Reconsidering Neighbourhoods and Living with Dementia: Spaces, Places, and People


Book Description

“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.




Talking with Dementia Reconsidered


Book Description

“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.




Dementia and Ethics Reconsidered


Book Description

“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.




Ebook: Leisure and Everyday Life with Dementia


Book Description

“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.




Neighbourhoods and The Lived Experience of Dementia: Spaces, Places, and People


Book Description

"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.




Designing Environments for People with Dementia


Book Description

The ebook edition of this title is Open Access and is freely available to read online. This book systematically explores and assesses the quality of the evidence base for effective and supportive design of living environments for people living with Dementia.




Reducing the Impact of Dementia in America


Book Description

As the largest generation in U.S. history - the population born in the two decades immediately following World War II - enters the age of risk for cognitive impairment, growing numbers of people will experience dementia (including Alzheimer's disease and related dementias). By one estimate, nearly 14 million people in the United States will be living with dementia by 2060. Like other hardships, the experience of living with dementia can bring unexpected moments of intimacy, growth, and compassion, but these diseases also affect people's capacity to work and carry out other activities and alter their relationships with loved ones, friends, and coworkers. Those who live with and care for individuals experiencing these diseases face challenges that include physical and emotional stress, difficult changes and losses in their relationships with life partners, loss of income, and interrupted connections to other activities and friends. From a societal perspective, these diseases place substantial demands on communities and on the institutions and government entities that support people living with dementia and their families, including the health care system, the providers of direct care, and others. Nevertheless, research in the social and behavioral sciences points to possibilities for preventing or slowing the development of dementia and for substantially reducing its social and economic impacts. At the request of the National Institute on Aging of the U.S. Department of Health and Human Services, Reducing the Impact of Dementia in America assesses the contributions of research in the social and behavioral sciences and identifies a research agenda for the coming decade. This report offers a blueprint for the next decade of behavioral and social science research to reduce the negative impact of dementia for America's diverse population. Reducing the Impact of Dementia in America calls for research that addresses the causes and solutions for disparities in both developing dementia and receiving adequate treatment and support. It calls for research that sets goals meaningful not just for scientists but for people living with dementia and those who support them as well. By 2030, an estimated 8.5 million Americans will have Alzheimer's disease and many more will have other forms of dementia. Through identifying priorities social and behavioral science research and recommending ways in which they can be pursued in a coordinated fashion, Reducing the Impact of Dementia in America will help produce research that improves the lives of all those affected by dementia.




Social Isolation and Loneliness in Older Adults


Book Description

Social isolation and loneliness are serious yet underappreciated public health risks that affect a significant portion of the older adult population. Approximately one-quarter of community-dwelling Americans aged 65 and older are considered to be socially isolated, and a significant proportion of adults in the United States report feeling lonely. People who are 50 years of age or older are more likely to experience many of the risk factors that can cause or exacerbate social isolation or loneliness, such as living alone, the loss of family or friends, chronic illness, and sensory impairments. Over a life course, social isolation and loneliness may be episodic or chronic, depending upon an individual's circumstances and perceptions. A substantial body of evidence demonstrates that social isolation presents a major risk for premature mortality, comparable to other risk factors such as high blood pressure, smoking, or obesity. As older adults are particularly high-volume and high-frequency users of the health care system, there is an opportunity for health care professionals to identify, prevent, and mitigate the adverse health impacts of social isolation and loneliness in older adults. Social Isolation and Loneliness in Older Adults summarizes the evidence base and explores how social isolation and loneliness affect health and quality of life in adults aged 50 and older, particularly among low income, underserved, and vulnerable populations. This report makes recommendations specifically for clinical settings of health care to identify those who suffer the resultant negative health impacts of social isolation and loneliness and target interventions to improve their social conditions. Social Isolation and Loneliness in Older Adults considers clinical tools and methodologies, better education and training for the health care workforce, and dissemination and implementation that will be important for translating research into practice, especially as the evidence base for effective interventions continues to flourish.




Social Research Methods in Dementia Studies


Book Description

Traditionally, the most preferred social research methods in dementia studies have been interviews, focus groups and non-participant observations. Most of these methods have been used for a long time by researchers in other social research fields, but their application to the field of dementia studies is a relatively new phenomenon. A ground-breaking book, Social Research Methods in Dementia Studies shows researchers how to adapt their methods of data collection to address the individual needs of someone who is living with dementia. With an editorial team that includes Ann Johnson, a trained nurse and person living with dementia, this enlightening volume mainly draws its contents from two interdisciplinary social research teams in dementia, namely the Center for Dementia Research [CEDER] at Linköping University in Norrköping, Sweden and the Dementia and Ageing Research Team [DART] at The University of Manchester in Manchester, UK. Case examples are shared in each of the main chapters to help ground the social research method(s) in a real-life context and provide direction as to how learning can be applied to other settings. Chapters also contain key references and recommended reading. This volume will appeal to undergraduate and postgraduate students, as well as postdoctoral researchers, interested in fields such as: Research Methods, Qualitative Methods and Dementia Studies.