Dancing With Dementia

Dancing with Dementia
of related interest
Hearing the Voice of People with Dementia

Opportunities and Obstacles
Malcolm Goldsmith
Preface by Mary Marshall
ISBN 1 85302 406 6
The Spiritual Dimension of Ageing

Elizabeth MacKinlay
ISBN 1 84310 008 8
A Guide to the Spiritual Dimension of Care for People

with Alzheimer’s Disease and Related Dementia
More than Body, Brain and Breath
Eileen Shamy
Forewords by Richard Sainsbury, Robert Baldwin and Albert Jewell
ISBN 1 84310 129 7
Perspectives on Rehabilitation and Dementia

Edited by Mary Marshall
ISBN 1 84310 286 2
Understanding Dementia
The Man with the Worried Eyes
Richard Cheston and Michael Bender
ISBN 1 85302 479 1
Dancing with Dementia
My Story of Living Positively with Dementia
Christine Bryden
Jessica Kingsley Publishers

London and Philadelphia
Cover photograph by Danny O’Neill
First published in 2005

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 © Christine Bryden 2005
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, 90 Tottenham
Court Road, London, England W1T 4LP. 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.
The right of Christine Bryden to be identified as author of this work has been asserted by her in
accordance with the Copyright, Designs and Patents Act 1988.
Reprinted twice in 2005
Library of Congress Cataloging in Publication Data

Bryden, Christine, 1949-
Dancing with dementia : my story of living positively with dementia / Christine Bryden.
p. cm.
Includes bibliographical references.
ISBN 1-84310-332-X (pbk.)
1. Bryden, Christine, 1949---Mental health. 2. Dementia--Patients--Biography. 3. Alzhei-
mer's disease--Patients--Biography. I. Title.
RC523.3.B79 2005
362.196'831'0092--dc22
2004021146
British Library Cataloguing in Publication Data

A CIP catalogue record for this book is available from the British Library
ISBN-13: 978 1 84310 332 5

ISBN-10: 1 84310 332 X
ISBN pdf eBook: 1 84642 095 4
Printed and Bound in Great Britain by

Athenaeum Press, Gateshead, Tyne and Wear
To my husband Paul, who is God’s precious gift to me,
walking alongside me in faith and hope for our future.
To my daughters Ianthe, Rhiannon and Micheline, who
continue to be my best friends as we travel this
roller-coaster of life together. To Rachel, Ianthe’s
partner, for her unfailing love and support to us as a
family from the day that we all began this dance.
Christine
Contents
PREFACE 9
1 A ‘Roller-coaster’ Journey Since Early 1998 15

I’m really getting better!!!! 15
A new lease of life! 23
2 ‘Coming Out’ With Dementia 39
Challenging the stereotype 39
Taking the first step 51
Going global 57
Whatever next! 74
Round the world in 80 days 76
I wouldn’t recommend that you move… 85
3 Let’s Talk About Having Dementia 89
The medical journey 89
What it feels like to live with dementia 97
There are many ways to help 122
4 I Know Who I’ll Be When I Die 155
An identity crisis! 155
The fear of ceasing to be 157
Who am I becoming? 158
Dancing with dementia 163
Choosing to dance 166
AFTERWORD 173
APPENDIX 1: DO YOU BELIEVE IN MIRACLES? 175
APPENDIX 2: FREQUENTLY ASKED QUESTIONS 182
APPENDIX 3: WHERE TO GO FOR HELP 197
ENDNOTES 198
Preface
I was sitting, curled up in my favourite chair, with my cat purring

contentedly beside me. There was a knock at the door – it was a
parcel delivery. As I opened the package, I realised it was two copies of
1
my first book, Who will I be when I die?, which was published in 1998.
That book talked about my diagnosis with Alzheimer’s Disease, a type
of dementia, in 1995. At the time of diagnosis I was just 46 years old,
in a demanding job in the Prime Minister’s Department, and was a
single mother with three daughters aged 9 through to 19.
I thought, ‘Oh no! That will be the last two copies for me, before
they stop publishing the book.’ But it was a congratulatory letter from
the publisher, sending me two copies of the first reprint. I have had a
few more of these letters, and copies of more reprints. And now the
book has been translated into Japanese and Chinese, exported to the
USA, is to be published in Korea, and has been warmly received by
readers in many countries.
When I give talks about what it is like to have dementia and what
you can do to help us, people always come up to me and say how much
they have enjoyed my first book, how they have lent it to so many
other people who have been helped by it to understand more about a
loved one with dementia, whether this is Alzheimer’s Disease or any of
the other forms of dementia. And they always ask when am I going to
write another book, so that more people will be able to find out more
about what it is like to travel this journey with dementia, and what has
happened since the publication of my first book. People with
dementia also write to me and say how it had spoken to them,
expressed how they felt. My dear Canadian friend wrote ‘Thank you,
2
Christine, for giving words to my thoughts, my feelings, my life.’
You see, my life has done an amazing turnaround since 1998,
when I was expected to go into a nursing home by 2000 and maybe
9
10 DANCING WITH DEMENTIA
die by 2004. I have lived another few twists and turns of the
roller-coaster of life since then, and have been involved locally, nation-
ally and internationally in the Alzheimer’s movement. It is now 2004,
and I am still here, and it has been quite a journey of understanding, of
seeing more clearly who I am now, who I am becoming, and who I will
be when I die.
So what was it that finally tipped the scales in favour of my getting
back to my computer to write? It was when Yuji Kawamura, a producer
from NHK, the Japanese TV broadcaster in Japan, wrote to me and
asked if he could do a TV Special. The letter said:
A few days ago I read [the] book again and am impressed that
you not only coped with the fear of dementia but also found a
deeper, or newer ‘self ’ out of your experience. I also read the
draft copy of your lecture and realized that your process of
trying to know yourself even deepened since you wrote the
book. If we could show people how you are living a more
profound, fulfilling life than before, I believe society would
3
change, as well as the care of dementia itself.
In my first book I had written about how I got steadily worse, but then
seemed to be getting just a little better, over the three years after that
devastating diagnosis. I spoke about my spiritual, emotional and
physical journey with dementia. And although I felt a lot better
towards the end of writing the book, I had no other choice but to turn
to my faith. Medically the prospects were hopeless – steady decline
into increasing dementia as more and more of my brain shrivelled up
and died. My book title – Who will I be when I die? – reflected the fear of
losing self, of a future without knowledge of identity.
But in my talks now, I reflect on a journey of living positively with
dementia, and of discovering a journey into the centre of self. I speak
to professional care-givers, families, medical professionals, and others,
telling them what we feel like, what we need, and trying to give hope
and understanding in the face of this mystery illness that robs us of
who we think we are. Whilst advocating urgently for a cure, we need to
improve understanding and treatment of those living with dementia.
PREFACE 11
It has been a long and interesting struggle of advocacy for people

