Reconsidering Dementia Narratives

Empathy, Identity and Care

Rebecca Bitenc

• Publisher: Routledge
• Year: 2019
• ISBN:
  9780429619502
• Edition: 1
• Topic: Social Sciences
• Subtopic: Global Development Studies
• Index: Social Sciences

Reconsidering Dementia Narratives explores the role of narrative in developing new ways of understanding, interacting with, and caring for people with dementia. It asks how the stories we tell about dementia – in fiction, life writing and film – both reflect and shape the way we think about this important condition.

Highlighting the need to attend to embodied and relational aspects of identity in dementia, the study further outlines ways in which narratives may contribute to dementia care, while disputing the idea that the modes of empathy fostered by narrative necessarily bring about more humane care practices. This cross-medial analysis represents an interdisciplinary approach to dementia narratives which range across auto/biography, graphic narrative, novel, film, documentary and collaborative storytelling practices. The book aims to clarify the limits and affordances of narrative, and narrative studies, in relation to an ethically driven medical humanities agenda through the use of case studies.

Answering the key question of whether dementia narratives align with or run counter to the dominant discourse of dementia as 'loss of self', this innovative book will be of interest to anyone interested in dementia studies, ageing studies, narrative studies in health care, and critical medical humanities.

Part I

Storytelling, experience, and empathy

1 Narrating experiences of dementia

Embodied selves, embodied communication

In illness our bodies change. Biomedicine attempts to reverse, halt, or alleviate the effects of bodily dysfunction. In pursuing this aim, biomedicine treats the body like an object to be fixed, rather than the locus of subjective experience. Accordingly, it has been criticised for paying too little attention to the person with disease and to the way the identity and life world of the person are changed through the experience of illness (Carel 2008, Frank 1995, Kleinman 1988). Using contemporary phenomenology, Havi Carel (2008) describes how bodily changes in illness radically transform our experience of ourselves as well as our relationships to the physical and sociocultural world. Paying attention to the multiple ways illness transforms subjective experience will not only provide a fuller understanding of a given illness, she argues, but will allow us to develop interventions that go beyond treating the physical body alone (Carel 2008: 73). I argue that life writing facilitates a phenomenological¹ approach to illness. These texts provide rich accounts of particular people in a specific context and can therefore contribute to a better understanding of how subjective experience changes in illness. In a second step such knowledge may be used to adapt and develop therapeutic and social interventions.

In this chapter, I explore the experience of living with dementia through autobiographical accounts both by people with dementia and through a documentary by a family care partner. I focus on embodied aspects of the disease as they are communicated by a range of narrative media, arguing that these embodied aspects shed a more nuanced light on what is lost, what changes, and what remains. To ground my discussion, I review how contemporary phenomenology, and particularly the notion of ‘embodied selfhood’ (Kontos 2005) and ‘embodied’ (or nonverbal) communication (Killick and Allan 2001) have been productively employed in dementia studies. I then turn to a close reading of contemporary first-person accounts—or autopathographies—by people with dementia, and conclude the chapter by exploring the potential for intersubjective understanding in David Sieveking’s documentary Vergiss Mein Nicht (Forget-Me-Not) (2012).²

There are two different aspects to the relationship between embodiment and selfhood that I address. On the one hand, autobiographical narratives across different media highlight the extent to which embodied (self-) experience changes in this disease. That is, they show or describe how consciousness, emotions, cognition as well as body control are all affected by dementia. Yet these changes to self-experience also extend beyond the boundaries of the body. So, for instance, due to both the symptoms themselves and the stigma attached to the disease, relationships also undergo significant changes. The pernicious effect of illness on social interaction, in turn, has serious repercussions on the ill person’s sense of self.

