Backdrop

While there is no history of dementia in my family there is a familial connection in my mother, who used to be a geriatric nurse. When in my late teens (around four decades ago…), she started taking me with her on night shifts and introduced me to the people in her care. I became fascinated by one woman in particular – always in the same wingback chair, still and silent, there and oddly also not, like a photograph. The only way I could even vaguely understand was to imagine her deeply asleep, if perhaps dreamlessly, with her eyes open, but I wasn’t satisfied by this way of thinking. What also made her remarkable was that she was only in her forties (younger than I am now) while all the other residents were on average twice her age. Many years later I realised that she most likely had young-onset Alzheimer’s, but I still didn’t know what that might mean.

This experience, and the desire to better understand that it stirred in me, must have made a strong impression as I remembered it vividly in the summer of 2015. That July, while travelling through Bosnia, I found time to read Rebecca Solnit's A Field Guide to Getting Lost (2006), and was particularly struck by her definition of ‘lost’ as having “...two disparate meanings. Losing things is about the familiar falling away, getting lost is about the unfamiliar appearing."¹ This is the location, the where and when and how, of my doctoral research journey's origins, as it was there that I began to wonder: what happens if the familiar and unfamiliar combine? If such a combination is possible, who might it be possible for? Could this be what the experience of dementia is like – or, could lostness as a concept help me to understand that experience in some meaningful way? And what might that understanding look or otherwise be like?

As I prepared this creative practice research I learnt that the disorienting misperceptions most commonly encountered in cognitive decline are visual in nature. Given, then, that dementia reveals the importance of vision to perception, how may the photographic, with lostness as optic, be used to illuminate cognitive decline? In what ways can creatively visualising aspects of neurodegeneration in dementia inform understandings of its existential ambiguities? These questions have guided my enquiry – through a series of processes, of thinking through the medium of photography principally but also moving image, installation, creative writing and artists’ books, leading me to things very different than I was capable of imagining at the outset. In this sense they have been like an 'X' mentally sketched on an imagined scrap of paper, that I kept in mind while trying to envisage what might have been apparent beyond its edges had it been a fragment of map – what became apparent as I mapped what I discovered, understood and created.

A map can be anything. Etymologically, the word ‘map’ is a shortening of the Mediaeval Latin mappa mundi, ‘map of the world’, where mappa means a “napkin, tablecloth or flag”, on which maps were then drawn.² Our common conception of maps is as clear representations that one can orient oneself by; inversely, maps can also be considered as indications of where or how one is or has been lost. The following exposition is my map: its territory is the creative practice research; the map is not the territory.³

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In the course of my research I considered several practical approaches and conducted material experiments, not all of which were pursued (at least, not as part of this doctoral project). What has emerged from this central creative practice enquiry are a series of three large sub-projects that differ but can be considered overall as interrelated and, therefore, as a coherent body of work. These sub-projects are numbered and titled: Picturing Clouds of Unknowing One, Two and Three respectively, abbreviated to PCU1, PCU2 and PCU3 hereon in. The obvious visual element strongly connecting them all is the photographic medium. This has been used in a variety of ways, from sculptural objects and moving image in installations, to 2D and 3D (stereoscopic) forms of photography combined with creative writing in the medium of artists’ books. In addition, other aspects of the works consistently echo across the three sub-projects; for instance, in some of the materials used (perspex, acetate, fishing line), and in plays of reveal/conceal stemming from consideration of the ‘falling away’ and ‘appearing’ of the familiar and unfamiliar drawn from Solnit’s definitions of ‘lost’.

In PCU1, thinking about lostness in relation to forgetting or ‘unknowing’ objects and their names led to the unexpected realisation that lethologica – a phenomenon otherwise commonly known as tip-of-the-tongue – is an experience in which the familiar and unfamiliar do combine, in that we feel we know something even as we’re aware it remains unknown to us. As lethologica becomes generally more prevalent with age, but even more so in Alzheimer’s, especially when attempting to recall words of “low frequency and imageability,”⁵⁵ this discovery was particularly pertinent. In PCU2, lostness met loss as I tried to visually assimilate scientific explanations of how memory retrieval is progressively impaired in the brain, and how this might relate to the ‘clouding’ of thought described by people living with dementia. And for the final project, PCU3, I pulled together much of my prior research into a series of artists’ books. These are linked by metaphors used by people living with dementia, e.g. ‘clouded thoughts’, and by different ‘unknowings’ variously experienced by them, such as agnosia, prosopagnosia, aphasia, and so on. They contrast aspects of domestic life with diverse scientific discourses (e.g. neurology, meteorology) to touch on experiences of different kinds of disorientation (lostnesses or ‘unknowings’ that are perceptual, spatial, temporal). They also hint at some of the many questions raised by dementia and the different ways it, the body and cognition have been considered historically, that emerged in the course of the doctoral project as a whole.