with dementia, first to my local, then to national Alzheimer’s Associa-
tions, from 1998 to 2001. Then I made contact with the international
Alzheimer’s movement, and an important part of this journey was
meeting Noriko Ishibashi in Christchurch in 2001. Somehow we
managed to connect at the level of emotion and spirit, across language
and culture. She has become a dear friend, and has achieved the publi-
cation of my book in Japanese, and has been a great source of encour-
agement in writing this second book.
By 2003 I had been elected to the Board of Alzheimer’s Disease
International to represent people with dementia. It is now mid 2004,
and I am still struggling and surviving, and doing all I can to change
the perceptions we have of dementia. But why have I tried so hard?
Why have I been so public about my disease? I don’t like all the atten-
tion, but the reason I have done all of this is because I hope that one
day we will treat these physical diseases of the brain like any other
disease of our body.
One day I hope that we will treat people with dementia with
respect, recognise just how hard they are trying to cope with getting
through each day, and provide them with appropriate emotional
support, social networks and encouragement. One day I hope there
will be a cure. There are 24 million people around the world who are
living with dementia, who are worthy of respect and should be
regarded as an international treasure.
Each person with dementia is travelling a journey deep into the
core of their spirit, away from the complex cognitive outer layer that
once defined them, through the jumble and tangle of emotions created
through their life experiences, into the centre of their being, into what
truly gives them meaning in life. Many of us seek earnestly for this
sense of the present time, the sense of ‘now’, of how to live each
moment and treasure it as if it were the only experience to look at and
to wonder at. But this is the experience of dementia, life in the present
without a past or future.
Looking back, it has been an amazing journey of self-discovery,
change and growth. Working with other friends with dementia
around the world, and their supporters, I see changes in the way
dementia is viewed, and I hope for a better understanding. By writing
this book, as well as my first book, and giving many talks, I have done
all that I can to help change attitudes.
But this book has been an enormous struggle to write. It has taken
six years, of collecting together various talks that I have given, papers
that I have written, and emails that were exchanged between me and
my friends with dementia. Even then, it made no sense until I talked
about my ideas with others, particularly with Yuji Kawamura and Liz
MacKinlay. My husband, Paul, has been my faithful co-worker,
encouraging me on those many occasions when it all felt too much,
and helping me to remember all the many events over the years, giving
me clues, ideas, prompts and recollections. We have shared many
laughs at my confusions and funny expressions.
IT IS TIME to rest, and I can add little to those words of Ronald Reagan,
when he said ‘I plan to enjoy the great outdoors and stay in touch with
my friends and supporters… I now begin the journey that will lead me
into the sunset of my life.’4
I plan to treasure each moment that remains with my family and
my friends, hoping that I remain well enough long enough to benefit
from any cure that might be discovered. But I know that in the first
part of this dance with dementia, I did what I could with the energy I
had left to reach out to help others to gain a better understanding of
people with dementia and the care that we need in our journey.
For me, my Christian faith is very much part of why and how I try
to live positively each day with dementia. I hope that my belief, or
your different faith tradition or unbelief, does not cloud the real
message of hope in living each day to the full, treasuring each moment
as if it were your last.
There are so many people in my life to thank, more than I can
possibly name. All I can do is to say is that without the support of my
family, of the Alzheimer’s movement, and of my Christian friends, I
could not cope with this daily struggle. This book would not have
PREFACE 13
become a reality without the encouragement and enthusiasm of

Noriko Ishibashi, Yasuji Ishikura, Yuji Kawamura, Eiji Tajima and
Yoko Higaki. Revd Dr Liz MacKinlay, my friend and my spiritual
advisor, has helped me with reading and editing, reflecting on what I
am trying to say, and she is my very dear friend and sister-in-Christ.
I am so grateful to my friends, who also are living with dementia,
in the Dementia Advocacy and Support Network International.
Without their support and encouragement, and sharing, I would feel
very alone. In particular, I want to acknowledge the inspiration and
insight that Morris Friedell has given me directly and to all of us in this
network. He has been able to express our aspirations, our fears and our
search for identity in our struggle with dementia.
My neurologist has walked with me every step of the way, carefully
assessing me each year, being realistic yet positive, and giving me
hope. I am indebted to him for empowering me to live life to the full
despite my diagnosis with dementia.
But most of all I thank Paul, Ianthe, Rhiannon, Micheline and
Rachel, who are my best friends as we walk this roller-coaster of life
together. We are adjusting our dance steps to the changing melody of
dementia, listening to the music within, as well as being encouraged
by the supportive music around us.
1
A ‘Roller-coaster’ Journey
Since Early 1998
I’m really getting better!!!!
M y eldest daughter, Ianthe, and I were sitting in the quiet,

window-less waiting room in Sydney, for me to be seen by the
neurologist for my yearly check up, to see how I was going with my
Alzheimer’s Disease, how the medications were affecting me, and
whether there were any functional or mood changes that I had noticed
in myself.
It was cool inside and there was very little noise, apart from the
clack, clack, clack of the receptionists’ keypads, and the rustling of
magazine pages being idly turned. It was May 1998, and outside
Sydney bustled busily in the sunshine of a warm autumn day.
I tried to focus on the article in the nature magazine before me, but
inside I was bubbling over with excitement. I wanted to rush in and
shout ‘I’m better!’ – but Ianthe, bless her soul, had been able to restrain
me and suggest that perhaps if I did this the neurologist would defi-
nitely think I had ‘lost it’ and was declining further into my dementia.
15
We had talked about this in the car during the long three-hour
drive on the highway from Canberra to Sydney, and she suggested that
maybe I should try to stay calm and simply say, ‘I think I’m beginning
to feel a lot better at the moment’.
Calm?! I felt far from calm. This was hugely exciting, this was the
most amazing thing that had ever happened in my life. This was some-
thing unheard of – in all of my reading about Alzheimer’s I had never
ever seen anything about people doing anything other than declining.
Sure, they might stabilise for a while, especially on the new
anti-dementia drugs. But feel better? No, that never happened.
1995–1998
At first, after my diagnosis in May 1995, for a year or so I really did
feel as though nothing was really wrong, and maybe it was all a
mistake. But I enjoyed the time off work to be with my daughters and
to rest with fewer weekly migraines. And in October 1995, the neurol-
ogist started me on Tacrine (Cognex), which was the first break-
through drug for mild to moderate dementia, just on the Australian
market. It was an anti-cholinesterase inhibitor.
These types of drug stop the breakdown of acetyl choline in the
brain. So, what’s so special about acetyl choline? Well, it’s a chemical
messenger in the brain making the neurones spark better and speak to
each other more clearly. Basically you get better reception inside your
head if you have more acetyl choline inside there. With diseases like
Alzheimer’s and other dementias, acetyl choline tends to be in short
supply, so your brain gets very slow and ‘foggy-feeling’ inside. By
taking one of these anti-cholinesterase inhibitors, you get to increase
the level of chemical messenger, and so help what remains to function
better. It’s a bit like a staircase on the sinking ocean liner, the Titanic,
taking me to a higher deck, so my feet won’t get wet as soon! Not a
cure, but what’s called a symptomatic treatment.
But even with more of this stuff sloshing around inside my brain,
by mid to late 1996, I began to notice real changes, difficulties in func-
tioning, in remembering, in speaking, in all sorts of things. Before I
A ‘ROLLER-COASTER’ JOURNEY SINCE EARLY 1998 17
thought it was only a little problem, which could be excused due to

