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“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.
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.
“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.
“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.
“This is a book to be read by all involved in either side of this heated debate.” Dr C Fourcade, President of the French Association for Palliative Care, France "This powerful collection of essays brilliantly unpacks the legal, ethical and practical issues around the assisted dying debate.” Jonathan Herring, Professor of Law, University of Oxford, UK “This is an essential exploration of the complexities behind the sound bites.” Baroness Campbell of Surbiton DBE, UK “A much needed, timely compendium covering the main issues underlying and surrounding Assisted Dying.” Robert Twycross, Past Head, WHO Collaborative Centre for Palliative Care, Oxford, UK "Wherever your views lie on … assisted dying, you should read this book.” Dr Matt Morgan, Professor of Intensive Care, Cardiff University, UK, and Curtin University, Australia At a critical moment in the UK debate, this book provides up-to-date reflections from a broad variety of international experts on the profoundly important issues that surround changes in the law in any jurisdiction in connection with assisted dying and considers the realities that surround such changes. The Reality of Assisted Dying covers all the important issues in the debates about assisted suicide and euthanasia. This includes thoughts on the role of the law, discussion of important philosophical and ethical concepts, investigating the various issues that arise in the practice of medicine and palliative care, and scrutinizing concerns about definitions, coercion, consequences and safety. This book: Provides up-to-date data, evidence and reflections from professionals from countries where assisted dying has been legalized; Takes a fresh look at the arguments around legalization of assisted dying; Shows how a change in the law must take account of all those who will be affected, including families and those who will feel compelled to participate by assisting suicides or performing euthanasia; Shows the problems and dangers of embedding assisted dying within healthcare, and explores how alternative socio-legal procedures would improve legitimacy and monitoring for patients and their families. The book is relevant to a variety of intellectual disciplines and to political and social debates both in the UK and internationally, as well as being of interest to general readers and students studying the many relevant subjects, from medicine, to law, sociology, politics, philosophy and ethics. Julian C. Hughes has studied and been a professor of both philosophy and of old age psychiatry. He was an NHS consultant in old age psychiatry and served as deputy chair of the Nuffield Council on Bioethics, UK. His most recent book was Dementia and Ethics Reconsidered, published by Open University Press. Ilora G. Finlay is a Crossbench Peer in the House of Lords, an honorary professor of palliative medicine at Cardiff University, UK, past President of the BMA and the Royal Society of Medicine. A founder director of Living and Dying Well, she co-authored Death by Appointment and led on legislation to encourage the availability of palliative care for all.
“Whoever you are, and whatever your background, if you want to know what makes a good systematic review, then get a copy of this third edition by Bettany-Saltikov and McSherry.” Dr Ray Samuriwo, Associate Professor in Nursing, School of Health and Social Care, Edinburgh Napier University, UK “This text should be a ‘go to’ for students from any health care profession, just because it has ‘nursing’ in its title – it should not be overlooked. This text is an asset to help any healthcare student successfully complete their undergraduate degree.” Amanda Blaber, Honorary Fellow College of Paramedics. Retired Senior Lecturer with over 20 years’ experience teaching nursing and paramedic students in several Higher Education Institutions “This book is a comprehensive resource to explain the what, when, why, and how to complete a systematic literature review. It is invaluable book for all nurses and health care professionals…” Margaret Spencer, Consultant Occupational Therapist OT360, UK This new edition of this best-selling book presents a fully revised and updated step-by-step guide to doing a literature review for students and professionals in the Nursing, Midwifery, Health and Allied Health professions. How to do a Systematic Literature Review in Nursing takes you through every step of the process of writing a systematic literature review, whether as part of an academic assignment or for publication, from start to finish. Key features of this edition include: A brand new chapter on ‘An Introduction to Meta-Analysis’, An expanded range of case studies from across the allied health disciplines, Practical tips, templates, questions and answers and key points to help deepen learning. From writing your review question to writing up your review, this practical book is the perfect companion if you are doing your first literature review for study or clinical practice improvement. The text follows a logical ordering, taking readers through all the key steps in a literature review. Written in an easy-to-follow format, the text provides a comprehensive and accessible resource of practical tips, summary’s, and templates to work through as part of the review process. It is a must buy for undergraduate or postgraduate Nursing, Midwifery, Health, and Allied Health students and professionals. Josette Bettany-Saltikov is Senior Lecturer in Research Methods at Teesside University, Centre for Rehabilitation and Centre for Public Health, School of Health and Life Sciences, UK. She has taught research methods to nursing students and other allied health care professional students for over 30 years. Robert McSherry is Professor of Nursing and Practice Development, Centre for Ageing and Mental Health, Faculty of Health, Medicine and Society, University of Chester, England, UK.
