June Andrews - Dementia

Dementia

THE ONE - STOP GUIDE

June Andrews is an international dementia specialist adviser, and Professor Emeritus in Dementia Studies. During her decade directing the University of Stirlings Dementia Services Development Centre, she co-wrote 10 Helpful Hints for Carers, a book on helping care for those with dementia, which has sold over 65,000 copies. She has received a Fellowship of the Royal College of Nursing (RCN), the highest honour awarded to nurses in the UK, and in 2016 she was awarded an OBE. She advises families, organisations and governments across the world. She is also author of Care Homes: The One-Stop Guide.

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ALSO BY JUNE ANDREWS

Care Homes: The One-Stop Guide
(Souvenir Press, 2020)

10 Helpful Hints for Carers
(with Allan House, University of Stirling, 2009)

When Someone You Know Has Dementia
(Greystone Books, 2016)

Dementia: What You Need to Know
(Profile Books, International Edition, 2016)

Demencja: Kompleksowy przewodnik po chorobie
(Harmonia Universalis, 2015)

REVISED AND UPDATED

THE ONE - STOP GUIDE

Practical advice for families, professionals and people living with dementia and Alzheimers disease

June Andrews

This revised edition published in 2020 by Souvenir Press

First published in Great Britain in 2015 by

Profile Books Ltd

29 Cloth Fair

London

EC1A 7JQ

www.profilebooks.co.uk

Copyright June Andrews, 2015, 2020

10 9 8 7 6 5 4 3 2 1

Typeset in Dante by MacGuru Ltd

Printed and bound in Great Britain by

CPI Group (UK) Ltd, Croydon, CR0 4YY

The moral right of the author has been asserted.

All rights reserved. Without limiting the rights under copyright reserved above, no part of this publication may be reproduced, stored or introduced into a retrieval system, or transmitted, in any form or by any means (electronic, mechanical, photocopying, recording or otherwise), without the prior written permission of both the copyright owner and the publisher of this book.

A CIP catalogue record for this book is available from the British Library.

ISBN 978 1 78816 505 1

eISBN 978 1 78283 694 0

Dedicated to my sister, Hazel McKay

Dear Reader

I knew nothing really of dementia before working on the film biography of Iris Murdoch. I was delighted to have played the part of Iris and learned a great deal about this condition from others working on the project who had direct experience of Alzheimers disease. Im very, very pleased that if the film did anything, it put this illness in the spotlight for perhaps the first time. In the years after I undertook this role, I watched the dementia work of the Iris Murdoch Centre, which was funded by the Dementia Services Development Trust at the University of Stirling, and I have become an ambassador for those who help people with Alzheimers disease, doing what I can to support them in raising awareness.

Dementia: The One-Stop Guide became an instant best-seller in the UK because it is so clear and practical, and I commend this second edition to you, which has been updated based on the feedback from people affected by dementia and their carers.

It was very daunting playing the role of a woman with dementia for a film, but no comparison to those who suffer with dementia or those who care for them. I hope this book will help families and friends of people with dementia, and be a support to those professionals who work to improve their difficult journey.

With love and good wishes,

Judi Dench

This is an update of a really useful book all about dementia and what happens when someone is affected by it. The word dementia is used to describe the collection of warning signs that show up when your brain stops working as well as it used to. It is defined as dementia only if these signs continue to get worse, with a permanent deterioration over time. If you know about dementia you will be better able to look after yourself or someone in your family who is affected by it.

Interest in dementia in the media has never been so great. Films have been made about famous people who had dementia. Iris, starring Dame Judi Dench, tells the true story of the English novelist Iris Murdoch from her brilliant youth to her last days in a care home. The Iron Lady is a moving film which explores Margaret Thatchers life through fragments of history that represent her disintegrating thinking and recollection clouded by dementia (and some rather impressive hallucinations). Movies also explore ethical issues of caring. Away from Her and The Savages describe the caring dilemmas of a husband in one case and children in the other. Still Alice is about the rare inherited form of dementia. Although there is still stigma, this public airing means that people are more open about dementia and allow themselves to think about it more than they did in the past. This is all good.

Public figures affected by dementia in their families are recruited as champions by dementia charities and encouraged to talk publicly about dementia and share their stories with other people. Often when I get into a taxi and the driver asks me what I do, I hear a personal story about how dementia has affected their family. Once upon a time it was a shameful secret.

Nevertheless, it is still almost impossible to get sensible advice about dementia. We are faced with waves of publicity on the subject as newspapers print misleading headlines implying that there will be miracle cures available almost immediately. Families affected by dementia live in fear of losing their entire lifes savings in care-home fees. Television adverts encourage us to be positive about dementia while at the same time celebrities and thought leaders say that theyd rather have cancer, or that they believe theyd have a duty to kill themselves if they had dementia. Investigative reporters make TV shows out of the misery of vulnerable people who have been on the receiving end of bad care. Scandalous nursing-home stories ruin our confidence that there might be a nursing home anywhere in which residents, even if they deteriorate, have the benefit of comfort and good cheer. The often-reported heartbreaking treatment of patients with dementia in hospital makes us afraid for ourselves and our older relatives.

In the middle of all this, thousands of people every year get the shocking news that someone in their family has dementia. For many of them their experience unfolds as if no one has ever travelled this path before. They are in uncharted territory, often surrounded by health and social care workers who dont know a huge amount about the condition. For many people it is hard to know where to turn for sensible advice.

How do I know this? In 2011, with Professor Allan House, a liaison psychiatrist, I wrote a book in plain language called