Fresh approaches to using photography in work about cognitive decline were developed and, when examined from the perspective of dementia, avenues for review of the medium as analogical were also opened. Contextual study engaged with works and artists not considered together before and indicates scope for further enquiry in several areas related to these. And this research confirms the benefits of attending to the implications of cognitive decline, as people living with dementia can provide “remarkable insights into the capacity to navigate fragmented identities,”⁵⁶ and more besides.

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If it were easy to imagine what it might be like to progressively become, as in Simone Weil’s 1930 thought experiment, “an emptied hypothetical subject, a human tabula rasa, who knows nothing about herself or the world”⁴⁴ – a person freed of presupposition, existing increasingly in sensation – this project would not be necessary. As a brief survey of philosophical approaches to dementia has indicated, any notion of what it’s like to experience “a pure immediacy of being”⁴⁵ is one our imaginations can only move towards hypothetically and fractionally. Attempts to consciously apprehend and define such experiences in all areas of study – clinical, conceptual etc – can only partially succeed, precisely because this kind of understanding requires cognition. The implications of dementia as a way of being can neither be fully grasped from the outside of it as lived experience nor from within, as dementia increasingly affects people’s abilities to orient themselves in relation to who they were before the condition’s advent (even as they may sense changes in themselves), to navigate an increasingly bewildering and inexpressible present, and thus to comprehensively transmit back to us what such experience is like.

Description of dementia as ‘progressive’ gives the impression that conditions advance in slow and steady fashion, when in fact people living with it report that they have ‘ups and downs’ – periods of irregular and largely unpredictable cognitive impairment events unevenly punctuate lengths of time during which life is comparatively normal. Even in the final stage of a dementia there can be sudden, if short-lived – and neurologically inexplicable – lucidity.⁴⁶ The uneven, erratic pace of development and severity, differing from one person to the next, made it difficult to pinpoint with absolute accuracy a specific phase to address in this research. Instead, I chose to focus on people in the stages of their conditions during which they are still able to ‘report back’, orally or in writing, to however limited degree. What people are able to tell us is immensely interesting and of great worth. As examples, some quotes by anonymised persons with dementia: “I get a funny feeling I forget things,”⁴⁷ and “Cannot pull myself back to what I have been.”⁴⁸ This sense of simultaneous familiarity and unfamiliarity, of knowing or sensing that things are unknown or becoming unknown to them in stages, strongly supports the conceptual underpinnings of this research. Although the pandemic prevented me from working with people in person, accounts of lived dementia experiences drawn from secondhand sources (readily available in print and online, ranging from documentaries and autobiographies to blogs, vlogs and poetry) have provided significant insights and greatly helped to shape the development of this research.

Overview

This creative practice research sits in the growing field of contemporary visual and literary approaches to medical concerns. It’s centred most specifically in the photographic medium, but includes moving image, installation, artists’ books and creative writing. The work is also situated in the context of the increasing prevalence of dementia worldwide, and holds the potential to inform developments in the critical medical humanities.

Dementia is a collective name for progressive degenerative brain syndromes. Conditions grouped under this term variously affect orientation and communication, and the difficulties people experience with their senses and memories can cause them to misinterpret the world around them. Vision is the sense most commonly affected,⁴  due to sight impairment in the eyes, an inability of the brain to process visual stimuli, or both. This can lead to misperceptions (mistaking one object or person for another, for example), hallucinations (which can also include other senses such as hearing, taste and smell), and difficulties with temporal and spatial awareness (perception of being in the past, inability to gauge distances and dimensions).⁵  The incidence of each of these perceptual symptoms differs from one type of dementia to the next as well as from one person to the next but, broadly speaking, they are experienced to degrees across dementia types, particularly as conditions decline.

