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Ruth Bartlett - Life at Home for People with a Dementia

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Life at Home for People with a Dementia provides an evidence-based and readable account of improving life at home for people with a dementia and their families. There are estimated to be 47 million people with a dementia worldwide, the majority of whom will live, or want to live, in their own home. Yet there is a major shortcoming in available knowledge on what life is like for people with a dementia living at home. Most research focuses on care in hospitals or care homes, and takes a medical perspective. This book bridges this gap in knowledge by providing a comprehensive and critical overview of the best available evidence on enabling people with a dementia to live well at home from the viewpoint of those living with the condition, and in the context of global policy drivers on ageing and health, as well as technological advances.

The book includes chapters on citizenships that is, the diversity of people living with a dementia enabling life at home, rethinking self-management, the ethics and care of people with a dementia at home, technological care and citizenship, and sharing responsibilities. It concludes with a care manifesto in which we set out a vision for improving life at home for people with a dementia that covers the areas of professional practice, education and care research.

By covering a wide range of interrelated topics to advance understanding and practice as to how people with a dementia from diverse backgrounds can be supported to live well at home, this book provides a synthesised, critical and readable understanding of the complexities and risks involved.

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LIFE AT HOME FOR PEOPLE WITH A DEMENTIA Life at Home for People with a - photo 1
LIFE AT HOME FOR PEOPLE WITH A DEMENTIA
Life at Home for People with a Dementia provides an evidence-based and readable account of improving life at home for people with a dementia and their families. There are estimated to be 47 million people with a dementia worldwide, the majority of whom will live, or want to live, in their own home. Yet there is a major shortcoming in available knowledge on what life is like for people with a dementia living at home. Most research focuses on care in hospitals or care homes, and takes a medical perspective. This book bridges this gap in knowledge by providing a comprehensive and critical overview of the best available evidence on enabling people with a dementia to live well at home from the viewpoint of those living with the condition, and in the context of global policy drivers on ageing and health, as well as technological advances.
The book includes chapters on citizenships that is, the diversity of people living with a dementia enabling life at home, rethinking self-management, the ethics and care of people with a dementia at home, technological care and citizenship, and sharing responsibilities. It concludes with a care manifesto in which we set out a vision for improving life at home for people with a dementia that covers the areas of professional practice, education and care research.
By covering a wide range of interrelated topics to advance understanding and practice as to how people with a dementia from diverse backgrounds can be supported to live well at home, this book provides a synthesised, critical and readable understanding of the complexities and risks involved.
Ruth Bartlett is Associate Professor in the School of Health Sciences, University of Southampton, UK, and Director of the Universitys Dementia Care Doctoral Training Centre. Ruths research interests are cross-disciplinary and related to people with a dementia, health activism, ageing and participatory research methods, including diary method. Ruth has published academic work and led social research studies in these areas, including most recently a project funded by the Alzheimers Society on the use of GPS location technologies by people with a dementia and their families.
Tula Brannelly is Lecturer in the School of Health and Social Sciences at Bournemouth University, UK. Tula has a longstanding interest in the experiences of people with a dementia, and has spent many years in research, education and practice. Tulas interest is in the impacts of health and social policy and is informed by an ethics of care. Tula is interested to understand more about how citizenship and care are facilitated with people with a dementia.
LIFE AT HOME FOR PEOPLE WITH A DEMENTIA
Ruth Bartlett and Tula Brannelly
Life at Home for People with a Dementia - image 2
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
The right of Ruth Bartlett and Tula Brannelly to be identified as authors of this work has been asserted by them 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
Names: Bartlett, Ruth, 1965- author. | Brannelly, Tula, author.
Title: Life at home for people with a dementia / Ruth Bartlett and Tula Brannelly.
Description: Milton Park, Abingdon, Oxon; New York, NY: Routledge, 2018. | Includes bibliographical references and index.
Identifiers: LCCN 2018005054 | ISBN 9781138084742 (hbk) | ISBN 9781138084780 (pbk) | ISBN 9781315111650 (ebk)
Subjects: LCSH: DementiaPatientsHome care. | DementiaPatientsFamily relationships. | Caregivers.
Classification: LCC RC521 .B372 2018 | DDC 616.8/31dc23
LC record available at https://lccn.loc.gov/2018005054
ISBN: 978-1-138-08474-2 (hbk)
ISBN: 978-1-138-08478-0 (pbk)
ISBN: 978-1-315-11165-0 (ebk)
Typeset in Bembo
by Deanta Global Publishing Services, Chennai, India
We would like to dedicate this book to all those we have met living with a dementia who have inspired us to write it. Thank you for your perseverance, insights, citizenship and humour.
CONTENTS
PART I
Understanding life at home
PART II
Towards social justice
Alzheimers Eponymous Ghost
At the front door
In the first smile of Spring
You are the first stopped
By a soft draught of wisteria perfume.
It seems also to summons
The subtle sound of wavering music
And with the first step you identify
The harmonious chorus of the bees.
Scent and sound are energies of the air
But after the attrition of consciousness
The sense of historical self dissolves
Into a hopeless diagnosis.
In that terrain you are an outcast guest
Exhausting the last atoms of identity
Enduring the dwindling voltage to the end
Like the famished vision of Alzheimers
eponymous ghost
Shocking family and friends with nothing
To understand or share
A dear wife, a son, a daughter
This year a Summers bride .
A poem by Atherton Gray
Home is where the heart is is a saying we have all heard. But for people with a dementia I suggest it is more than that.
Home also represents stability. Order. Routine. Because without that were flailing. Disoriented. Lost.
It is easy to say I want to live at home, but not always so easy to put in place effectively, efficiently or, really, helpfully. Why not? Why is care at home for a person with a dementia diagnosis so challenging?
Are expectations too high for quality in-home care for our loved ones with a dementia? Is a caregivers view of dementia so wildly different from the rest of society? Why do we seem to accept the lowering of the bar of expectations for people living a dementia diagnosis?
To set the stage, let me first share a few numbers. For the 2018 Alzheimers Awareness Month, the Alzheimer Society of Canada commissioned a survey that found that 46% of Canadians would feel ashamed or embarrassed if they had dementia. And 27% thought their life would be over if they had a dementia.
Thinking specifically of home care, I was surprised and disappointed to read that only 39% would offer support for family or friends who felt able to be open about their dementia diagnosis.
Put together, I wonder if our reluctance to face dementia, understand it better and freely admit our concerns about it cloud our judgement and opinions. Do we too easily dismiss the individual as being old and maybe hard to take care of, leading some to ask, Why take the time and effort to make home safe and secure?
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