for such comparative reading.⁴²

Of course, the argument could now run that including patient blogs or interviews would significantly enlarge the sample. But I explicitly focus on accounts available on the book market, because, as for example Vai Ramanathan’s dementia discourse analysis illustrates, depending on the audience we expect, we frame our story differently.⁴³ A blog may be freely accessible, but its primary audience is the intimate network of individuals confronted with similar experiences, so that much knowledge remains unsaid because it is already shared.⁴⁴ In writing for the general book market, author-narrators address a reader and publisher with a different set of expectations. This is partly related to the fact that – set against the transience of knowledge in the fast moving tweeting and chatting online world – a book allows for the repeated return to its message, conveying stability, persistence and authority. In addition, as Arthur W. Frank puts it, published stories ‘affect how others tell their stories, creating the social rhetoric of illness’.⁴⁵ At the same time, book publication demands an articulation sufficiently polished for communication aimed at political outreach. Tracing editorial efforts in a literary analysis brings home what it means to have to perform in what Stephen Post called a ‘hypercognitive culture’; and additional meaning is uncovered where patients write against the cognitive norms that such a culture imposes. It is telling enough that several patient narratives have been self-published, that is, as print-on-demand, because they were not deemed polished enough by routine publishers.

The encounter in the hospital made me utterly aware of how abstract the condition is for all those who are not exposed to the daily encounter with the patient. Likewise, many policymakers are also removed from either experience – be it familial or professional caregiving. Convinced that illness narratives are the best teachers, where patient contact in the framework of hospital rounds or interviews is not easily achievable, I have included several of the narratives discussed here in my pharmaceutical care teaching.⁴⁶ Encouraged by the engaging response of students, I have become even more aware of the persuasiveness of these texts. Therefore, I hope that the present consideration of visual and textual narratives will offer their author-narrators an additional platform that reaches a readership beyond that which the original texts per se would and could achieve. Most of all, this book is meant to sharpen the politicians’, health-economists’ and care providers’ eyes to the concerns of patients and caregivers. It seeks to contribute to the ongoing discussion regarding urgently needed changes in Western healthcare systems that take into account the rapidly increasing numbers of individuals likely to develop symptoms of dementia.

For the purpose of these explorations, I specifically distinguish the notion of Alzheimer’s disease, and dementia more broadly, from other brain damage insofar as the triad of incremental, chronic and untreatable cognitive decline is the core threat in the Alzheimer’s experience. In particular, I see a clear distinction between brain damage caused by events like a brain tumour, which usually involves very fast degeneration, a stroke, where the degenerative process is not experienced at all, or drug abuse, which implies self-inflicted brain cell death. By comparison, I am including – arguing from a neuroscientific perspective and understanding – narratives relating experiences with conditions very similar to dementia of the Alzheimer’s type: Lewy body dementia that can co-present with Parkinson’s disease, vascular dementia that may originate from transient ischemic attacks (TIA), and frontotemporal dementia. Put differently, I am looking at the type of degenerative chronicity that the cultural narrative links to the aging process, with Alzheimer’s disease – unlike, for example, heart disease or arthritis – being much less medically accessible and physiologically tangible, but all the more threatening because it attacks the organ that is considered to harbour an individual’s identity.

As a researcher on molecular mechanisms underlying acute and chronic neurodegeneration, I have been directly exposed to, and actively participated in the medico-scientific discourse regarding Alzheimer’s disease for approximately fifteen years. As such, I am particularly aware that the current cultural dementia narrative is significantly structured by scientific and biomedical notions of the condition. These strongly relate to concepts of deterioration, decline, loss and death. But while I am conscious that I may be prone to reading dementia narratives through the medico-scientific lens, it will, at times, be necessary to appropriate the language of this neuroscientific narrative: I use medico-scientific terminology where narratives employ it, and also use this lexicon where I refer to medical and clinical aspects of the condition.

Mindful of Charles Riley’s ‘Guidelines for portraying people with disabilities in the media’, my use of the term sufferer does not want to suggest that I perceive of each and every patient as suffering in and from their condition.⁴⁷ The life-affirming presentation of several patients clearly contests such biased reading. Still, a parsimonious use of this and similar expressions helps me to avoid persistent repetitions like ‘individual with dementia’. Likewise, I define the caregiver as the spouse or adult child, who is closely exposed to the relative’s condition, but not necessarily the only or prime individual looking after the patient, even though both roles may coincide in the same person and author-narrator.

Sifting Dementia Narratives

The first part of this analysis, Chaps. 2 and 3, focuses on caregiver accounts. It asks how family members experience the condition – in relation to themselves as much as their parent or partner. I agree with Ann Burack-Weiss that memoirs do not lend themselves to an objective scrutiny of ‘[a]ge, gender, race, ethnicity, education, income, social class, religion, language, sexual orientation, and geographical location’, since their author-narrators are self-selected.⁴⁸ Yet, core differences are present in terms of age and gender, not least, because caregiving, generally, continues to be considered the duty of the female, and the growing number of elderly patients imposes caregiving activities on adult children. Chapter 2 explores the direct impact on caregivers of being exposed to caregiving as such and, hence, the patient’s decline on a daily basis. In this way, I hope to illustrate how the perceived degree of caregiver burden impacts on caregivers’ understanding of themselves (as child or partner) as well as the presentation of the patient (as parent or partner). This analysis, by itself, will suggest the need for stronger socio-economic caregiver support.

