Popularizing Dementia

How are individual and social ideas of late-onset dementia shaped and negotiated in film, literature, the arts, and the media? And how can the symbolic forms provided by popular culture be adopted and transformed by those affected in order to express their own perspectives? This international and interdisciplinary volume summarizes central current research trends and opens new theoretical and empirical perspectives on dementia in popular culture. It includes contributions by internationally renowned scholars from the humanities, social and cultural gerontology, age(ing) studies, cultural studies, philosophy, and bioethics. Contributions by Lucy Burke, Marlene Goldman, Annette Leibing and others.

Taking its cues from both classical and post-classical narratologies, this study explores both forms and functions of the representation of dementia in Anglophone fictions. Initially, dementia is conceptualised as a narrative-epistemological paradox: The more those affected know what it is like to have dementia, the less they can tell about it. Narrative fiction is the only discourse that provides an imaginative glimpse at the subjective experience of dementia in language. The narratological modelling of four ‘narrative modes’ elaborates how the paradox becomes productive in fiction: Depending on the narrative perspective taken, but also on the type of narration, the technique for representing consciousness and the epistemic strategy of narrating dementia, the respective narrative modes come with different prerequisites and possibilities for narrating dementia. The analysis of four contemporary Anglophone dementia fictions based on the developed model reveals their potential functions: Fiction allows readers to learn about the challenges of dementia, grants them perspective-taking, it trains cognitive flexibility, and explores the meaning of memory, knowledge, narrative and imagination, and thus also offers trajectories of a cultural coping with dementia.

This book examines narratives of dementia in contemporary literary texts, studying what is now a pressing issue with deep political, economic, and social implications for many ageing societies. As part of the increasing visibility of dementia in social and cultural life, these narratives pose ethical, aesthetic, and political questions about subjectivity, agency, and care that help us to interrogate the cultural discourse of dementia. Contemporary Narratives of Dementia is a seminal book that offers a sustained examination of a wide range of literary narratives, from auto/biographies and detective fiction, to children’s books and comic books. With its wide-reaching theoretical and critical scope, its comparative dimension, and its inclusion of multiple genres, this book is important for scholars engaging with studies of dementia and ageing in diverse disciplines. Sarah Falcus is a Reader in Contemporary Literature at the University of Huddersfield, UK. She has research interests in contemporary women’s writing, feminism and literary gerontology. She is the co-director of the Dementia and Cultural Narrative (DCN) network. Katsura Sako is an Associate Professor of English, at Keio University, Japan. Her main field of research is in post-war/contemporary British literature, and she has particular interests in gender, ageing and illness. She is a member of the steering committee of the DCN network.

This book offers the first ever critical history of dementia studies. Focusing on the emergence of dementia studies as a discrete area of academic interest in the late 20th and early 21st centuries, it draws on critical theory to interrogate the very notion of dementia studies as an entity, shedding light on the affinities and contradictions that characterise the field. Drawing together a collection of internationally renowned experts in a variety of fields, including people with dementia, this volume includes perspectives from education, the arts, human rights and much more. This critical history sets out the shared intellectual space of ‘dementia studies’, from which non-medical dementia research can progress. The book is intended for researchers, academics and students of dementia studies, social gerontology, disability, chronic illness, health and social care. It will also appeal to activists and practitioners engaged in social work and caregiving involved in dementia research.

This book puts the critical into dementia studies. It makes a timely and novel contribution to the field, offering a thought-provoking critique of current thinking and debate on dementia. Collectively the contributions gathered together in this text make a powerful case for a more politically engaged and critical treatment of dementia and the systems and structures that currently govern and frame it. The book is inter-disciplinary and draws together leading dementia scholars alongside dementia activists from around the world. It frames dementia as first and foremost a political category. The book advances both theoretical and methodological thinking in the field as well as sharing learning from empirical research. Outlining the limits to existing efforts to frame and theorise the condition, it proposes a new critical movement for the field of dementia studies and practice. The book will be of direct interest to researchers and scholars in the field of dementia studies and wider fields of health, disability and care. It will provide a novel resource for students and practitioners in the fields of dementia, health care and social care. The book also has implications for dementia policymaking, commissioning and community development. The Open Access version of this book, available at http://www.taylorfrancis.com, has been made available under a Creative Commons Attribution-Non Commercial-No Derivatives 4.0 license.