stress. And even when faced with the awful picture of damage on the
scans, I explained it all away by saying to myself that maybe I had
always had this physical brain damage that showed on the scans, but
had managed very well with what I had. I felt a bit of a fraud, to tell you
the truth!
But by early 1997, there was no question that something was seri-
ously wrong with me, and no amount of extra chemical messenger was
going to really mask this. I had really deteriorated, changing as a
person, losing the super-fast, super-smart me. I had become much
slower in my speech, less able to make decisions, and more readily
confused. As I slowed down further, it was as if the world was too fast
for me. So much so that by mid 1997, I could not have given any talks,
and I struggled to finish my first book. I was well into my journey with
the disease, experiencing most of the cognitive, behavioural and neu-
rological signs of mild to moderate dementia. I no longer drove,
answered the phone or watched TV, but retreated into gardening and
books, as well as very early bedtimes.
I was sinking into depression, believing the medical model of
inexorable decline with dementia. And depression leads to
pseudo-dementia, where you show more symptoms of dementia than
might be expected from your brain damage. I was on a downward
spiral of hopelessness and despair, as a result of which I was withdraw-
ing into dysfunction. Alongside this depression were some very real
symptoms of the dementia.
I began to experience hallucinations, which I found very scary, and
finally asked three people at my church to pray for these to stop. I
5
wrote briefly about this in my first book. It’s since writing that book
that I have been told what really happened. Because I had closed my
eyes dutifully while these three friends were praying, I had no idea that
a whole bunch of my congregation had crowded round me – a bit like
a rugby scrum – and prayed for me. And of course these wonderful
people had no idea I had set limitations on what to pray for – simply
that the hallucinations would stop – so they all prayed fervently for my
complete healing. Apparently, so I learned a year or so later, there was
even someone visiting that day from the UK, who in the past had been
gifted in praying for healing. What a coincidence – or should I say
‘God-incidence’?
The hallucinations stopped that day, and I have only had a few
minor reminders of what they were like since – usually in the late
evening, just as I lie down to sleep, and it seems to be if I am very tired
or have started new tablets. I was happy enough to be free of hallucina-
tions, but then over the next month or so, my head began to clear of the
fuzzy ‘cotton-wool’ type of feeling that it felt like before. I could con-
centrate better, and found it easier to speak and listen. Was this the
depression lifting, or was it more than that?
I hadn’t expected any more from the prayer than stopping the hal-
lucinations, so it took me a while to realise that I was actually feeling
better – definitely not something that was meant to be happening to
me, nor what I had expected at all.
I began to speak on the phone again, and even to start driving
again, despite the reservations of my eldest daughter, who was natu-
6
rally quite alarmed at the thought of me in charge of a vehicle. I speak
of these improvements in my book, which was finished in February
1998.
But what I didn’t write about was that no one believed me when I
said I was feeling better, and no longer declining as fast. It was hard
enough for my three girls to adjust to the idea – and there was no
proof, really. Well, not concrete proof anyway. I just seemed to be more
of ‘my old self ’ again. Maybe less depressed?
And given that it was my church friends who had prayed for me to
get better, you’d think they would have been the first to believe me, but
they weren’t. Somehow, everyone still treated me with ‘kid gloves’,
assuming I couldn’t do things, so not asking me to.
But looking back now, in early 1998 was when my exciting
‘roller-coaster’ journey really started, when all sorts of things began to
happen which I could never have dreamed were possible.
The neurologist’s re-assessment in 1998

But let’s go back to the neurologist’s office, in May 1998, and the
beginning of my quest to prove that I really was feeling better, and
battling to survive the decline of dementia by making sure I had a
positive attitude. I wanted to hold onto my belief in overcoming the
medical model, in allowing the unexpected to invade my life, and to
allow my faith to carry me through this struggle to survive.
‘Christine?’ said the neurologist as he came out of his office,
picking up my manila folder from the receptionist’s desk, looking
toward Ianthe and me with a welcoming smile. I stood up, barely able
to contain my excitement, walked in, and said, before I even sat down,
‘I’m really getting better,’ in quite a firm voice, grinning widely. It was
hardly something to look down in the mouth about or whisper!
‘Well, that’s good to hear. It seems as if you are really fighting this
disease at the moment. Make the most of this temporary honeymoon,’
he responded.
The neurologist’s words weren’t at all what I wanted to hear!
Couldn’t he hear what I was saying. Didn’t he believe me? This was no
mere stabilisation. This was no temporary honeymoon! I was feeling
better each day. So I launched into a description of what had been hap-
pening to me over the last year.
What exactly had been happening? It had been a year of surprises,
of trying to adjust to feeling better, and of then taking up this chal-
lenge to move on and make the most of the rest of my life. The words
that best expressed how I felt were those said to the crippled man by
Jesus, as he healed him: ‘Take up your mat and walk’. That is what I felt
I had done, take up my mat to start walking this journey of life in faith,
to believe I was really able to do more than I had done before.
I thought back to my previous appointment the last August. ‘No, I
really am getting better. I drive locally again, I feel less confused and I
finished the book and sent it to the publishers in January. I felt so much
better, so much clearer in the head, that in February – just a few
months ago – I enrolled to do a degree in Theology.’ This is where
Ianthe chipped in: ‘Mum even got a High Distinction on one of her
assignments!’
After talking with me for a little while longer, the neurologist