On the other hand, attending to the embodied nature of selfhood can redress the simplified notion that the self is ‘lost’ in dementia. Equating selfhood with high-level cognitive functioning or narrative identity can obscure (a) the extent to which memories are embodied (consider, for instance, examples of procedural memory such as the capacity to ride a bike, dance, or knit) and may thus persist even when verbal communication disintegrates, and (b) the extent to which selfhood can be understood as an embodied perspective that remains in dementia. This ‘first-personal givenness of experience’ (Zahavi 2007) may, furthermore, be communicated by drawing on nonverbal ‘embodied’ forms of communication. A key question is therefore how aspects of ‘embodied selfhood’ (see Kontos 2003, 2004, 2005) and embodied communication feature in various storytelling environments, including documentary film. Recognising embodied selfhood in dementia has important implications for dementia care, as it might lead to a more sensitive understanding of what is actually lost in the disease while allowing us to recognise and value the person who remains.

Embodied selves, embodied communication

In dementia studies, embodiment has been used to argue both for and against the notion that selfhood is lost (see Davis 2004 and Kontos 2003, 2004, 2005 respectively).³ Embodiment has also been cited as a means to circumvent the equivocal question of selfhood in dementia altogether (Millett 2011). In this section, I do not intend to arbitrate between these opposing views and provide a definitive answer to what selfhood (or embodied selfhood) is or how it is constituted, nor to discriminate among terms such as self, identity, or personhood (see Millett 2011: 511).⁴ Instead, I investigate how the notion of embodiment—and relatedly, embodied selfhood and embodied communication—can be productively used to engage with the subjective experience of dementia and, potentially, ground the moral standing of people with dementia not on a cognitive model of personhood but on our embodied nature as human beings.

The neurodegenerative nature of dementia impacts on memory, language, thinking, and reasoning, all of which are traditionally seen to define our personhood. However, less cognitively orientated parameters of personhood, such as emotion⁵ and relationality,⁶ are also impacted by the condition. Applying the notion of embodiment in dementia allows us to ask a number of questions: What do the changes on a neurological level entail for people with dementia and their experience of their own cognition, as well as their experience of self-efficacy in physical and social environments? How do these changes speak to and elucidate the common understanding that the person with dementia is in some sense ‘losing herself’? And can embodiment perhaps provide a means of sustaining selfhood in dementia?

Pia C. Kontos develops the notion of ‘embodied selfhood’ (2003, 2004, 2005) to capture the idea that ‘fundamental aspects of selfhood are manifested in the way the body moves and behaves’ (2005: 556). Kontos’s ethnographic study in a Jewish care home provides numerous rich examples to counter the dominant cultural conception that people with dementia experience a ‘steady erosion of selfhood’ (2005: 553). Kontos makes a substantial contribution to dementia studies by bringing to light the continued purpose and meaning with which people with dementia engage with the world (2004: 836). The strength of her analysis lies in attending to aspects of behaviour that are pre-reflective, or at least not overly reliant on higher-order cognition, as well as highlighting a multitude of nonverbal elements of communication, such as eye movement, eye contact, gesture, facial expressions, and posture. Yet Kontos perhaps does not sufficiently acknowledge that the brain is part of the body. She argues against cognitivist definitions of selfhood, but in the meantime does not pay due attention to how aspects of bodily behaviour are orchestrated by the brain and therefore also have a neurological substrate (even if some aspects rely on older brain structures and less on the neo-cortex). As such, the aspects of embodied selfhood, she describes, are equally at risk of being affected by dementia, and therefore of being eroded eventually—again making people with more advanced dementia open to the risk of being construed as non-selves.

