Dementia as Social Experience
A diagnosis of dementia changes the ways people engage with each other for those living with dementia, as well their families, caregivers, friends, health professionals, neighbours, shopkeepers and the community. Medical understandings, necessary as they are, provide no insights into how we may all live good lives with dementia.
This innovative volume brings together an interdisciplinary group of researchers and practitioners to focus on dementia as lived experience. It foregrounds dementias social, moral, political and economic dimensions, investigating the challenges of reframing the dementia experience for all involved. looks at the relational aspects of dementia care, acknowledging and going beyond the notion of person-centred care. Collectively, these contributions highlight the social and relational change required to enhance life for those with dementia and those who care for them.
Engaging in a critical conversation around personhood and social value, this book examines the wider social contexts within which dementia care takes place. It calls for social change, and looks for inspiration to the growing movement for relational care and the caring society. Dementia as Social Experience is important reading for all those people who, in various ways, are living with dementia, as well as for those working in this area as clinicians, researcher and carers.
Gaynor Macdonald is a Social Anthropologist at the University of Sydney, Australia.
Jane Mears is Associate Professor of Social Policy at Western Sydney University, Australia.
Routledge Studies in the Sociology of Health and Illness
Financing Healthcare in China
Towards Universal Health Insurance
Sabrina Ching Yuen Luk
Socio-economics of Personalized Medicine in Asia
Shirley Hsiao-Li Sun
Fathering Children with Autism
Needs, Practices and Service Use
Carol Potter
Recovery, Mental Health and Inequality
Chinese Ethnic Minorities as Mental Health Service Users
Lynn Tang
Fertility, Health and Lone Parenting
European Contexts
Edited by Fabienne Portier-Le Cocq
Transnationalising Reproduction
Third Party Conception in a Globalised World
Edited by Risn Ryan Flood and Jenny Gunnarsson Payne
Public Health, Personal Health and Pills
Drug Entanglements and Pharmaceuticalised Governance
Kevin Dew
Dementia as Social Experience
Valuing Life and Care
Edited by Gaynor Macdonald and Jane Mears
www.routledge.com/Routledge-Studies-in-the-Sociology-of-Health-and-Illness/book-series/RSSHI
Dementia as Social Experience
Valuing Life and Care
Edited by Gaynor Macdonald and Jane Mears
First published 2019
by Routledge
2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN
and by Routledge
711 Third Avenue, New York, NY 10017
Routledge is an imprint of the Taylor & Francis Group, an informa business
2019 selection and editorial matter, Gaynor Macdonald and Jane Mears; individual chapters, the contributors
The right of Gaynor Macdonald and Jane Mears to be identified as the authors of the editorial matter, and of the authors for their individual chapters, has been asserted in accordance with sections 77 and 78 of the Copyright, Designs and Patents Act 1988.
All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers.
Trademark notice: Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe.
British Library Cataloguing-in-Publication Data
A catalogue record for this book is available from the British Library
Library of Congress Cataloging-in-Publication Data
A catalog record for this book has been requested
ISBN: 978-0-8153-7457-2 (hbk)
ISBN: 978-1-351-24181-6 (ebk)
Typeset in Times New Roman
by Wearset Ltd, Boldon, Tyne and Wear
Contents
Tables
Contributors
Meera Agar works at the University of Technology, Sydney, Australia, is Professor of Palliative Medicine at University of New South Wales, Australia and is a research project lead and chair of the advisory committee at HammondCare.
Ingrid Amgarth-Duff is a Research Assistant based at the University of Technology, Sydney, Australia.
Kirsten Auret is an Associate Professor at the Rural Clinical School of Western Australia, and a General Physician with speciality training in palliative care. Her research interests include advance care planning, medical education and palliative care.
Susanne E. Becker is an early career academic at the Wicking Dementia Research and Education Centre in Hobart, Tasmania. She teaches directly into the online Bachelor of Dementia Care and incorporates her research interests into unit content. She is also evaluating the impact of the Bachelor of Dementia Care as students translate their knowledge into practice. A registered nurse by background, she has worked in the acute, aged care and rural and remote settings from direct nursing care to leadership and management roles.
Simon Biggs is Professor of Gerontology and Social Policy, University of Melbourne, Australia, School of Social and Political Sciences/the Brotherhood of Saint Laurence. As an Executive member of the Cognitive Decline Partnership Centre he leads two research projects: public perceptions of dementia and the role of regulation in dementia care. His research interests include intergenerational relations, the ageing life course and public policy.
Aidan Bindoff is the statistician for the Wicking Dementia Research and Education Centre, Tasmania. He plays an important role in the statistical evaluation of data, both from students reflective comments through to laboratory experiments, to help document the role of the Wicking Centre in addressing the cause, care and prevention of dementia.
Meredith Blake is an Associate Professor at the University of Western Australia Law School who has published books and articles in the areas of criminal and health law. Her research particularly focuses on advance care planning, end-of-life decision-making, constructing criminal liability and elder law.
Romola S. Bucks is a Professor at the University of Western Australia School of Psychological Science, with research interests in ageing, Parkinsons disease, sleep disturbance and its impacts on emotional and cognitive functioning. She is also active in research on vulnerability and resilience to negative affect in ageing.
Sascha Callaghan is a lawyer and lecturer in health law and ethics at the University of Sydney Law School, Australia. She has published widely in the area of healthcare decision-making, mental health and cognitive impairment. She is currently a lead researcher in the Sydney Neuroscience Network and has interests in the intersection between neuroscience, law and ethics.