asked me to sit up on his examination couch, and he got out his little
hammer so he could check my reflexes. He also scraped my hand with
something sharp, whilst peering intently at my face. What on earth did
my face have to do with my hand? Ianthe asked what all these tests
were. He replied, ‘Your Mum had reverted to some primitive reflexes,
which we see in newborn babies, and which are typical of the type of
brain damage we see on her scans. This one (when he scraped the hand
and looked at my face) is the pout palmar reflex, this one (when he
scraped the inside of my hand and looked at my fingers curling up) the
grasp one.’
‘Hmm.’ Then he peered into my eyes with a bright light. ‘You do
seem to be a bit better. Some of these reflexes are not as strong as they
were. Would you mind if we did some more tests?’ Would I mind? Of
course not, I felt better and was sure that any test would prove it!
So off I went for all the tests again: more scans to check on how the
brain damage was progressing, and more psychometric tests to test
how my brain – my mind – was functioning.
The scans I had straight away, walking around St Vincent’s Spe-
cialist Centre, finding all the relevant departments with Ianthe’s help.
The first was the computer-assisted tomography or CT scan, which
would show how much of my brain was damaged. The second was the
radio nuclide brain perfusion study, which looked at how what
remained of my brain was actually functioning.
For this perfusion study, I was asked to lie quietly in a darkened
room, with cotton wool in my ears for half an hour, then I was told a
technician would come in and insert a needle in my arm, and that I was
not to look at or speak to this person, as they wanted my brain to be
‘resting’. Then someone would come in and take me to be scanned. It
was a shock to be taken out into the corridor, after all this quiet rest,
through into the noisy clatter of the brightly lit scanning room. I lay
down onto a table, with a wheel-like scanner slowly clacking its way
around my head making its own picture of what it saw inside.
Both the CT and the radio nuclide perfusion scans showed much
the same picture – lots of damage, much more than you’d expect for a
healthy 49-year-old. And this damage was in the middle, and around
the front and sides of the brain. What did all this mean?
The neurologist had arranged for me to have psychometric tests in
Canberra, after we got back. These tests involve sitting quietly with a
clinical psychologist for two to four hours of questions and ‘games’. I
managed to see the same lady I had seen for my first diagnosis, and she
welcomed me with a warm smile. Dark, short, neat hair, pleated skirt
and simple blouse, she had a soft, kind voice. I felt very comfortable,
not rushed or stressed, nor put under any sort of pressure.
But then the testing started. The psychologist slowly said numbers,
long strings of them, and then asked me to repeat them backwards and
forwards. How on earth was I supposed to remember these? Somehow
only the last number or two she had said were ringing somewhere
inside my head, obliterating any pictures or memories of a series of
numbers. I repeated as quickly as I could those few numbers that were
echoing loudly in my head, then made a guess as to what might have
come next.
Then she told me little stories, asking me questions about them. At
first she did this immediately, but then she asked me more questions
about these stories after I had done other tests, and of course by then I
had forgotten the details of where it had all happened, who had done
what, and why and when it was!
She carefully spoke aloud a shopping list, but it was very odd, not
like any you might write to go to the supermarket. It had furniture,
vegetables, meat, clothes, all sorts of things mixed up together. It was
impossible to hang onto the names of enough of the items as she spoke
them all out, long enough to try to sort them into any category. All I
could do was lamely try to recall as many of the objects as possible.
There simply was not enough space inside my brain to do any sorting
into types of objects, so that it would be easier to recall them later.
To sort, not only did I have to remember the objects, then label
them as a category, but then I had to sort them into each category. It did
not end there, because then I had to recall each category, and identify
and list what I had remembered in each category. You see, that all takes
a huge amount of space up, and I was running out of space inside my
head rapidly! As she spoke, I could almost feel bits of the list falling out
again, so it was impossible to hold onto enough items to sort and
recall.
I remember, too, being given puzzle shapes to put together in a
pattern. ‘Just take your time,’ she said. But no amount of time would
help me make sense of the shapes. They simply did not seem to make a
pattern. ‘It’s OK,’ she said, ‘you still have more time.’ But time was not
what I needed, I needed something or someone to show me what this
all meant. To me, these shapes and these story pictures had no connec-
tion to each other that I could see.
For most of these tests she used a stop-watch to record my time. I
knew I was slow, so felt further demoralised in that it was being
recorded for everyone – or at least her and my doctor – to see. ‘Tick,
tick, tick,’ her watch loudly proclaimed, and my brain seemed even
slower than the second hand on the stop watch, as I tried to make sense
of all the puzzles laid out before me, the stories told to me, the lists of
numbers to recall, the items to remember.
Thankfully, she decided not to do the maze test with me again,
deciding there was little to be gained by showing that my skills (or
lack of them) might have further declined from a previously recorded
pretty low level. This was back in 1995. I had sat for what seemed a
very long time, in front of a grey inanimate maze, and the psychologist
asked me to use an electric rod to trace a path from the top to the
bottom. This worked fine for what seemed like just a millisecond, until
I made a wrong turn. An electronic buzzer sounded, loudly and insis-
tently, feeling as if it had decimated what was left of my brain.
Carefully I traced the rod through another turn in the maze, but
somehow my eyes could not ‘see’ a path through. There was the
beginning, I could see that, and down there somewhere out of my
vision was the end. But there was just a muddle of blockages, turns and
twists in-between. The buzzer sounded many times, as I desperately
sought to make my way from one end of the maze to the other. My
score was pitifully low, a mere eighth percentile, and just confirmed
what I knew – that I had great difficulty finding my way along unfa-
miliar routes. It was a great relief not to have to repeat this awful expe-
rience again in 1998. After around four hours of testing, with
numbers, patterns and stories, somehow she managed to gather all this
together to make sense of what was wrong with me.
Her reports were sent to my neurologist, as part of his reassess-
ment. She reported further mild decline, and indications of functional
problems in the frontal and temporal areas. The neurologist decided to
follow up with another scan, in July 1998, one that might be able to
distinguish between the functional patterns of the various types of
dementia, a positron emission tomography or PET scan. I knew what I
was in for – I had already had a PET scan in 1995, and described this
7
ordeal in my book. You lie there with a mask on your face, your whole
body laid out on a metal trolley and wheeled into this small tube. You
have needles in each arm – one to put stuff in, the other to take stuff
out. You have a blindfold on and ear plugs in, so that you are isolated
from the world around you, and very quietly people glide in and out to
take samples, or whatever, from the needles in your arms. It seems like
hours that you are trapped like this, but in reality it’s about 45 minutes.
The PET scanner was in Sydney, so I would need to travel back
again from Canberra. It uses radioactive isotopes which have a very
short half life, so need to be rushed across the road from the cyclotron
to be injected into you, as you lie in a tunnel with a scanner noisily
clunking around you, in the Royal Prince Alfred Hospital. Not some-
thing for the claustrophobic, I can assure you!
Finally I got the call to come to Sydney for the PET scan. But I will
get ahead of myself if I tell you who took me to the bus station in
Canberra that blustery July morning. Winter had set in, with early
morning frosts and fogs over Canberra. But spring was on the horizon
in more ways than I could imagine.
A new lease of life!

