“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.

Several million Americans are afflicted with Alzheimer's disease or a related dementing disorder. For families, professional caregivers, policy makers, and the patients themselves, the challenges are immense and the economic costs are staggering. In Dementia and Aging Robert H. Binstock, Stephen G. Post, and Peter J. Whitehouse bring together experts in gerontology, geriatrics, psychiatry, neurology, nursing, ethics, philosophy, public policy, and law to examine the ethical, moral, and policy controversies surrounding dementia. The authors first present background information on dementia and related ethical and policy issues. The remainder of the book is divided into three parts. Part One conveys the difficulties experienced by dementia patients and their caregivers. Part Two deals with ethical and moral issues involved in decisions regarding treatment and care, including the highly controversial subject of euthanasia. Part Three lays out societal choices regarding the allocation of resources for treatment, care, and research on dementia.

Dementia is a topic of enormous human, medical, economic, legal and ethical importance. Its importance grows as more of us live longer. The legal and ethical problems it raises are complex, intertwined and under-discussed. This book brings together contributions from clinicians, lawyers and ethicists – all of them world leaders in the field of dementia – and is a comprehensive, scholarly yet accessible library of all the main (and many of the fringe) perspectives. It begins with the medical facts: what is dementia? Who gets it? What are the current and future therapeutic and palliative options? What are the main challenges for medical and nursing care? The story is then taken up by the ethicists, who grapple with questions such as: is it legitimate to lie to dementia patients if that is a kind thing to do? Who is the person whose memory, preferences and personality have all been transformed by their disease? Should any constraints be placed on the sexual activity of patients? Are GPS tracking devices an unpardonable interference with the patient's freedom? These issues, and many more, are then examined through legal lenses. The book closes with accounts from dementia sufferers and their carers. It is the first and only book of its kind, and the authoritative text.

There are always difficult day-to-day decisions to be faced when caring for a person with dementia. This book considers these ethical decisions in the context of relationships, treatment, safety and quality of life, offering practical guidance and advice.

“The voice of lived experience is ever growing and without doubt we should never miss an opportunity like this to listen, capture and learn from it.” Paola Barbarino, CEO, Alzheimer’s Disease International “This latest book will help so many people - those with dementia and their loved ones.” Victoria Derbyshire, British Journalist, Newsreader and Broadcaster “Talking with Dementia Reconsidered is a landmark, which will inspire professionals, researchers and the upcoming cohort of people whose lives are affected by dementia.” Tom Dening, Professor of Dementia Research, School of Medicine, University of Nottingham, UK “I would strongly advise all health and social care professionals to read this and rethink what they “know” about dementia.” Dr Hilda Hayo Chief Admiral Nurse and CEO, Dementia UK This book places people living with a diagnosis of dementia at its core, providing each person with the opportunity to express themselves whilst viewing their lives in relation to the Kitwood flower model. Authored by a person living with dementia, an experienced consultant clinical psychologist and a respected academic, the three combine to amplify and showcase the words of the Fifteen people living with dementia, in an original, authentic and unique way. This book: Gives readers transparent insight into the lives, hopes and fears of a diverse range of people living with various forms of dementia Shows how each petal of the Kitwood flower with love at its centre is a helpful framework for each person to describe their life Links the interviews with issues, frameworks, policy and practice Examines what stakeholders can take from this book to advance dementia care. Talking with Dementia Reconsidered truthfully adds to the growing knowledge base of what life with dementia is really like in an engaging and informative way. It is essential reading for anyone and everyone directly or indirectly affected by dementia through lived experience, studying dementia or working professionally to support those affected. 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 field 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. Dr Keith Oliver is an Alzheimer's Society Ambassador and Dementia Service User Envoy for Kent and Medway Partnership NHS Trust in the UK. He retired from being a head teacher when diagnosed with Alzheimer’s at age 55. Keith is Series editor for the Reconsidering Dementia Series. Reinhard Guss is Associate Fellow of the British Psychological Society and former Dementia Work Stream Lead for the Faculty of the Psychology of Older People (FPOP). Reinhard is a Consultant Clinical Psychologist and Neuropsychologist working within the National Health Service. Dr Ruth Bartlett is Associate Professor at the University of Southampton, UK, co-director of the University’s Doctoral Training Centre in Dementia Care and Principal Investigator of an interdisciplinary, cross-faculty research project funded by the Alzheimer’s Society.

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.

“This book holds the story of a monumental research effort… It provides a moving, thoughtful, understanding of what “neighbourhood” means and is a beacon for efforts aimed at improving the quality of life of all involved.” Steven R. Sabat, Professor Emeritus of Psychology, Georgetown University, Washington D.C., USA “It is indicative reading for educators, researchers, clinicians and policy makers nationally and internationally. By grounding the underpinning research in the lived experience of people with dementia, the book’s appeal extends to voluntary and community groups. Reading it is a must!” Assumpta Ryan, Professor of Ageing and Health, Ulster University, UK “A remarkable contribution to the ‘Reconsidering Dementia’ series.” Bob Woods, Emeritus Professor, Bangor University, UK This book provides research based insights into the lived experience of dementia, aging in place and the use of participatory and creative social research approaches in the field of dementia studies. For the first time the key findings of one of the UKs largest funded social science research projects, the Neighbourhoods study, are assembled into one accessibly written blueprint for dementia care aiding better understanding of the place and position of those living with dementia in the home and neighbourhood context. Reconsidering Neighbourhoods and Living with Dementia highlights the importance of home for people living with dementia and that neighbourhoods are seen to be relational, virtual, technological, connected, lived, remembered, and imagined, and to exist within and across time. The book is organised under five key parts: •The Lived Neighbourhood •Neighbourhoods, Measurement and Technology •Neighbourhoods and Big Data •Personal Well-Being and Neighbourhood Programme Support •Bringing it Together and Future Directions This comprehensive book is appropriate to a wide range of readers and disciplines including those living with dementia, the related health and voluntary professions, family carers, practitioners, academics, and students undertaking a variety of courses aligned to gerontology, dementia studies and human geography. 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 field 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. John Keady is a mental health nurse who has been involved in dementia care for over 30 years. Since 2006, he has held a joint appointment between the University of Manchester and the Greater Manchester Mental Health NHS Foundation Trust. He was the Chief Investigator of the Neighbourhoods study.