A Posthumanist Perspective on Dementia (original) (raw)

Critical perspectives on personhood and dementia

Critical Dementia Studies: An Introduction (eds. Richard Ward & Linn J. Sandberg), 2023

Near the end of the film Blade Runner (1982), Roy Batty, the dying humanmachine 'replicant' played by actor Rutger Hauer, reflects upon his short life in a touching well-known monologue, lamenting that 'All those moments are lost in time, like tears in rain'. Batty's words not only express the fleeting value of a life's accumulated experience and knowledge in the face of death, but also evoke or at least perform his human-like emotions, despite the short duration of his mercenary existence. Thus, Batty's status is confusingly liminal, as evident by the surprised reaction of character Rick Deckard (Harrison Ford), the detective sent to hunt him down. Here, liminality exists not between types of life transitions nor biographical trajectories, but between different types of selves encountering each other: Batty is both 'us' and 'not us', and while we are intrigued by the appearance of his humanity, we also distrust the dangerous unpredictability of his not-really-human brain, even as he clings to his losses in a very human way. This cinematic scene is evocative of the self-other liminal status familiar to us because it frames encounters with individuals diagnosed with dementia, 1 where interior, personal life is assumed to be continually fragmenting, unreliable and uncontrollable. In large part, this assumption is due to the historical construction of Euro-Western concepts of personhood itself, characterised by certainty, rationality, agency, memory and individuality (Laceulle, 2018). These are also enduring culture-bound ideals with their own moral prescriptions (Leibing, 2019). In the dementia field, throughout the 20th century, these assemblages of personhood merged at first with a disease-based model of dementia and the medicalisation of those diagnosed with it. Thus, they have also become the target of critical scholars who seek more tolerant and less restrictive understandings of the person with dementia. It is this juxtaposition between dementia and concepts of self and personhood, terms used interchangeably here, that this chapter examines. We are taking a closer look at how such concepts became embedded within the development of dementia research itself and, as a consequence, practices of care, along with the critical ideas they inspired. Our position follows Barbara Prainsack's assertion that '[t]he key to … medicine that fosters solidarity and is sensitive to people's needs lies in being cautious about what 6 'Lost in time like tears in rain'

Preserving personhood in dementia research: a literature review

International Journal of Older People Nursing, 2006

The aim of this literature review was to investigate studies that actively engage older people with dementia in research ‘with’ rather than ‘on’ them. The focus of the paper is the methods that researchers have used to ensure that studies are ethical, meaningful and preserve the personhood of individuals. The intention is to present a selection of papers rather than undertake an exhaustive review. It is well recognized that the prevalence of dementia in older adults is increasing, this increase is reflected by a huge rise in the amount of research into this area. The biomedical model continues to dominate dementia research however there is a small, but growing, body of research that actively seeks to engage people with dementia. This increase in research that actively engages people with dementia has developed in parallel with the ‘new culture’ of dementia care in which Kitwood (Dementia Reconsidered: The Person Comes First. Open University Press, Buckingham, 1997) exhorts us to respect the personhood of people with dementia. This review identifies 22 studies that sought the views and experiences of older people with dementia. There is evidence in each paper that the researchers had given thought to ensuring that their work was ethical, meaningful and preserved the personhood of individuals. The skill with which this aim was achieved varied considerably from formulaic approaches to those that clearly demonstrate that the researchers have a mindset that is grounded in a powerful belief in, and application of, the concepts of genuine respect for older people with dementia. The examples of good practice that have been drawn from these papers have direct application to both future research and to the provision of clinical care.

Personhood, Dementia, and Bioethics

Cambridge Quarterly Healthcare Ethics, 2025

Jennifer Blumenthal-Barby (2024) has called for bioethics to end talk about personhood, asserting that such talk has the tendency to confuse and offend. It will be argued that this has only limited application for (largely) private settings. However, in other settings theorizing about personhood leaves a gap in which there is the risk that the offending concept will get uptake elsewhere, and so the problem Blumenthal-Barby nominates may not be completely avoided. In response to this risk, an argument is presented in support of the idea that the role of philosophers and bioethicists, far from ending talk of personhood, ought to be to clarify the concept, and to do so in nuanced ways, given its application for specific kinds of impairments. The case of dementia is used to illustrate this in the context of person-centered care. Ironically, given the stigma attaching to dementia, far from the need to end talk of personhood, bioethicists are needed to rescue the concept and to clarify its role.

Dementia and human rights

Dementia and human rights, 2018

Launching the dementia debate into new and exciting territory, this book applies a human rights lens to interrogate the lived experience and policy response to dementia.

The potential for lifelong learning in dementia: a post-humanist exploration

International Journal of Lifelong Education

Numbers of people with dementia are projected to grow to 682 million globally by 2050 (Batsch & Mittleman, World Alzheimer's Report, 2012). However, despite this escalation, the widely-promoted positive vision of lifelong learning throughout all ages does not extend to people with dementia. Constructions of learning for those with dementia are predominantly limited to the management of symptoms. The focus on retrieval of memory does not seem to allow for the emergence of the learner as a 'new beginner' (Biesta, 2015). This paper focuses on a current study, Beyond Words, to challenge dominant assumptions about dementia and learning. Using a posthumanist theoretical framework, this longitudinal qualitative study explores the benefits of community music for those who face problems communicating with words: such as those with dementias, autism, learning difficulties and brain damage. Rather than characterizing them as 'non-verbal' it positions them as 'postverbal' and able to communicate in different ways. Moving away from discussions of 'selfhood', the paper uses a posthumanist approach to explore an agentic assemblage including one person with dementia from the study and also explores how another participant experiences materiality and time. It demonstrates that learning and 'new beginnings' and 'becomings' can and do take place at advanced stages of dementia, challenging the assumption that dementia is a wasteland for learning. It also shows how people with dementia have much to teach researchers about living and learning.