At the same time, this chapter aims to separate out conceptual differences between parental and spousal caregiving and its impact on identity perception. This differentiation is necessary, because a ‘history of reciprocity, along with a sexual history, separates the situation of partners from other family care relationships’.⁴⁹ I examine how shared memories of a life-long relationship colour patient presentation by the maintaining of pre-narrative identity. Parental caregivers, in turn, may well enter the caregiving experience in the aspiration to fulfil their generational duties, while – confronted with the loss of the parent – seeing their own identity as child at stake. I also argue that the increasing societal awareness of the condition and a related awareness of caregiver needs, also enabled by caregiver life-writing itself, led to a shift from a caregiver-centred to a more patient-centred approach in caregiving. This shift is strongly reflected in more recent caregiver accounts. If it is true that the reader’s perception of the caregiver’s moral stance is tied to the nature of patient presentation, this shift brings home the female caregiver’s exposure to manifold ideological prejudices: expected hands-on daily care, personal experience of loss, struggle with personal identity issues and exposure to criticism for their so influenced narrative choices.

Chapter 3 further emphasises how the physical as well as emotional burden related to caregiving shapes patient perception. The usually less actively involved male family member has, thus, what I want to call a ‘care-free’ perspective on the patient and her/his condition. This chapter opposes the female perspective on caregiving to the male story. But it is less interested in identifying what it means to be the son or husband of a dementia patient as such. Rather, it seeks to detach the influence on the presentation of both illness and patient of the immediate caregiving experience and burden, specifically to illustrate the enormous psychological and emotional cost of treating a parent who is no longer a parent and how this particularly reflects on the presentation of the parent-turned-patient. In this way, it illuminates the impact on the perception of patient identity and the condition itself of cultural and socio-educational upbringing. More specifically, I argue that patient presentation is strongly gendered and closely related to societal attitudes to aging, and that enabling views of dementia emerge where aging is not considered merely in terms of loss. These insights reveal further working points for health-economists and policymakers.

In the second part of this analysis, Chaps. 4 and 5, I closely scrutinise patient narratives. Even though dementia first-person accounts are just beginning to take off in print-on-demand spaces, and the patient’s voice has only been heard in a period scarcely exceeding twenty-five years, I sense phases of development reminiscent of the evolution G. Thomas Couser identified in the case of breast cancer narratives. Looking back on thirty years of life-writing, he identified that the ‘genre’ of breast cancer narratives developing in the 1970s had become removed from its initial impulses by the 1990s.⁵⁰ Similarly, and in agreement with Basting who identifies three phases in patient life-writing, I argue that the politicisation of dementia narrative directly correlates with an increased societal awareness of the illness.⁵¹ I will consider gender questions in relation to the author-narrator’s advocacy for independence and autonomy, rather than scrutinising these narratives predominantly through the gender prism. In doing so, I will take stock of the small sociohistorical scholarship on Alzheimer’s narratives that offers a reflective comparison between caregiver and patient life-writing set against social constructionist theories.⁵²

Chapter 4 dissects how societal expectations regarding the patient’s performance and productivity impose successful narrative articulation as central and integral to the perception of identity, social assertion and self. It explores how the first patient accounts develop coherent, linear narratives, and illustrates how the discrepancy between illness process and narrative plot impacts on the reader’s perception of the condition. A comparative study of patient versus co-authored texts that additionally accounts for different stages in the severity of dementia will be as revealing as an analysis of sequential publications by the same patient. This investigation will support my argument that gradually intensifying patient activism enables patients’ freedom of presentation, and, thus, begins to shift societal views on aging in general, and the condition in particular.

More recent Alzheimer’s disease patient narratives take this activism further – in both form and contents: disease-imposed constraints become the narrative’s core in terms of both aesthetic presentation and political pursuit. This development, mapped out in Chap. 5, thus, parallels the changes observed in caregiver life-writing, as patients and their needs reach the centre of narrative presentation and performance. I argue that patients can thrive, building on earlier advocacy of their fellow sufferers, on illness presentation that matches their attention span, live within their remaining abilities, and, thus, authoritatively claim their continued independence. This is especially the case for female patients who appear doubly strong when they overcome preconceptions of passivity and dependence – characteristics associated with cognitive impairment as much as being female.

My analysis, consequently, concludes with a consideration of the changes both caregiver and patient life-writing have gone through and how they mutually influenced each other. These changes have been conditioned by the rising number of individuals with dementia and the increasing societal presence of the disease. At the same time, these developments propelled forward a patient-centred movement, as more and more individuals touched by the condition aim actively to participate in shaping the mainstream dementia discourse. A deliberation on very recent third-person caregiver narratives will highlight how this evolution in patient perception has reached broader societal levels and promises to influence healthcare planning and socio-economic and cultural approaches to the condition.

In sympathetically analysing the testimony of those intimately affected by dementia, this book centrally contends that patient and illness perception and presentation develop within and impact on the evolution of dementia care and the appreciation of the patient’s continued self away from the medico-scientific and health-economics dementia discourses. I believe the insights so gained to be accurate and dependable: dementia patient narratives are new enough to be free of ‘second-hand’ myths, as Hawkins calls them, and they are, as Couser would have it, more utilitarian than autobiographical in nature.