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Dementia has been widely debated from the perspectives of biomedicine and social psychology. This book broadens the debate to consider the experiences of men and women with dementia from a sociopolitical perspective. It brings to the fore the concept of social citizenship, exploring what it means within the context of dementia and using it to re-examine the issue of rights, status(es), and participation. Most importantly, the book offers fresh and practical insights into how a citizenship framework can be applied in practice. It will be of interest to health and social care professionals, policy makers, academics and researchers and people with dementia and family carers may find it revitalising.
Giving voice to the lived experiences of people with dementia across the globe, including Australia, Canada, Sweden and the UK, this critical and evidence-based collection engages with the realities of life for people living with dementia at home and within their neighbourhoods. This insightful text addresses the fundamental social aspects of environment, including place attachment, belonging and connectivity. The chapters reveal the potential and expose the challenges for practitioners and researchers as dementia care shifts to a neighbourhood setting. The unique ‘neighbourhood-centred’ perspective provides an innovative guide for policy and practice and calls for a new place-based culture of care and support in the neighbourhood.
What 'kind' of community is demanded by a problem like dementia? As aspects of care continue to transition from institutional to community and home settings, this book considers the implications for people living with dementia and their carers. Drawing on extensive fieldwork and case studies from Canada, this book analyses the intersections of formal dementia strategies and the experiences of families and others on the frontlines of care. Considering the strains placed on care systems by the COVID-19 pandemic, this book looks afresh at what makes home-based care possible or impossible and how these considerations can help establish a deeper understanding necessary for good policy and practice.
Many new pieces of technology can be beneficial to individuals living with dementia, including both hardware and software. This straightforward guide summarises the current research on this growing topic, and gives practical advice on how available technology can be used to improve the everyday lives of people with dementia. Looking at a range of available products, such as off-the-shelf computers and smartphones, to dementia specific applications and programs, it also addresses some common obstacles and barriers faced when introducing technology in dementia care. The past twenty years have seen an array of technologies developed to improve the day-to-day lives of people with dementia; this guide shows how they can be effectively used.
The time has come to further challenge biomedical and clinical thinking about dementia, which has for so long underpinned policy and practice. Framing dementia as a disability, this book takes a rights-based approach to expand the debate. Applying a social constructionist lens, it builds on earlier critical perspectives by bringing together concepts including disability, social inclusion, personhood, equality, participation, dignity, empowerment, autonomy and solidarity. Launching the debate into new and exciting territory, the book argues that people living with dementia come within the UN Convention on the Rights of Persons with Disabilities and therefore have full entitlement to all the rights the Convention enshrines. A human rights-based approach has not to date been fully applied to interrogate the lived experience and policy response to dementia. With the fresh analytical tools provided in this book, policy makers and practitioners will will gain new insights into how this broader perspective can be used to further promote the quality of life and quality of care for all those affected by dementia.
A groundbreaking exploration of the sociology of dementia — with contributions from distinguished international scholars and practitioners. Organised around the four themes of personhood, care, social representations and social differentiation Provides a critical look at dementia and demonstrates how sociology and other disciplines can help us understand its social context as well as the challenges it poses Contributing authors explore the social terrain, responding in part, to Paul Higgs’ and Chris Gilleard’s highly influential work on ageing Breaks new ground in giving specific attention to the social and cultural dimensions of responses to dementia
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.
“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.
“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 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.