“This exciting and unique book provides a significant collection of the research base and theory surrounding leisure and dementia.” Dr Mary O’Malley, BSc, PhD, CPsychol, Senior Research Fellow, Association for Dementia Studies, University of Worcester, UK “This is the most important edited collection to emerge from leisure studies in the last thirty years.” Professor Karl Spracklen, School of Humanities and Social Sciences, Leeds Beckett University, UK “This book is a novel collection of works that not only broadens and enriches our understandings of the importance of leisure for people living with dementia, but in demonstrating the possibilities for living well with dementia through engagement with leisure, it helps to build the foundation for developing an ethical standard to support such engagement to the fullest extent possible.” Pia Kontos, Senior Scientist and Professor, KITE Research Institute, Toronto Rehabilitation Institute – University Health Network, and Dalla Lana School of Public Health, University of Toronto, Canada This book examines leisure in the everyday lives of people living with dementia and challenges readers to consider the role of leisure activities beyond their potential for therapeutic benefit. Leisure and Everyday Life with Dementia emphasises how leisure offers people living with dementia opportunity to realise their citizenship through participating in leisure in everyday life. It explores the role of society in enabling this through giving equal chances to make choices about how, when and where people participate. This book: • Examines diverse kinds of leisure, including sports, music, travel, nature, and the online world • Contains accessible summaries and ‘So what does this mean in practice?’ sections at the end of each chapter • Has been co-edited and written with a guiding vision provided by a person living with dementia • Contains contributions from authors across the world and across multiple disciplines. Leisure and Everyday Life with Dementia is essential reading for anyone whose study or work in nursing or social care, occupational therapy, social work, arts therapies, arts, health and wellbeing, sports and exercise, or gerontology includes an interest in dementia. 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 Karen Gray is a researcher at the University of Bristol, UK. She has wide-ranging experience in researching and evaluating engagement in arts and creative activity for health and wellbeing. Dr Chris Russell is Senior Lecturer with the Association for Dementia Studies at the University of Worcester, UK, where he is Programme Lead for the Post Graduate Certificate in Dementia Studies. Jane Twigg has a background as a physiotherapist. This was before caring for her mom, who had dementia, including supporting Mom to continue to live in the world. Jane is now living with atypical dementia. She has a passion for life. Long distance walking brings her most joy, giving her a sense of achievement and wellbeing.
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
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.
This handbook will raise awareness about the importance of health and well-being of people with disabilities in the context of the global development agenda: Leaving No-one Behind. There has been a growing discussion on how people with disabilities should be included in the global health landscape. An estimated one billion people have some form of disability, 80% of whom live in low- and middle-income settings. People with disabilities are more likely to be poor, with restricted access to health and social services, education, rehabilitation and employment. Despite this, people with disabilities are often overlooked in global health and development efforts. Furthermore, the COVID-19 pandemic has shown that unless systematically planned for and included in policies and programmes, people with disabilities remain at an increased risk of being adversely affected in times of humanitarian crisis and emergency disasters. Divided into eight sections: Disability and Health Frameworks Health Justice, Rights and Bioethics Gendering Disability Health Disability and Global Mental Health Disability and Access to Healthcare, Including Workforce Development Crises and Health Technology and Digital Health Disability, Ageing and Dementia Care This handbook covers the full range of topics pertaining to disability and global health including inclusive health; access to rehabilitation; global mental health and disability; medical training and disability; community based inclusive development for improving health and rehabilitation; maternal health and sexual reproduction; preventive care and health promotion for people with disabilities; health, disability and indigenous knowledges; bioethics and human rights; data protection; and health in the global south. It will be of interest to all scholars, students and professionals working in the fields of disability studies, health studies, nursing, medicine, allied health, development studies and sociology.