Table Of ContentCan I tell you about
‘‘This very helpful guide provides a shining light in the darkness and should be essential
reading to anyone who is dealing with a loved one with dementia.’’
– Dr. John-Paul Taylor, Senior Clinical Lecturer in Old Age Psychiatry,
Dementia?
Institute for Ageing and Health, Newcastle University
Meet Jack – an older man with dementia. Jack invites readers to learn about dementia A guide for family, friends and carers
from his perspective, helping them to understand the challenges faced by someone
with dementia and the changes it causes to memory, communication and behaviour.
Hello. My name
He gives advice on how to help someone with dementia stay as mentally and physically
active as possible, keep safe and continue to feel cared for and valued. This useful is Jack. I have
book will be an ideal introduction to dementia for anyone from child to adult. It will Dementia.
also guide family, friends and carers in understanding and explaining the condition
C
and will be an excellent starting point for family and classroom discussions. AN
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Jude Welton is a freelance writer. She originally trained as a child psychologist AB
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specialising in autism and is the author of the best-selling Can I tell you about Asperger T D
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Syndrome?Jane Telfordis an artist and illustrator and has exhibited paintings and E
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drawings internationally. IA? JU
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LT
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Jessica Kingsley Publishers
116 Pentonville Road
London N1 9JB, UK
400 Market Street, Suite 400
JUDE WELTON
Philadelphia, PA 19106, USA
www.jkp.com Illustrated by Jane Telford
Cover design: Black Dog Design
Can I tell you
about Dementia?
A guide for family, friends and carers
Jude Welton
Illustrated by Jane Telford
Jessica Kingsley Publishers
London and Philadelphia
First published in 2013
by Jessica Kingsley Publishers
116 Pentonville Road
London N1 9JB, UK
and
400 Market Street, Suite 400
Philadelphia, PA 19106, USA
www.jkp.com
Copyright © Jude Welton 2013
Illustrations copyright © Jane Telford 2013
All rights reserved. No part of this publication may be reproduced
in any material form (including photocopying or storing it in any
medium by electronic means and whether or not transiently or
incidentally to some other use of this publication) without the written
permission of the copyright owner except in accordance with the
provisions of the Copyright, Designs and Patents Act 1988 or under
the terms of a licence issued by the Copyright Licensing Agency Ltd,
Saffron House, 6–10 Kirby Street, London EC1N 8TS. Applications
for the copyright owner’s written permission to reproduce any
part of this publication should be addressed to the publisher.
Warning: The doing of an unauthorised act in relation
to a copyright work may result in both a civil claim
for damages and criminal prosecution.
Library of Congress Cataloging in Publication Data
Welton, Jude.
Can I tell you about dementia? : a guide for family,
friends and carers / Jude Welton ; illustrated by Jane
Telford.
pages cm.
ISBN 978-1-84905-297-9 (alk. paper) -- ISBN (invalid)
978-0-85700-634-9 (eISBN) 1. Dementia. 2.
Older people--Mental health. I. Title.
RC521.W436 2013
618.97’683--dc23
2012046404
British Library Cataloguing in Publication Data
A CIP catalogue record for this book is
available from the British Library
ISBN 978 1 84905 297 9
eISBN 978 0 85700 634 9
One in six people over the age of 80 develop
dementia – including both our fathers.
This book is dedicated to them – and to our
mothers, who have shared their journey.
Can I tell you about…?
The “Can I tell you about…?” series offers simple introductions to a
range of limiting conditions. Friendly characters invite readers to
learn about their experiences of living with a particular condition and
how they would like to be helped and supported. These books serve as
excellent starting points for family and classroom discussions.
other books in the “Can I tell you about…?” series
Can I tell you about Asperger Syndrome?
A guide for friends and family
Jude Welton
Foreword by Elizabeth Newson
Illustrated by Jane Telford
ISBN 978 1 84310 206 9
eISBN 978 1 84642 422 9
Can I tell you about Epilepsy?