The sand felt warm and finely grained between my toes and I squinted
against the harsh sun in the glaringly blue sky. Shading my eyes with
my hand, I could just make out the dive boat out on the coral reef. One
of those little stick figures just visible in the glare was my youngest
daughter Micheline, snorkelling with a friend. This was my dream
holiday, we had flown up to Gladstone, taken a helicopter out to
Heron Island, and now we were relishing four days of sunshine,
wildlife, and relaxation. This was a wonderful 1997 Christmas gift
from my Grandma as she approached her 103rd birthday!
Micheline had made a friend, and been out with her and her family
each day. I had done most of the walks around the Island, and enjoyed
watching the turtles, birds and other coral reef sights immensely. But I
felt very lonely – very excluded from the family groups around me and
the young couples enjoying each other. For the first time in my life I
began to feel the pains of loneliness. It was a real physical feeling of
anguish and despair. I had always been so self sufficient, busy, focused
and organised, pouring my energies into my girls and their lives, as
well as my work. Now I felt empty, half of a person somehow. But I put
it all behind me as we travelled back home.
‘Anyway,’ I kept telling myself, ‘it is silly to focus on my loneliness,
as there is little I can do about it. After all, I’ve been diagnosed with a
terminal illness, and the medical prognosis is at best for up to ten years
of living at home with increasing levels of help, before needing to go
into nursing home care.’
‘But surely if I am feeling better supposedly because of prayers for
my healing, shouldn’t I really believe I am better and behave accord-
ingly?’ I carried on this conversation with myself over the days and
weeks ahead.
‘Well, maybe,’ I lukewarmly agreed, ‘and perhaps I should go out
and socialise a bit more. But at the age of 49, where am I going to meet
people?’
Church was the same group of friends, comfortable and secure. I
was not meeting many new people, in a new environment. Maybe I
needed to step out and challenge myself a bit more. But then, wasn’t
this being silly? Who gets better with dementia? Who tries new things
when they have this disease? Who’d want to make friends with me?
It was my friend Liz MacKinlay, the priest and gerontological

nursing lecturer who had persuaded me to write my first book, who
encouraged me to consider going to study at St Mark’s Theological
College. I mused at the possibilities here – I would meet people for
sure, and it would be a supportive and positive environment. I felt
really challenged now. How could I sign up for a degree, nine years
part time, when I was declining every day with dementia?
Alzheimer’s is meant to take away your ability to learn new things,
like getting to new places, meeting new people, doing new things.
And here I was thinking about a degree!!!! The conversation in my
head began again! ‘But didn’t I really believe I was getting better?’
Embarking on studies
One day in early February 1998, just a year after my surprising Heron
Island experience of loneliness, I had dropped my daughter off at
school, and was driving along a road in Canberra, one that leads across
a bridge over the still grey waters of the lake. Just before the bridge, I
realised that St Mark’s College was just over the road.
It was a beautiful sunny day, I was in no hurry, and thought that
maybe I would just pop in and find out about their courses. The lady at
the desk gave me the information and then asked if I’d like to meet the
registrar to find out more. ‘OK,’ I said, ‘I’d like to know a bit more
about how many units you have to do and in what areas, and how long
it takes.’ The registrar ushered me into her small, chaotic and paper-
strewn office. I sat on the only chair that was not covered with papers.
She was enthusiastic, warm and welcoming. ‘Courses are starting
next week. Why don’t you simply sign up now? I can get you in right
away if you want. Here, take this form with you and you can drop it off
later on today if you want to go ahead.’ Looking at the form at home, I
laughed out loud at the section that said ‘Do you have any disabilities
that might interfere with your studies?’ Carefully I wrote in ‘Alzhei-
mer’s Disease’, thinking how ridiculous this would seem to the univer-
sity administration. Maybe they would treat it as a student prank?
But I was worried. How would I cope trying to listen to lectures,

absorbing new information, meeting new people, and doing essays on
topics about which I knew nothing as yet? It was a great relief when
each of the lecturers I met was kind, and asked what they could do to
help me. They knew about my diagnosis, and about how I was trying
to live positively each day, and to overcome my feelings of despair.
It was clear to them and to me that I could not hang onto new
information for very long, but that I could interact with ideas, work on
reading and taking notes, and try to prepare essays with lots of time.
Many days I was simply not able to study – my brain was not focused,
my head hurt, and my eyes somehow would not work properly. I
needed clear lecture notes, time to read and absorb, and it was soon
easy to see that I would cope better working in the distance education
mode, with frequent visits to the College when I felt well enough to do
so.
Meeting all these new people was wonderful, and I felt as if I was
beginning to crawl out of my shell. It was stimulating to have new
ideas, facts and issues being debated around me, to have challenges
such as trying to write an essay, and to manage to get my increasingly
limited brain space to absorb and process concepts that were totally
new to me. I enjoyed the quiet of St Mark’s library, with its smell of old
paper, and its closely spaced high shelves full of tightly packed and
catalogued books, which had been opened long ago by other students
seeking information. I bought a new computer, and learnt how to use
all its various functions. Searching the Internet became a passion, as
did reading and discovering so much new information.
My studies went very well, and when my first essay was returned to
me with a High Distinction I realised that the bits of my brain that
were left were obviously still working very well indeed! Maybe my
‘brain steroid’ – my anti-dementia drug – was giving me an added
advantage. It certainly was clearing the fog in my brain, and helping
me to function, slowly but capably.
But still I had this medical diagnosis and prognosis hanging over
me. I had been told the standard dementia script by the first neurolo-
gist I had seen: ‘You have about five years till you become demented,
then a few years after that in a nursing home till you die.’ It was so hard
to shake off this dismal prognosis, and to just take each day at a time, as
my current neurologist was encouraging me to do. How could I believe
in a rosy future, in completing the entire post-graduate diploma
course? I was doing this part time, and I was certain I could not last the
distance.
Going to the neurologist with Ianthe in May 1998 for the check
up, and for the follow-up scans and tests in July, was a ‘circuit breaker’
for me. Either I was really improving, or maybe I was staying on a
plateau without getting any worse, or feeling better was just a figment
of my imagination. The neurologist would be able to see whether the
prognosis was still as bad as it was the year before. This would really
help me to believe that I had a future, one in which the prospect of
actually gaining a new qualification was a possibility. I was happy to
do as many tests as he wanted.
While undergoing all the tests in Sydney, I began to think ‘What if
I will last a lot longer and not get so sick so soon?’ But this happy
prospect of good health brought with it feelings of sadness, as then as I
would have years and years alone to experience the pain of loneliness
that I had felt – an almost physical feeling – whilst on Heron Island.
Wishful thinking, or a vision of the future?

