Reconsidering Dementia Narratives

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.

As people are living longer on average than ever before, the number of those with dementia will increase. Because many will live a considerable time at home with their diagnosis, we need to know more about the ways people can adapt to and learn to live with dementia in their everyday lives. Lars-Christer Hydén argues in this book that to do so will involve re-imagining what dementia really is and what it can mean to the afflicted and their loved ones. One of the most important everyday opportunities for sharing experiences is the simple act of storytelling. But when someone close to you gradually loses the ability to tell stories and cherish the shared history you have together, this is seen as a threat to the relationship, to the feeling of belonging together, and to the identity of the person diagnosed. Therefore, learning about how people with dementia can participate in storytelling along with their families and friends helps to sustain those relationships and identities. In Entangled Narratives, Hydén not only emphasizes the possibilities that are inherent in collaborative storytelling, but instructs professionals and otherwise healthy relatives to learn how to effectively listen and, ultimately, re-imagine their patients and loved ones as collaborative meaning-makers in their lives.

Drawing on research evidence, logical analysis and his own experience, Tom Kitwood examines the subject of dementia. Breaking new ground, Kitwood scrutinises and reappraises many of the older ideas concerning dementia.

“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.

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.

The original Dementia Reconsidered: The Person Comes First by Tom Kitwood was published by Open University Press in 1997. It was a seminal text in the field of dementia studies and is still cited and referenced as core reading on person-centred dementia care. Tom died unexpectedly, just 12 months after the book was published. This book continues to inspire many people to challenge simplistic paradigms about dementia. Since the original book was written, however, there have been many changes in our understanding of dementia. The editor of this new edition, Dawn Brooker was mentored by Tom Kitwood. She has drawn together a remarkable group of writers to provide a commentary on Kitwood’s work. This new edition reproduces the original chapters but provides extra content from subject experts to update the book to a contemporary level. Dementia Reconsidered Re-visited is an ideal main text or supplementary text for all those studying or working in nursing, medicine, psychiatry, psychology, occupational therapy, social work, adult education, gerontology and health and social care more generally. “This important book does three things. It brings to a new generation the insight and vision of Tom Kitwood. It highlights the remarkable progress we have made in recent years. But most important of all it reminds us what still needs to be done if we are to fully respect the rights of people with dementia and their family care-givers. Kitwood inspired Alzheimer’s Society to knit together research, care, and societal change. We are now re-inspired to make sure all progress is evidenced and evaluated for its impact. We must realise the enormous opportunities the digital age offers people affected by dementia but in doing so constantly listen to and learn from their many and varied voices across nations and cultures.” Jeremy Hughes CBE, Chief Executive, Alzheimer's Society, UK

This collection of essays explores cultural narratives of care in the contexts of ageing and illness. It includes both text-based and practice-based contributions by leading and emerging scholars in humanistic studies of ageing. The authors consider care not only in film (feature and documentary) and literature (novel, short story, children’s picturebook) but also in the fields of theatre performance, photography and music. The collection has a broad geographical scope, with case studies and primary texts from Europe and North America but also from Hong Kong, Japan, Australia, Argentina and Mexico. The volume asks what care, autonomy and dependence may mean and how these may be inflected by social and cultural specificities. Ultimately, it invites us to reflect on our relations to others as we face the global and local challenges of care in ageing societies.

This book explores how person-centred health care could be refined to help persons alleviate pain-related distress and construct pain as a potentially positive experience. Rethinking Pain in Person-Centred Health Care is a fascinating contribution to the multidisciplinary literature on person-centred health care, pain and ethics. Traditionally, Western intellectual culture has downplayed the intuitive and emotional, promoting instead rational, natural-scientific perspectives. Applied to pain, an instrumental approach promotes the immediate and effective relief of pain, due to the widespread suffering and expense it can cause. However, different persons experience pain in different ways and Buetow moves beyond a commitment to eliminate pain to exploring how benefits of pain could include creating and managing meaning from pain. Rather than always looking to put pain behind them, persons may flourish by moving around pain, through pain, into pain and above pain. Buetow argues that this model depends on adopting a person-centred approach to health care, focusing less on the condition of pain and more on mobilizing the persons who present with, and manage, pain. This book will be of interest to professionals and academics/researchers in the fields of psychology and psychiatry who have a special interest in people with persistent pain conditions. It will also be an invaluable resource for physiotherapists, chronic pain consultants in secondary care and GPs.