When I began my doctoral project in September 2017, the orthodox view of Alzheimer’s was that “sticky agglomerations, or plaques, of the peptide beta-amyloid destroy synapses and trigger the formation of neuron-killing ‘tau tangles’”,⁶ and the correlate pathway to finding a solution to this has been a continuation of the “30-year pursuit of amyloid destroyers”⁷ that has proven difficult to contest. For instance, in Brain Fables (2020), Alberto Espay points to a study showing that “only half of [its subjects] who met autopsy criteria for Alzheimer’s disease had dementia prior to death[, which] also means that half of those who had Alzheimer’s by autopsy standard had no dementia when alive,”⁸ and argues convincingly that paradoxes like these ought to raise questions about approaches to this condition still heavily weighted towards “the causal role of aggregates of… beta-amyloid and tau”⁹ in the brain. Similarly, towards the end of 2018 scientists in this field began to openly acknowledge that certain types of Alzheimer’s might have connections to strands of the herpes virus, such as HSV-1, HHV-6A and HHV-6B, and as a result began to consider that neuroinflammation treatments might be more effective than amyloid destroyers¹⁰ (not to mention the implication that some forms of Alzheimer’s may be transmissible).¹¹ Further shifts in understanding occurred as my PhD progressed, yet there is still no effective medication available. At the time of writing, the most recent announcement of a drug claimed to slow mental decline in Alzheimer’s was lecanemab,¹² which targets amyloid in order to decrease this, and while in trials it’s considered to have had this result, its beneficial effects seem so minimal that the measurable difference between it and placebo was reported to be “almost unnoticeable.”¹³ Alzheimer’s is acknowledged as the most common type of dementia (affecting an estimated 60-70% of diagnosed people globally),¹⁴ which is why it has been the focus of efforts to find treatments. But according to Alzheimer’s Disease International more than a hundred types of dementia have been identified,¹⁵ and as “the boundaries between different forms of dementia are indistinct and mixed forms often co-exist,”¹⁶ and there is no clear consensus as to what dementia overall or its varying subtypes actually are,¹⁷ navigating this nebulous field has been challenging.

In parallel to the sciences, philosophical perspectives likewise evolve. While Tom Kitwood’s rejection of the “linear causal relationship between neuropathology and dementia”¹⁸ has greatly influenced the development of person-centred care, reviews of this approach undertaken since find there is still “an absence of clarity with respect to the conceptualisation and actualisation of personhood,”¹⁹ which may not be helped by the fact that the term ‘personhood’ has now fallen out of favour. Other networked approaches, such as 4E (where the ‘E’s’ are “embodied, embedded, enactive, and extended”), suggest that cognition is “shaped and structured by dynamic interactions between the brain, body, and both the physical and social environments.”²⁰ In specific relation to dementia, proponents of 4E claim that cognition can be seen as having “extraneural and extracorporeal factors”²¹ in that the ability to remember can exist beyond the self in the form of notebooks, the information within holding “the role usually played by a biological memory.”²² While this is not without interest (with regard to the tangible outputs of creative practice research, for instance), it doesn’t really help towards understanding dementia as lived experience. Catherine Malabou’s approach differs in that it derives the interesting concept of destructive plasticity from neurology, but the application of this to an understanding of self and identity as nonetheless narrative leads to a dead end in “the deserts of Alzheimer’s patients,”²³ and has been critiqued as an “ontology that is defined only in terms of suffering, deficit, horror, loss, vulnerability… that effaces the contours of the person… [and] construe[s] the lived experience of dementia as opaque and unrepresentable.”²⁴ Daniel Davis leads us to a similar impasse in that, as Martin Heidegger’s “explication of existence is… necessarily situated and self-aware,”²⁵ and Maurice Merleau-Ponty hints that “in illness the body schema is disturbed… [such that] a disintegrating cognition erodes our Being-in-the-world,”²⁶ the suggestion is that, beyond a certain point, dementia “effects the dismantling of the self until there is nothing left”²⁷ for phenomenology to address. Thinking theories relevant to dementia can seem meagre then, and the one area in which science and philosophy might be said to be in alignment is that neither really knows.

As for contemporary culture, according to the 2021 Dementia Fiction Festival there has been “a ‘boom’ in fiction about dementia, reflecting the rise in the condition itself and society’s need to understand it.”²⁸ This growth in interest is also evident beyond literature – in mainstream media, theatre, cinema, and the visual arts. As examples, in theatre this ranges from contemporary rereadings of Shakespeare’s 1608 play King Lear in relation to Alzheimer’s,²⁹ to Florian Zeller’s theatre production Le Père (2012),³⁰ which was adapted for cinema as The Father (2020).³¹ Popular novels have likewise been transposed to cinema and television, such as Still Alice (2007,³² 2014³³) and Elizabeth is Missing (2014,³⁴ 2019³⁵) respectively. As to the visual arts, approaches to dementia span diverse media including moving image, installation, photography and more, and pertinent examples will be discussed in the following thesis.