I used to sit in my living room, teary and lonely. ‘What a wimp!’ I
thought. ‘How come this is the first time in my life that I have ever
wanted a companion? What’s wrong with me?’ I think my girls sensed
that I was not quite as content as usual with my own company, and for
Mother’s Day in 1998 they gave me a teddy bear. Certainly an
improvement, but not quite the real thing!
That May/June, I was reading my daily bible study book.8 I was
astounded as before me was a series of meditations on loneliness. I
sobbed my way through each of these, often praying passionately, and
realising what fervent prayer really was. There I was, prone, weeping
with the tissue box beside me. Thank goodness no one was at home to
see me!
But then during one of these times of weeping and praying, I had
this strange picture in my head, almost like a video clip, maybe some
people might call it a vision. In this ‘waking dream’, I felt that I was in
the passenger seat of my own car, with a pile of papers on my lap, the
engine running and the driver’s door open. Somehow I got the feeling
that my life partner was going to get into the car, and that I had the
maps on my lap, with which to help him in his ministry and our life
together.
Well, I was sure this was just wishful thinking, of course. Maybe I
had fallen asleep and had a dream. Wouldn’t you? Anyway, I soon
forgot all about this silly bit of fanciful thinking, and got on with my
studies.
But the loneliness became stronger, the emptiness somehow more
overwhelming, so I reviewed my life. Where was I going to make new
friends, where was I going to meet people who might take me out for
dinner or to the movies? Not at church, everyone was too busy and too
protective of my health. Not at studies, everyone was focused on their
work, and their very busy lives.
Meeting Paul
I had been at St Mark’s College for a few months and things were
going well. Now Ianthe was driving me from Canberra to Sydney for
my check up with the neurologist. We chatted about this and that as
the tarmac road hurtled beneath, and the bush landscape rolled past.
Finally I managed to pluck up courage to really open up and share with
her my feelings of loneliness. Soon I was sobbing my way through
several tissues. I said how I was so shy and would find it very hard to
meet anyone, as I was too afraid even to ask someone to come for a cup
of coffee with me.
‘I can’t believe you, Mum. You always seem so sure of yourself. So
in control. Surely you could simply ask someone to have coffee with
you?’
‘I could if it were a woman, but I would be literally shaking if it
were a man,’ I confessed. I talked about the possibility of joining an
introductions agency, and wondered out loud if God could work

through such an agency to find the right person for me.
Finally I was very bold, surprising myself and all my friends.
Maybe it was really a sign of dementia to be this impulsive, to act this
much out-of-character. But I managed to pluck up the courage to sign
up to an introductions agency. In my prayers I made this deal with
God, that if it was his will for me to be alone for the rest of this new life
that I thought he had given me, then that was OK. However, if not,
could he please work through this agency to find me the person he had
chosen for me.
THE PHONE RANG loudly in the kitchen – it was the lady from the
agency. ‘We have a nice gentleman who we think you would like to
meet. His name is Paul and he has been a diplomat for the Australian
Government.’ She told me he liked sailing, music, motorbikes and
travelling. This sounded very intriguing. So I said ‘OK, he can give me
a ring on Friday evening.’ The agency suggested we arrange a meeting
somewhere in a public place for coffee or a walk.
I was so nervous on Friday evening, and when the phone rang, I
picked it up hoping my fear could not be heard, as I said ‘Hello, yes this
is Christine.’ We arranged to meet on the steps of the National Library
for a walk by the lake, at 12 noon on Saturday.
The next day I felt ill with apprehension! I dressed in my purple
trousers and silk jacket, woollen gloves and comfortable walking
shoes. My hands were sticky and it felt difficult to breathe easily. It was
a sunny but very chilly winter’s day, with the sky a deep clear blue, as I
drove into the Library car park wondering which car might be his.
I stood on the steps as this man about my age came towards me,
smiling. He had blond reddish hair, glasses hiding his watery blue eyes,
neatly trimmed beard, and a cord jacket and trousers. I was trying to
take it all in. What was he like? Would he like me? Lots of thoughts
filled my mind as he thrust a bunch of bright yellow daffodils into my
hands. ‘Hello,’ he said, ‘I’m Paul.’
I was overcome, not knowing whether to take off my gloves to

shake his hand, where to put the flowers. Fumbling around in shyness,
I thanked him for the flowers, stuffed my gloves in my pocket and
shook his hand! Self-consciously we walked off together towards the
still grey water of the lake, as I gripped tightly onto my bunch of
flowers. We decided to lay the flowers on the nearby memorial to a girl
who had recently been tragically killed in an accident there.
We started walking around the lake, talking about our lives, our
children, our family life, where we had worked, where we had lived.
Paul said he had a simple lunch in his backpack, and we decided to
stop at a picnic spot just around the lake. He produced a blue seer-
sucker table cloth from his backpack, laid it out on the picnic table and
proceeded to lay out a magnificent spread of crusty bread, cheese,
pickle, butter, plates, knives and even French wine and wine glasses! I
was overcome.
Paul was so nice, that I felt terrible about not letting him know
about my illness beforehand! I plucked up enough courage to tell him
the whole truth about me, about my illness, expecting this to be the last
time I would see this wonderful person. After all, who wants to date
someone dying of a disease like Alzheimer’s?
So sitting on the wooden bench in the chilly Canberra winter sun,
I sipped my red wine, and told him all about my diagnosis with Alz-
heimer’s Disease. I said that the doctors thought that I would need full
nursing care in about five years, and would probably die a few years
after that. Paul talked about his father dying of Alzheimer’s, and did
not seem at all put off by what I thought was bound to be the end of
our relationship, when it had hardly begun.
We continued walking around the lake until the light started to
dim, and the air became chilly and damp. Finally we decided to go
back to our cars, realising that we both had sore feet and hoarse
throats! As we dawdled at my car door, to say goodbye, I plucked up
enough courage to ask Paul if he would like to see a movie I had
wanted to see, but knew my girls did not want to go to. We arranged to
meet again the next day and saw the movie.
As we sipped our hot coffee at a nearby café after the movie, I told
Paul that I’d be away for a few days with my daughter, to visit my dear
friend Leanne. I had spoken in my book about meeting Leanne every
Friday evening for dinner, to commiserate and reflect on the past
9
week. She had now moved away to a farm south of Canberra, so the
next day, Micheline and I boarded the bus for the six-hour trip. We had
a wonderful time, sitting in front of a roaring log fire, walking in the
beautiful countryside, tasting delicious red wines, and of course
talking for hours, sharing all that had been happening in our lives. I
told her about meeting Paul, about how lovely he was, and yet how I
felt bewildered, bemused and perplexed, and wondered what to do.
When Micheline and I returned home, the answering machine was
blinking insistently. I pushed the button and heard several messages
from Paul, each one becoming more anxious as to when I might be
coming home. Soon I plucked up courage to ring him, and he sounded
delighted to hear my voice.
We saw each other a great deal those first few weeks, and of course
now I can tell you that it was Paul, in his modest red car, who dropped
me off at the bus station that cold day in early July to travel to Sydney
for my tests.
A few weeks later we travelled together to Sydney to visit his
family for his birthday. His mother greeted me warmly, and made me
feel very welcome. We went with her to meet Paul’s brother Ian and his
wife, at a delightful Japanese restaurant nearby. I was so nervous. What
would his brother think of me? But soon I felt right at home, as we
chatted away over sushi and tempura. As we said our goodbyes in front
of the restaurant, Ian gave me a big hug and said ‘Welcome to the
family.’ I was overwhelmed. That night, before going to bed, I gave
Paul his first big hug from me, and wished him a very happy birthday.
My emotions were in turmoil!
But over the next few weeks I realised there was a large part of my
life I could not really share wholeheartedly with Paul. I was a strong
Christian, with a supportive church family. I went regularly to church
and read my bible, and my faith had sustained me through so much.
Paul believed that God probably existed, and he went to church at