Stephan Millett’s (2011) proposal to ground an understanding of dementia in bio-phenomenology offers an illuminating alternative to Kontos’s account. Millett proposes to leave aside the question of selfhood or personhood in dementia and instead focus on the experience of living with the disease, the continuity over time of an embodied individual, and our attitude towards that individual (Millett 2011: 515). The ‘bracketing’ of the question of personhood, Millett suggests, allows us to ‘focus on the idea that there is a being with an inner life confronting us, a being with value simply because he or she has a “life-world”—a constructed meaningful world revealed to him or her through their senses’ (515). Drawing on Jakob von Uexküll’s biologically grounded phenomenology, Millett emphasises the role of the lived body through which each of us creates a meaningful world (510). This view allows us to recognise that

there is a life-world – or directly experienced world – for people with dementia, who continue to experience the world and create meaning, even in the presence of severe cognitive degradation. It is clear that people with dementia have an affective response to certain stimuli: they laugh, cry, express frustration and disappointment, engage playfully with others, and so on. Affective or emotional responses – signs of happiness, sadness, frustration, anger and the like – are indicators of an interior life the extent of which may not be determinable using cognitive criteria alone. From the affective responses we can infer that people with even late-stage dementia still react to, engage with, and co-create a life-world.

(510)

Drawing on bio-phenomenology, Millett argues that people with dementia continue to create a meaningful world and continue to be of value to others (517). His analysis widens the scope of subjectivity and meaningful interaction with the world beyond the examples of bodily intentionality provided by Kontos, to include ‘bodily reactions of all sorts, to inputs from a range of external sources such as reactions to heat and cold, to smells, sounds and sights’ (517). Millett’s approach thereby suggests that there is a continuing inner world even in the most advanced stages of dementia. His approach is a rare example of research that disallows positing some kind of ‘cut-off’ point in the progression of dementia, at which stage the person no longer has an inner world and may therefore be considered valueless. Many reparative moves within dementia studies often, inadvertently, serve to enforce stigmatising and dehumanising accounts of the later stages of the disease, while ‘recuperating’ people with less severe symptoms into the sphere of the fully human. By contrast, as Millett states, ‘by employing the concept of bio-semiosis we can acknowledge, with Sabat … that people with dementia are semiotic subjects—that is, they are “driven by meaning”—but without committing to cognition-reliant definitions of selfhood and intentionality’ (2011: 520).

However, despite Millett’s assertions, it is difficult to see how the very basic sense of meaning-making (what he terms semiotic niche value)—such as reacting to hot or cold—differs from his example of a tick that reacts to warmth and butyric acid (516). Clearly, the moral standing of people with dementia is more closely related to what he terms ecological niche value—‘which is a statement of their value to other organisms,’ that is, ‘their social interactions with other humans’—as well as to ontological niche value—‘that is, the [pre-existing] capacity or potential of an organism to interact with its environment’ (517). ‘People with dementia—even severe dementia,’ Millett writes, ‘continue to have the capacity to interact with their environment and, simply because they have a body and the capacity to interact, they clearly occupy an ontological niche’ (517). By highlighting ecological and ontological niche value—terms he borrows from Jakob von Uexküll’s ecological studies—Millett moves closer to a social constructivist position that focuses on the importance of social interaction and relationships in maintaining the dignity of people with dementia. Furthermore, Millett turns to philosophers such as Aristotle, Jonas, and Lévinas in order to argue that ‘each living thing has a unique non-instrumental value-for-itself’ and ‘each human being announces an ought-to-care to the world that places each of us under an obligation to help that being’ (519)—an argument I fully agree with, but that does not follow from bio-semiosis alone.

Importantly, Millett’s account acknowledges the effects that dementia has, especially on cognition, while productively circumventing the problem of making value-judgments based on aspects of cognition or on the notion of personhood. At the same time, he engages with Davis’s suggestion that ‘Kitwood’s view that it is possible to maintain personhood at the extremes of this condition’ may be ‘damaging to those relatives forced to take on the role of primary carer’ (Davis 2004: 369). Millett emphasises that ‘if we take the view that people with dementia maintain a self we may place an unnecessarily high burden on the untrained family carers who do most of the work of care.’ Such a view, he argues, denies carers ‘a proper mourning for the loss of their loved one as the dementia progresses,’ and induces feelings of ‘guilt or shame at their changed feelings toward the obviously changing “person”’ (Millett 2011: 509–10). Millett’s account indicates how attitudes about people with dementia can shift towards a more sympathetic understanding without having to rely on notions of selfhood. Nonetheless, in the following discussion I retain the notion of embodied selfhood as a shorthand expression both for embodied aspects of identity and for the way each human being experiences the world—what phenomenologists refer to as the first-personal perspectival givenness of experiential life (Gallagher and Zahavi 2008, Zahavi 2007), which I claim persists in dementia.