All of these areas of enquiry – medical, philosophical, cultural – approach dementia in diverse but overlapping ways, and at the centre of this circle of concern are people living with conditions. In some sectors, these are increasingly (if slowly) ceasing to be objects of research by becoming participants: they may still contribute as subjects of studies but, when able and enabled, they also help to actively shape enquiries as ‘experts by experience’³⁶ – acting as consultants, taking part in conferences, and so on.³⁷ All the same, what isn’t changing much for them in parallel is life on the ‘front line’ in the sense that there are still symptoms to contend with. Regardless of whatever scientific, social, political or philosophical – or, indeed, creative – theories and practices may shape the landscapes in which they live, until there are viable treatments the ways in which they can perceive themselves and their circumstances are limited by the effects of dementia as medical condition. However, the scientific, social, political and philosophical – the cultural – forces that shape our understandings and ideas about dementia do have real impact on how they live because they change how we, as people not living with the condition, live with them. For example: “The move from conceptualising dementia as a natural consequence of ageing to its bio-medicalisation is evidence in how this condition can be re-conceptualised.”³⁸ Very briefly, we have advanced from ancient historical positions that considered symptoms as a normal part of the ageing process, through views of these as constituting debilitating senility – as mental afflictions requiring institutionalisation in asylums – to more recent, inclusive approaches to people as ‘living with’ rather than ‘suffering from’, and efforts to create dementia-friendly environments and practices. So, though it may take time (and there is still much room for improvement), shifts in thinking do provoke change, and this research proposes that the visual arts – and the hybrid approaches deployed in my research in particular – have the capacity to help affect attitudes towards dementia.

With this in mind, an aim of this creative practice research was to test the potentials of lens-based media in the creation of models of cognition, intended as a means of reaching understandings of processes such as perceptual misinterpretation, spatio-temporal disorientation, and memory loss. The idea central to the work is that the cognitive ambiguity that is dementia can be creatively apprehended and visualised by way of lostness, the concept that links all aspects of the doctoral project. This is not a lostness directly related to dementia – an ‘explaining’ or theorising of dementia as ‘lostness’ is not entirely appropriate or indeed adequate to the task of wholly addressing the complexities and existential ambiguities of diverse lived experiences of cognitive decline. No, the lostness I’ve had in mind is based on that derived from Solnit, of familiarity and unfamiliarity combined, despite their seeming incompatibility. This way of understanding lostness has served as a lens through which to consider dementia, however – as a way to ‘see’ in facets of dementia things in which I may find empathic connection through partial familiarity, even while knowing the full implications of any experience of it may never be directly known to me. Regardless of whether or not one has dementia, encounters with the familiar and unfamiliar combined are rooted in feeling – for example, the pleasure or discomfort we may sense when chancing upon things normally well known to us in unexpected ways. In a creative practice research project aimed towards apprehending aspects of the lived experiences of others, this understanding of lostness as embodied sensation and perception means that it is not just a conceptual conceit.

Despite the importance of lostness to this research, it was not my intention to use it as a method; there was no plan to develop any kind of creative process involving randomness as a means of generating material for use in practical work outcomes. However, from the start and increasingly as my work progressed I became aware that innovative creative research in and of itself is not a linear process: that it can be, as Charlotte Wegener proposes, the aggregation of ‘knot-working’ – defined as “the combination of different kinds of knowledge to achieve new insights”³⁹ – and ‘not-knowing’ or “getting lost as a strategy of finding one’s way through… analysis and representation”.⁴⁰ The latter draws directly on a ‘lostness as methodology’ theorised by Patti Lather as an “embracing of constitutive unknowingness, generative undecidability, and what it means to document becoming”; a “learning otherwise in response to the wholly other, the elusive object, the multiple world.”⁴¹ In the present research, the ‘wholly other’ and ‘elusive object’ principally under investigation is the lived experience of dementia. Defined by Wegener as “a state of involuntary not-knowing”,⁴² it can also be described as an ‘unknowing’ – with which parallels can be drawn to questioning about the nature of art-as-research framed, for instance, by Katy Macleod and Lin Holdridge in the query: “Could it be that in the process of more clearly addressing the making of art, we might enter into an intimate space of unknowing?”⁴³