Christmas and at Easter. His faith journey was very different.
Finally I suggested that Paul go back to the agency – much to the
astonishment of my girls who knew how much I liked him! Ostensibly
I said it was because I was only his first introduction, and there must be
lots of lovely ladies waiting to meet him, so it did not seem fair to him
to only meet me, someone who had Alzheimer’s Disease. Paul and I
had often joked about the agency being the Old Dog’s Home, and that
we were like a couple of lost old dogs who were looking for a good
home. Back to the Old Dog’s Home Paul went! He got a list of names
from the agency, but never got to ring them!
Instead, my phone rang, insistently and loudly on the following
Monday morning. It was Paul. ‘I want to marry you, and take care of
you, as I think I have been told to look after you.’
I gulped, this was all too much to take in, we had only known each
other a few weeks! I said ‘Perhaps you could come over for lunch and
we could have a chat?’ I put the phone down, my mind reeling. Yes,
Paul was lovely, but this was so fast, so sudden, so unexpected. And just
who was it who had been speaking to him about taking care of me?
He came rushing in that lunchtime, a big grin on his face, eyes
shining, face beaming with delight. He started to tell me about the
previous evening, when he had been sitting in his bed, ready to go to
sleep. Suddenly the room was full of this vivid movie, perhaps like a
waking dream. He was amazed as he saw us riding together on a motor
bike, with a side car. We got off to look at the sunset, and a towering
shimmering being got out of the side car. This shimmering being then
calmly put me on the back of the bike, turned around and said to Paul,
in a quiet, firm yet gentle voice, ‘I will take care of her now’, and rode
off into the sunset with me.
Paul felt strongly that this vision, or whatever it was, meant that he
had been told to look after me until I died, when I would be taken
safely away. Medically that could be in a few years time. He became a
Christian, joined me at church each Sunday and came to my bible
study group, and began a rapid learning curve of living joyfully in faith
as part of the family of Christ. And the poet in him began to flow, to
burst out of him like a release of love and joy!
First Paul wrote this poem about how it did not matter if we only
had a few precious years together, before I declined and died with
dementia.
How long
How long do we have before our candle’s out?
Forty, ten years, five, one?
Six months, a week, a day – too short sure!
But I’d not complain. Better one day than none.
Then he wrote this next poem about how he would be there for me
until I died with dementia, and that when he in time died, we would be
together again.
When you lie down to sleep

When you lie down to sleep
I’ll hold your hand.
Soft breathe, calm heart, content.
When you lie down last to sleep
Soft breathe your last on the Valley floor
I’ll hold your hand
Not content until
My heart slow stops
Then content we’re one once more.
Soon the muse and the poet were spending a lot of time together. Paul
came round for breakfast, lunch and dinner, only going away to work
and sleep. It was as if he didn’t want to waste any time, a precious com-
modity for me. We packed a great deal of talking, of sharing, into just a
few months.
It was a time during which my daughters needed to adjust to this
new person, competing for this precious time with their mother who
was battling a terminal illness. It was not at all easy for them, especially
for Micheline who was living with me at the time. We had become very
close, just the two of us, after her sisters had left to go to university.
A few months after Paul and I had met, when Ianthe and Rhiannon
were home, we all sat around the dining table, after eating our Sunday
roast dinner. Paul stood up and gave a little speech to my girls, in which
he promised that the only hand he would ever raise to me would be
one to help. There were a few teary eyes around the table that day, as
the girls and I realised his sincerity and willingness to begin this
journey alongside us, the dance with dementia.
Vision becomes reality!

The phone rang, while Paul and I were busily preparing a meal
together one evening in September 1998. I picked it up and it was the
neurologist with the results of all those tests in May and in July.
‘I’ve looked at the scans, and compared them with those that were
taken three years ago now. I’ve also examined the psychometric
follow-up tests.’ He said, ‘The pattern does not seem to be typical of
Alzheimer’s, and is more like a fronto-temporal dementia. Also from
what I have seen in your functioning, and the differences in the various
scans taken now and back in 1995, it does appear as if the deteriora-
tion is glacially slow.’
I was speechless! I managed to squeak ‘Does this mean I might live
long enough to see my girls graduate, to see any grandchildren? Could
I last another 10 years or more?’
He quietly replied, ‘I don’t see why not, given the current rate of
decline, and your ability to keep functioning.’
We danced around my kitchen at this news! We would have more
time together that either of us had dreamed could be possible.
A FEW WEEKS later, I drove my little green car to Paul’s house, as we

planned to go together that evening to a sailing club meeting. We
agreed to go together in my car, and as I was tired, Paul would drive.
Paul sat in the car, started the engine, and studied the maps to work out
where the meeting was. But then he suddenly remembered that some
papers were still in his house, so he gave me the maps, leapt out of the
car, left the door open, and the engine running, and dashed off to his
house.
I had forgotten my strange vision up until that time – but it cer-
tainly came back vividly at that moment. There I was, in the passenger
seat of my car, engine running, driver’s door open, and a pile of papers
on my lap. I felt quite wobbly inside, with shivers down my spine. Ten-
tatively, I shared this with Paul as we drove to the meeting.
IN JULY 1999, I was sitting in my counselling class at St Mark’s, with my