Attending to the body in dementia also opens up the possibility of finding avenues for communication that do not rely heavily on coherent verbalisation. Speaking of ‘embodied communication’ as opposite to ‘verbal’ communication is of course misleading, since verbal communication is embodied. However, I use this term to draw attention to other ways that bodies and behaviour may speak. As Lisa Snyder (1999) highlights in her collection of interviews with people with dementia, because of the way the disease affects cognition, many individuals may not be able to maintain the same insight and verbal abilities as previously. ‘But throughout the course of Alzheimer,’ she writes, ‘each person continues to convey messages through action, gesture, expression and behavior. The disease does not result in a complete inability to communicate. But it can require our time, energy, receptivity, and ingenuity to observe, listen, and comprehend effectively’ (1999: 32–3). I agree with Snyder that the ability to communicate persists, although some forms of life writing may not be able to adequately capture this capacity for communication. Documentary film (and perhaps also graphic memoir, as I discuss in later chapters) offers a mediated opportunity to engage with these ‘embodied’ forms of communication and to train one’s receptivity to channels of communication outside language (see also Killick and Allan 2001).

Inside views: life writing by people with early-onset dementia

This is my attempt to leave a record of what is going on between my ears.

(Taylor 2007: 3)

If severe illness generally threatens the production of a life narrative (Couser 1997: 5), then dementia, in particular, seems to threaten all aspects central to the autobiographical project: the auto/self in that it is seemingly eroded, the bios/life in that memory loss threatens the ability to remember and coherently narrate life events, and finally the graphein/writing is threatened by the erosion of higher-order cognitive functions. And yet, as the epigraph above taken from Richard Taylor’s Alzheimer’s from the Inside Out (2007) demonstrates, a steadily growing number of first-person accounts are being published, mainly by people with early-onset Alzheimer’s disease.⁷ Despite the challenges dementia poses, they present very successful ‘attempts’ to ‘record’ what it means to be living with a progressive neurodegenerative brain disease. These accounts have taken the form of articles in Alzheimer’s care journals—such as Marilyn Truscott’s articles of testimony and advice (Truscott 2003, 2004a, 2004b)—blogs,⁸ and also book-length memoirs or autopathographies.⁹ Many of the authors also appeared on radio programmes and TV shows, spoke at conferences, acted as board members for the Alzheimer’s Association, or participated in documentaries about their experience (Pratchett and Russell 2009) as part of their fight to alleviate the stigma attached to dementia. As such, these autobiographical acts have played a crucial role in patient advocacy in the Alzheimer’s movement.

In what follows, I draw on a range of autobiographical texts by people with early-onset dementia to explore what these accounts suggest about the changing nature of self-experience. Engaging with these narratives elucidates the range of changes across cognitive, bodily, and social spheres, suggesting in turn common themes that can be found across individual experiences of living with this condition. However, this is not to suggest that there is only one type of ‘dementia experience.’ On the contrary, these autobiographical accounts highlight the extent to which the experience of the condition and the progression of symptoms vary significantly from one individual to the next. Furthermore, while their authors differ in gender and nationality, these texts cannot be seen as representative for the entire populatio...

Table of contents

• Cover
• Half Title
• Series Page
• Title Page
• Copyright Page
• Dedication Page
• Table of Contents
• List of figures
• Preface
• Acknowledgements
• Introduction: reconsidering dementia narratives
• Part I Storytelling, experience, and empathy
• Part II Life writing, self-writing, and creating identities
• Part III Narrating dementia/rethinking care
• Dementia narratives and beyond
• Bibliography
• Index