Focusing mainly on case studies from Australia and the United States of America, this book considers how people with dementia represent themselves and are represented in ‘theatre of the real’ productions and care home interventions, assessing the extent to which the ‘right kind’ of dementia story is being affirmed or challenged. It argues that this type of story — one of tragedy, loss of personhood, biomedical deficit, and socio-economic ‘crisis — produces dementia and the people living with it, as much as biology does. It proposes two novel ideas. One is that the ‘gaze’ of theatre and performance offers a reframing of some of the behaviours and actions of people with dementia, through which deficit views can be changed to ones of possibility. The other is that, conversely, dementia offers productive perspectives on ’theatre of the real’. Scanning contemporary critical studies about and practices of ‘theatre of the real’ performances and applied theatre interventions, the book probes what it means when certain ‘theatre of the real’ practices (specifically verbatim and autobiographical) interact with storytellers considered, culturally, to be ‘unreliable narrators’. It also explores whether autobiographical theatre is useful in reinforcing a sense of ‘self’ for those deemed no longer to have one. With a focus on the relationship between stories and selves, the book investigates how selves might be rethought so that they are not contingent on the production of lucid self-narratives, consistent language, and truthful memories.

“In this masterful book, Julian Hughes makes a convincing case that many acts in clinical and care practice are ethical matters. Hughes takes us gently through a jungle of philosophical ideas and explores a series of ethical issues in dementia care, such as diagnosis, covert medication and end of life care. His humanity shines through as he favours a values-based approach to care, and concludes by declaring (in the spirit of Tom Kitwood) that the person must be placed first in order to do what is right and good for people living with dementia. A must-have volume for practitioners, social scientists and enlightened general readers.” Tom Dening, Professor of Dementia Research, School of Medicine, University of Nottingham, UK “This book is totally brilliant. The outstanding author Dr. Julian Hughes must now be considered the foremost ethicist of his generation when it comes to caring for individuals with dementia … This is now the book that everyone who cares about dementia and ethics must read, discuss, and implement. It is a huge contribution.” Stephen G. Post PhD, Director, Center for Medical Humanities, Compassionate Care & Bioethics Stony Brook University School of Medicine, USA “This book should be an essential read for all of us who support and navigate the ethical issues relating to people with dementia and their families.” Paul Edwards, Director of Clinical Services, Dementia UK Ethical issues are involved in every decision that is made in connection with someone living with dementia – from decisions about care and treatment to decisions about research and funding. This book encourages the reader to reconsider ethics in dementia care with the use of ‘patterns of practice’, an innovative idea developed by the author. The book highlights the importance of understanding the person’s narrative, of good communication, high quality care, and expert interpretation of the meaning of situations for people living with dementia. This book: • Reviews ethical theories and approaches in connection with dementia care • Considers issues such as such as stigma, quality of life, personhood, and citizenship in relation to dementia • Looks at issues relevant to research ethics • Presents case vignettes to highlight a complete spectrum of ethical issues that arise in dementia care • Is accessibly written for multiple audiences – from people living with dementia to practitioners Dementia and Ethics Reconsidered is a comprehensive account of thought and practice in relation to ethical issues that arise in the context of dementia care, which seeks to show how ethical thinking can be put into practice and prove relevant to day-to-day experience. The Reconsidering Dementia Series is an interdisciplinary series published by Open University Press that covers contemporary issues to challenge and engage readers in thinking deeply about the topic. The dementia fi eld has developed rapidly in its scope and practice over the past ten years and books in this series will unpack not only what this means for the student, academic and practitioner, but also for all those affected by dementia. Series Editors: Dr Keith Oliver and Professor Dawn Brooker MBE. Julian C. Hughes was a consultant in old age psychiatry. Having trained in both philosophy and medicine, he was appointed honorary professor of philosophy of ageing at Newcastle University, UK and subsequently professor of old age psychiatry at the University of Bristol, UK. He was deputy chair of the Nuffield Council on Bioethics, UK.

The conceptualization of dementia has changed dramatically in recent years with the claim that, through early detection and by controlling several risk factors, a prevention of dementia is possible. Although encouraging and providing hope against this feared condition, this claim is open to scrutiny. This volume looks at how this new conceptualization ignores many of the factors which influence a dementia sufferers’ prognosis, including their history with education, food and exercise as well as their living in different epistemic cultures. The central aim is to question the concept of prevention and analyze its impact on aging people and aging societies.