A guide for friends, family and professionals
Kate Lambert
Illustrated by Scott Hellier
ISBN 978 1 84905 309 9
eISBN 978 0 85700 648 6
Can I tell you about Selective Mutism?
A guide for friends, family and professionals
Maggie Johnson and Alison Wintgens
Illustrated by Robyn Gallow
ISBN 978 1 84905 289 4
eISBN 978 0 85700 611 0
of related interest
Dementia – Support for Family and Friends
Dave Pulsford and Rachel Thompson
ISBN 978 1 84905 243 6
eISBN 978 0 85700 504 5
Part of the Support for Family and Friends series
Telling Tales About Dementia
Experiences of Caring
Edited by Lucy Whitman
Foreword by Joanna Trollope
ISBN 978 1 84310 941 9
eISBN 978 0 85700 017 0
Contents
Introduction 7
Introducing Jack, who has dementia 10
Losing my memory – backwards 12
Life without memories 14
Losing abilities 16
Losing words 18
Using words 20
Feelings and mood 22
Showing my feelings 24
Losing life skills 26
Restlessness, sleeplessness
and wandering 28
How to help: Talking to me 30
How to help: Share the caring 32
How to help: Interesting activities 34
How to help: Smile please! 36
Dementia-friendly environments 38
Dementia – facts and figures 41
Different types of dementia 43
Getting help: Recommended
organisations and websites 46
Introduction
In the early stage of dementia, some people may be
able to give insights into their experience. But once
the condition has advanced, it would not be possible
for someone with dementia to tell their story in the
way Jack does. Jack wouldn’t really be able to reflect
on his condition or analyse it or find the words to
describe what he was thinking or feeling. So with this
little book, I would ask you to “suspend disbelief”,
and listen to the words that someone with dementia
might tell you if they could.
Living with dementia is a challenge for those with
the condition, and for those who care for them. I hope
that Jack’s words will help to show how behaviours
that might seem puzzling and bizarre make sense
if we appreciate what it really means to lose your
memory, and lose your ability to think clearly, to
reason and to communicate. If we step into Jack’s
shoes, we can try to understand what life might be
like for someone with dementia. If we understand
what it might be like, we are much more able to help.
What can be done to help? Medication can
temporarily slow the progress of certain forms of
dementia. Being physically active and keeping the
brain engaged by doing things such as crossword
puzzles may have a positive effect. There are many
ways we can structure the environment to make life
easier. But it is the way we relate to and behave
towards the person with dementia which has by far
the biggest impact on their quality of life.
We need to respect the person as an individual,
ensuring that they continue to feel cared for and
7
Can I Tell You abouT DemenTIa?
valued. This will mean acknowledging a reality
that may not (initially at least) make sense to us.
People with dementia lose the ability to remember
new information, so they may make sense of what is
happening now by using the only memories they still
have – those of the distant past. You may think it is
silly for an elderly person to worry about his children
getting to school on time, and may think it is doing
him a favour to point this out to him. But in this sort
of situation, pointing out that he is “mistaken” can
be counterproductive: it serves to increase distress,
not reduce it.
Once we accept that what is true for them is true
for them, we can avoid fruitless arguments of the “Oh
yes it is/Oh no it isn’t” variety, and life can become
happier for the person with dementia and for their
carer.
Even if we know (in our fully functioning brains)
that what the person with dementia is thinking is
not “accurate”, it helps to go with their flow, and play
along as if we “know what they mean”. This can be
a difficult thing to accept or do, but it makes all the
difference to their well-being (and ours). I remember
watching my husband appearing to have an animated
conversation with his mother, who was in the late
stages of dementia with Lewy bodies (see p. 44). If
you listened to the words they spoke they made no
sense, but there was a real sense of a conversation
going on with nods, and nudges, and hand pats and
conspiratorial smiles. My husband had entered
into his Mum’s world, and they had connected: she
seemed to be enjoying a really good chat.
Learning how to listen and observe, finding
ways to reassure or distract, learning not to
contradict or confront but to steer the conversation
to topics that make the person relaxed and happy,
understanding and coping with unusual behaviour
8
