Challenging Assumptions Around Dementia

This open access book explores the expectations surrounding dementia, what it ‘looks like’ and how people have been treated by others. It aims to raise awareness of the different types of dementia, and how they impact the brain, body, and lived experience, including experience of Alzheimer’s disease, Vascular Dementia, Posterior Cortical Atrophy, Frontotemporal Dementia, Semantic Dementia, and Lewy Body Dementia. The co-authors reflect on their experience with informal and formal care, before finishing with a focus on the spectrum of dementia research from clinical trials to user-led research. Throughout the book, co-authors have shared personal stories of how dementia has affected them and people with lived experience of dementia share what they wish people knew about living with the disease. Co-produced by people with lived experience of dementia, academics and health care professionals, this book is an accessible resource about dementia from the perspective of people actively involved in the field and essential reading for healthcare professionals wishing to learn more about the experience of this neuroprogressive condition, as well as policymakers, and members of the public.

With contemporary approaches based on theory and the lived experience of dementia, Occupational Therapy and Dementia is written using an occupational justice lens. It examines how core elements of how occupational therapy may support the person living with dementia through valued activity in continuing engagement in their lives, sustaining their identity and sense of purpose. This edited collection critically analyses traditional thinking about dementia practice from over 40 contributors, challenging readers to reflect and develop their work. Drawing on policy and legislation related to health and social-care, readers are given tools to focus their practice towards what is important to the person living with dementia. Most importantly, this book gives a voice to people living with dementia, emphasising their expertise. A combined emphasis on human rights and occupational justice for people living with dementia offers both a theoretical and practical frame to develop your occupational therapy practice.

What does a dementia diagnosis mean for an individual's sense of self? Christine Bryden shares her insider view on living with dementia and explains how a continuing sense of self is possible after diagnosis and as the condition develops. Encouraging a deeper understanding of how individuals live meaningfully with dementia, the book challenges the dominant story of people with dementia 'fading away' to eventually become an 'empty shell'. It explores what it means to be an embodied self with feelings and emotions, how individuals can relate to others despite cognitive changes and challenges to communications, and what this means for the inclusion of people with dementia in society.

“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 importance of recognising the knowledge and the needs of service users and engaging them more proactively within the care process is now widely acknowledged, but it is not always clear how this can come about. The Lived Experience of Mental Health highlights individuals’ own lived and felt mental health experience in order to share their expertise about mental health problems and the care offered. This text begins by exploring the importance of engaging with the internal world of those living with various mental health problems and reflecting upon personal narratives as means of expressing and sharing experience, as well as the status of these narratives as 'evidence'. The central section of the book looks at five commonly experienced mental health states: anxiety problems, depression, mood extremes, states of altered reality (linked, for example, with psychosis and schizophrenia) and impaired cognition (linked, for example, with dementia). The chapters look at how the mental state in question is experienced, including the experience of it in the context of the wider world, where health and social care services and the responses of other people play a part. Drawing on personal narratives from a wide range of sources, this text foregrounds the voices of experts by experience and relates them to the academic literature. The narratives collectively convey a breadth of experience including both concepts of struggling and living well with mental health issues. The book ends by outlining resources where a range of first-person narratives can be accessed, from online forums to films, and providing a strategy for teaching and learning associated with the exploration of lived experience narratives. Designed for health professionals working with people experiencing mental health problems, this illuminating text uses personal narratives to emphasise the importance of person-centred care and participation by services users in their own care. It will also be an interesting read for experts by experiences themselves as well as their families and friends.

The conceptualization of dementia has changed dramatically in recent years with the claim that, through early detection and by controlling several risk factors, a prevention of dementia is possible. Although encouraging and providing hope against this feared condition, this claim is open to scrutiny. This volume looks at how this new conceptualization ignores many of the factors which influence a dementia sufferers’ prognosis, including their history with education, food and exercise as well as their living in different epistemic cultures. The central aim is to question the concept of prevention and analyze its impact on aging people and aging societies.

How we understand and define qualitative data is changing, with implications not only for the techniques of data analysis, but also how data are collected. New devices, technologies and online spaces open up new ways for researchers to approach and collect images, moving images, text and talk. The SAGE Handbook of Qualitative Data Collection systematically explores the approaches, techniques, debates and new frontiers for creating, collecting and producing qualitative data. Bringing together contributions from internationally leading scholars in the field, the handbook offers a state-of-the-art look at key themes across six thematic parts: Part I Charting the Routes Part II Concepts, Contexts, Basics Part III Types of Data and How to Collect Them Part IV Digital and Internet Data Part V Triangulation and Mixed Methods Part VI Collecting Data in Specific Populations

Giving voice to the lived experiences of people with dementia across the globe, this text highlights the challenges presented as dementia care shifts to a community setting. Contributors address the social aspects of environment and, using a unique 'neighbourhood-centred’ perspective, provide an innovative guide for policy and practice.