Can I tell you about Dementia A guide for family friends and carers

by Jude Welton

Author Jude Welton Isbn 9781849052979 File size 1 7MB Year 2013 Pages 48 Language English File format PDF Category Family and Friendship Meet Jack an older man with dementia Jack invites readers to learn about dementia from his perspective helping them to understand the challenges faced by someone with dementia and the changes it causes to memory communication and behaviour He also gives advice on how to help someone with dementia stay as mentally and physically active as possible keep

Publisher :

Author : Jude Welton

ISBN : 9781849052979

Year : 2013

Language: English

File Size : 1.7MB

Category : Family and Friendship



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

Introduction

caused by problems with reasoning or memory,
finding satisfying activities they can enjoy, keeping
them safe and “on track” (reminding them gently
what day it is if that are confused, for example)…
it all needs tolerance, creativity, stamina, a sense of
humour and heaps of patience! It can be emotionally
and physically exhausting. But it’s not all doom and
gloom: it is still possible to have fun and laughter.
If you are caring for someone with dementia, make
sure you also take care of yourself, by seeking help,
support and guidance, by sharing the caring, and by
taking breaks. Caring for someone with dementia
is not something you can do alone. Check out the
organisations on pp. 46–48, and don’t be afraid to
ask for help.
Everyone’s story will be unique. The way someone
experiences dementia will depend on various factors,
including the type of dementia they have, the type
of personality they have, and the quality of support
they receive. But I hope that Jack’s story will help
you understand what the experience of dementia is
like for someone you care for, so that you can make a
positive impact on their life.
Now, over to Jack…

9

Can I Tell You About Dementia?

“Losing my memory is at the heart of it
all. I can’t remember anything new, and
old memories are disappearing too.”

10

Introducing Jack, who has dementia

“I’ve had dementia for quite a few years. I’ve got

Alzheimer’s disease, the most common form of dementia.
There are other types of dementia,1 but they all damage
the brain so that it can’t work the way it used to.
It’s strange: I can sometimes still remember things
that happened long, long ago – but I can’t remember
what someone said or did two minutes ago. Nothing
sticks. And distant memories have begun to disappear
too. Now I can’t understand things I used to understand
easily. I find it hard to make decisions and to carry out
everyday tasks. I have problems with communicating too.
It’s not surprising that it affects my mood. The
world doesn’t make sense any more. I sometimes feel
frightened, confused, angry and frustrated if I can’t
remember what I was going to say, or I can’t understand
what’s happening or remember who people are.
I’ll tell you about the way dementia has affected
me over the last few years. Some of the problems, like
wandering, stopped after a while. Others, such as
memory loss, have got worse.
I’ll tell you about things that have helped me feel
good and have helped me connect with the ‘me’ I used
to be. Things like reminiscing about football, watching
old films and singing songs from the old days.
I’ve had a good, long life. I served in World War 2. I
used to run my own business. I took pride in looking after
my wife and family. Now I have to rely on other people
to look after me. But I’m still an individual, who needs
respect. I’m still Jack.



1 Other types of dementia are described on pp. 43–45.
11

Can I Tell You About Dementia?

“I used to cycle to the shop to collect
groceries for Mum and Dad. Past
things like this don’t always feel like
‘a memory’. They feel like now.”

12

Losing my memory – backwards

“The first sign that something was wrong was when I

had lapses in my memory. At first my wife and I thought
it was just a bit of forgetfulness – you expect that when
you’re 80 years old! But then I started to get confused.
I often couldn’t remember what day it was, I kept losing
things, got lost myself, and I couldn’t remember what
people said to me. It was scary. We went to see my
doctor. It turned out I had Alzheimer’s disease.
The way memory loss happens is slightly different
depending on the type of dementia you have, but with
Alzheimer’s it seems to start with the brain no longer
being able to take in and remember new information.
I’d forget things that had just happened, even though I
could clearly remember things I did as a boy.
As time has passed, I have forgotten more and more.
Gradually I am forgetting everything I have learned since
childhood. Because of the changes going on in my brain,
I will unlearn everything I’ve learned, mainly in reverse
order.2
You can think of it as happening a bit like this: imagine
writing today’s date on a blackboard, and then writing
every year counting backwards to the year I was born –
2012, 2011, 2010, 2009… all the way back to 1923. Now
imagine someone taking a blackboard rubber and wiping
out everything starting with 2012 and going back to 1923…
The last memories to remain are the earliest ones.



2 This “most recent to most distant” progression in memory loss explains
why some people in the late stage of dementia start using the
language they learned when they were a child, even if they moved
abroad later and learned a new language.
13

Can I Tell You About Dementia?

“Even making a cup of tea got beyond me.”

14

Life without memories

“Until you start losing your memory, you take it

for granted. But to live your life, and make sense of
things, you need your memory. Memory isn’t just about
remembering facts and figures. It’s what lets you
remember people’s names and faces, remember where
you live, remember how to get home – even remember
when to eat or how to get dressed. You even need your
memory to remember who you are.
Your memory is like the store of everything you’ve
ever done or learned throughout your life. And because
of my Alzheimer’s disease, that store is gradually being
emptied.
I live life moment by moment, without memory to bind
all the moments together and give them meaning. I’ve
lost sense of where I am in time, so I’m losing the future
as well as the past. Losing my memory stopped me from
being able to plan things, or look forward to things, or
keep track of things I’m doing.
If you can’t remember new things, you can’t
remember what’s just happened or what’s meant to
happen next. When we got a new TV, I could never learn
how to switch it on – however many times my son showed
me. I’d forget step 1 by the time he was on step 2.
It’s not just that I can’t learn new things. I’ve forgotten
how to do things I always used to do. I used to love
cooking, but eventually cooking was no longer possible. I
might put the pan on, and then forget about it. I switched
on the gas and forgot to light it. It was dangerous.



15

Can I Tell You About Dementia?

“I kept forgetting where I put things,
so I put them in a ‘safe’ place. Then I
couldn’t remember where I’d put them.”

16

Losing abilities

“It’s normal to become a bit more forgetful as you get

older. But with dementia the forgetfulness gets worse and
makes life really difficult. I used to have a great memory.
I had to: I ran my own business, and was responsible for
lots of people. But I kept forgetting where I’d put things.
At first I blamed my wife. I thought she was hiding things.
I suppose I couldn’t face the fact that it was me.
I knew something was really wrong one day when
I was in town shopping with my wife. We’d separated
and were meant to meet up at the car, but I couldn’t
remember where we’d parked – even though we’ve
parked in the same place for years. I’ve never managed
to learn how to use one of those mobile phones, so I
couldn’t phone her. I was completely lost. A stranger
helped me.
In my work I had to analyse new information and
make decisions very quickly, but I started to find that
really difficult. That made me very anxious, and I started
to lose interest in things.
Losing my memory means I can’t make decisions,
make judgements or think about consequences. To make
decisions and make judgements, you have to be able to
hold lots of information in your head at once and analyse
it. My brain can’t do that any more. For example, I can
no longer judge whether my behaviour is appropriate or
not. I might behave in a way you think is rude. I always
prided myself on having good manners. I would never
mean to be rude. Please understand that.



17

Can I Tell You About Dementia?

“Quite early on, I’d often forget what things
were called! That was really frustrating.”

18

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