Rights in mind: Thinking differently about dementia and disability

Dementia, 2017

The aim of this paper is to argue for the utility of a relational model of disability, as a way of conceptualizing dementia. We explore whether dementia should be considered as a disability, and whether people with dementia might consider themselves as disabled people. We review examples of, and issues raised by, the political activism of people with dementia. We consider how language constructs dementia negatively. We discuss how the environment influences the experience of dementia. In conclusion, we show that a relational model of dementia lays the basis for a human rights approach to the condition, based on collaborative partnerships between people with dementia and people from other disability communities. Keywords Human rights, models of disability, environmental barriers, activism the social barriers faced by people with illnesses and impairments. However, this classic social model approach does not fully account for the complexity of the disability experience (Shakespeare 2006), and so we will argue that it cannot do the required job in terms of dementia. Our suggestion in this paper is that a more innovative approach to dementia is required. This approach must give appropriate weight both to the condition itself, and to the social relations within which people with the condition, and their families, live. Dementia, like disability in general, is a multi-dimensional phenomenon, and requires a response that addresses different aspects, including clinical, psychological, social, and political. We suggest that regarding dementia as a disability could be beneficial for people living with dementia. As noted by Angus and Bowen-Osborne (2014): "Disability and illness narratives can provide us with the opportunity to circumvent a reliance on a description of the physical impairment and expose attitudes and practices imposed upon a person…" We are also interested in whether categorizing dementia as a disability may help us to explore some of the ways that barriers and discourses shape experiences of the condition. Perhaps most importantly, we hypothesize that seeing dementia as a disability could place people with dementia, as self-advocates, at the centre of their own stories, and help provide an enabling identity. Dementia as disability We need to start by asking whether or not dementia is a disability (or impairment, to use social model language, see Oliver 1990). This is different from the question of whether people with dementia consider themselves disabled. The first question can be answered more or less objectively, the second question is subjective, depending on the attitudes, values and experiences of individual people with dementia themselves. The WHO International Classification of Functioning, Disability and Health defines disability as "an umbrella term for impairments, activity limitations and participation restrictions" (WHO, 2002, 2), referring to the negative aspects of the interaction between an individual with a health condition and that individual's contextual factors (environmental and

Bridging the gap between clinical and critical sociological perspectives in dementia

BJPsych Advances

SUMMARY There is a widening gap between the medical model of dementia and critical sociological perspectives of the condition. Given the relative failure of reductionism in dementia and its rising prevalence, consideration of the utility of these critical viewpoints is warranted. This article considers how these ideas, which challenge some prevailing assumptions about dementia, can be meaningfully applied in conjunction, rather than in competition, with conventional clinical ideas. To illustrate this, current perspectives on selfhood, biopolitics, citizenship and post-humanism are discussed. This article may also help to articulate sociologically oriented approaches already used by some clinicians and legitimise the time and attention needed to explore and deliver these. We support the view that dementia is an episteme in the making and that different traditions and dispositions can fruitfully collide to enliven interdisciplinary conversations about dementia and dementia care.

Suzanne Cahill, Dementia and human rights

Dementia, 2019

During the early 21st century, human rights have become increasingly pertinent to dementia studies, simultaneously promoted through advocacy movements and the critical tradition. It is in this context that Dementia and Human Rights is best understood, as an attempt to establish some conceptual solidity within a relatively embryonic area of dementia scholarship. Cahill identifies a broad readership-policy-makers, health and social care professionals, students of many related disciplines and people affected by dementia-but the dementia studies and advocacy communities probably have the most to gain from this text and will undoubtedly find the contents deeply stimulating. The book has two parts. Part one outlines a "conceptual framework," while part two applies the resulting "human rights lens" to policy and practice. Opening chapter one, Cahill champions the potential for a rights-based approach to improve understandings of dementia and identifies the book's major intellectual influences: disability studies, social constructionism, critical social gerontology and human rights. Chapter two reviews the biomedical, social and biopsychosocial models of both disability and dementia to argue that dementia is a disability. The chapter concludes with some consideration of the UN Convention on the Rights of Persons with Disabilities (CRPD). Cahill argues that, despite the CRPD omitting "cognitive impairment," dementia falls under the convention by virtue of its characteristic impairments. Chapter three progresses to outline the CRPD's development, influences, aims and articles, before highlighting several recent political initiatives toward a disability rights approach to dementia. Part two begins with chapter four, centring on non-institutional care by focusing on the rights to equal legal recognition, early diagnosis, rehabilitation and independent living in the community. Chapter five turns to institutional care by considering the rights to freedom from mistreatment, privacy, environmental accessibility and meaningful participation. Both chapters outline examples of progress in realising those rights, alongside the many ways in which they are contravened. Chapter six considers the emerging impact of human rights in dementia-specific policy and practice, advocating a strengthening of this influence. Chapter seven, written by Eilion oir Flynn, returns in greater depth to the issue of legal recognition. The portrayal of the topic is outstanding, a must-read for anybody interested in capacity. Chapter eight concludes the book on a positive note, suggesting several ways in which dementia rights are likely to be strengthened over coming years.

Personhood beyond the personal archive: dementia and remembering together

I would like to write about the lessons I learnt from encountering dementia-knowing that the contiguity of these concepts needs explanation: dementia and encounter, dementia and learning. Caring is an intimate experience, its language-for me-is in the first person singular. By speaking in the plural, I want to mark the contours of an invisible community to which I belong: a vast but unacknowledged group of people whose loved ones live with dementia. It is a community whose needs have fallen out of sight of the Hungarian welfare system along with the needs of those living with the disease.