Dementia has been termed an invisible⁴⁹ or non-visible⁵⁰ disability. Despite this, existing lens-based approaches to it, for instance in contemporary photography and public awareness campaigns alike, largely tend to portray individuals who look no different to people not living with the condition. While there is great value in individual stories, as a strategy for interrogating dementia this approach has limitations. According to Alzheimer’s Society, the number of people living with dementia in the UK is estimated at 900,000 (with a projected rise to around 1.6 million by 2040),⁵¹ and there’s a limit to how many individual stories we can take on board.⁵² Also, as dementia is an invisible disability, does this kind of imagery tell us anything about the condition, and what it’s like to live with it? It is in part for this reason that my own research investigates alternative approaches, by thinking of it as lived experience and so attempting to look into rather than at it, as means of reaching degrees of understanding.

Given the central importance of photography to my research, a chapter of this thesis has been dedicated to theories most appropriate to the ways in which I have used the medium, to how people living with dementia also use it, and to how it relates to vision, perception and memory. Over the decades since I started considering myself a photographer (beginning in 1985 during my Graphic Design BA), the field of photographic theory has greatly expanded and diversified, and access to even the most arcane of writings has become increasingly easier thanks to the internet. Not all of the available texts about the medium are appropriate in every circumstance, however. In the case of my own research, for which I have not photographed people living with dementia, or made use of appropriated imagery of or by them, critiques of the medium in terms of its exploitative aspects are not applicable – it’s hard to see, for example, how Ariella Aïsha Azoulay’s acclaimed scholarship on photography in relation to imperialism⁵³ can meaningfully relate to images of cauliflowers and false teeth in works about clouded thought and misperceptions, or to the photographs people living with dementia make of the contents of their kitchen cupboards. As such, certain oft cited critics of photography, that tend to be considered ‘usual suspects’ in discussions of the medium,⁵⁴ have been omitted in favour of references I have deemed to be more pertinent, given the nature of the work I am defending here.

Wayfinding

This formal written element of my enquiry has been organised into four sections:

• CLOUDS, in which I trace the origin of this doctoral project’s title, discuss the relevance of metaphor to dementia, and provide examples of its related usage in literature;
• UNKNOWING, in which I refine the definition of lostness, expand it to include theological and medical definitions of agnosias as ‘unknowings’, and consider differing approaches to narrative identity in relation to cognitive decline;
• PICTURING, in which I review photographic approaches to dementia, discuss the dimensionality of photography (in the sculptural practices of two artists not previously considered together) and, by reconsidering it from the perspective of cognitive decline, reveal the importance of interpretation to our understanding of the medium;
• PHOTOGRAPHY, LOSTNESS, AND COGNITIVE DECLINE, in which I further contextualise my creative practice research as I relate its outcomes.

In this thesis I situate my project not only in relation to dementia and lostness as concept, but also relative to selected approaches to dementia in the broader arts, as portrayed in photography, moving image, theatre and literature. It’s beyond the scope of this research to comprehensively review all of these, but in what follows relevant examples are discussed where appropriate. Artists Sophie Calle, Helen Chadwick and Alina Szapocznikow have been specifically considered for the ways in which certain works by them sit at the intersections of photography, as image/object/text, with evidence and remembrance, absence and presence, familiarity and unfamiliarity. They appear not as discrete case studies but seeded in where reflection on aspects of their work help clarify points of theory and thoughts about photography. Specific literary references such as Samuel Beckett, J. Bernlef, Shirley Kaufmann, Marcel Proust and W.G. Sebald are likewise discussed in appropriate chapters.

I use the term dementia throughout unless a type requires direct reference. As Alzheimer’s is globally considered to be the most prevalent kind, and as such has been most intensively investigated for the greatest length of time, unless otherwise specified the majority of the studies referenced are drawn from research into it, and the symptoms I have focussed on in my work are largely to be found in this form of cognitive decline.

I have done my best to structure this thesis in as linear a fashion as possible, but this is a research project centred in the concept of lostness. The process often pulled me in unexpected directions, most of which turned out to be surprisingly worthwhile. For instance, I didn’t expect to find myself focussing quite so intently on literature, even after I realised how important creative writing would be to my work. The labyrinthine complexity and breadth of an enquiry spanning several very diverse disciplines is not entirely evident in either the resultant creative practice outcomes or the writing about the research that led me to them. But there are areas in what follows where I do ‘talk’ you, the reader, through stretches of meandering reflection, as this is how I beat paths through to conclusion. And if I could find my way, I’m confident you can too.

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