colleagues, wondering why Paul wanted to meet me there for lunch
that day. Just an hour later, I walked back into my next class, with my
world changed forever, and I started to tell them why I looked so
radiant.
Paul had led me by the hand into the small, slate-floored chapel.
We had sat quietly on the low wooden bench, gazing out of the beauti-
ful glass window, with its frosted design of a cross. Beyond the glass
pane was a swathe of moist green grass, dappled with the shadows of a
large tree, where small birds chirped and flurried. In the distance was
the calm water of the lake.
Paul dropped to his knees, took out a small box, and said ‘Christine
Eva Boden, will you marry me?’ I was speechless and overcome. All I
could manage was a breathless ‘Yes’. I put on the ring, a large blue
topaz that his mother had bought many years ago in Brazil, when she
travelled there with his father to visit Paul. It was a very special gift to
us, carrying memories of his father, and representing his mother’s love
and acceptance.
What followed was a frenetic time of organising by my church
family, as we planned to get married just a month later. The love they
showed us was amazing. All the organising, the flowers, the invita-
tions, all the arrangements were taken care of, so a great weight of
worry and anxiety was lifted from me. All I had to do was organise my
dress.
Why the rush? Not only were we both conscious of our time
together being precious, but we had talked to my mum in England
about arrangements. She was unable to come, because of her health,
but she really wanted my brother-in-law, Ivor, to give me away on
behalf of my father, who had died the year before I met Paul. And my
sister and Ivor, who lived in Hong Kong, were able to come across to
Australia with their boys only if we were able to set a date sometime in
the last two weeks of August.
We managed to organise the wedding for 21 August 1999. It was a
warm sunny winter’s day, and the church was filled with family, friends
and relatives for the celebration. As I got out of the car with Ivor, and
arranged my gold dress, I tried to hold my creamy orchids steady
despite my shaking hands. I was so nervous! All morning I had busied
myself, getting fresh flowers in my hair, make-up on, and my dress.
Flowers had arrived from friends, so the house was filled with their
delicate scent. All too soon, Ivor was there with the white wedding car,
with its white ribbons.
At the door of the church, Ivor took my shaking hand, speaking to
me gently, and encouraging me. Then he led me slowly up the aisle,
through the lines of people standing, and there was Paul waiting for
me at the altar, grinning with his white silk jacket and gold cummer-
bund. Our minister guided us through a delightful celebration in
which we exchanged our vows, and shared our joy, our faith and our
hope with friends and family.
A very special moment in the wedding ceremony was when we
washed each other’s feet, using a thick new fluffy white towel, and a
basin of warm water. We wanted to demonstrate how we would be
caring for each other’s needs in love, like the description of Jesus
washing his friends’ feet. It was deeply touching for our friends and
family, knowing the journey that we were to make together, this
journey with dementia.
Our wedding
My friends said ‘We were all so overjoyed! Just four years ago we
thought we would lose you to Alzheimer’s Disease. Now you are still
here, and getting married to such a lovely man. What a miracle!’ Each
day since that crisp sunny August afternoon does seem like a true
miracle to me – not only am I better than I could have hoped for, but I
now have a loving husband who shares my strong faith. Even just a
few years ago, I could not have dreamed any of this was possible.
2
‘Coming Out’
With Dementia
Challenging the stereotype
I t took me three years before I could speak openly about my

diagnosis, overcoming the hopelessness and depression that
exacerbated my dementia and took me on a downward spiral of
dysfunction. Climbing back from this pit of despair had been a
struggle, one in which my faith had sustained me, as well as the prayers
of my friends.
It was all too easy to believe the stereotype of dementia, of the late
stages of the disease, of being unable to recognise anyone and of being
unable to speak. It was a constant battle to overcome the fear of these
later stages that were so prominently the picture everyone had of
dementia. No one seemed to talk about the long journey beforehand,
between diagnosis and the end stage – the journey of living with
dementia each day.
The publication of my book catapulted me reluctantly into the
public eye in mid 1998, as someone with dementia who could still
speak, and who was also prepared to talk openly about this disease and
39
what it felt like to be on the journey from diagnosis to death. It was the
first time anyone in Australia had ‘owned up’ to having dementia. I
had ‘come out’, disclosing my disease, rather like those with AIDS
must feel, brave enough to admit to a disease that people dread.
Dementia was a shameful disease, to be feared or denied, not one to be
acknowledged and battled with.
The myths and fears about dementia – the stereotype of someone
in the later stages of the diseases that cause dementia – give rise to
stigma which isolates us. You say we do not remember, so we cannot
understand. We do not know, so it is OK to distance yourself from us.
And you treat us with fear and dread. We cannot work, we cannot
drive, we cannot contribute to society. I am watched carefully for signs
of odd words or behaviour, my opinion is no longer sought, and I am
thought to lack insight, so it does not matter that I am excluded.
But if I do have insight, and can speak clearly or write about my
experiences, then I am said to lack credibility as a true representative of
people with dementia. Why is this so? Maybe it is because the stereo-
type, and the stigma, are based on the end stages of dementia. But
dementia is not just an end stage, it is a journey, from diagnosis to
death, and there are many steps along the way. My battle for credibility
in making this journey was at first a lonely one.
Finding help and support

In October 1995, I was still reeling from the shock of just having been
diagnosed with Alzheimer’s Disease. I picked up the phone tentatively
and managed to ring the number for the Alzheimer’s Association. ‘I’d
like some information about being diagnosed with Alzheimer’s
Disease, please.’
The voice on the other end of the phone said ‘Who is it that you are
caring for, your mother or father? Husband?’ I gulped, and said in a
very small voice ‘Actually, it’s me who has been diagnosed. Is there
anything you have for people with dementia?’ The response was that
there was really very little available that would be suitable, as most
material was directed towards the carer, who was supposedly at home
‘COMING OUT’ WITH DEMENTIA 41
looking after me, in my incapacity and my inability to communicate. I

put down the phone, feeling cast adrift. The nearest I had to a ‘carer’
was my eldest daughter, and she was only 19 years old, and over 300
km away at university in Sydney!
I felt as if I had been abandoned by the very organisation I thought
had been set up to help me. Surely if I had cancer and had rung up the
cancer society, they would not have suggested that only my family
could have help?
I STRUGGLED ON as best I could, wrote my book, and dealt with the

emotional, psychological pain of this new life I was facing, in which
Alzheimer’s Disease seemed to dominate. But by May 1998, I had dis-
patched my book to the publishers, was studying at St Mark’s, and was
beginning to feel well enough to try again, to approach the Alzhei-
mer’s Association to ask for help for people with dementia. I was so
concerned that by only helping carers, those of us living on our own
were being left without help, struggling with our emotions, the sense
of being alone, the only one with this terrible disease, and being too
ashamed to tell anyone about it.
So I plucked up courage to go and find the offices of the local Alz-
heimer’s Association. I had a false start, turning up at a dementia
library, finding very little there apart from a few books and a junior
office member. There was no way I was going to own up to the fact that
I was a person with dementia. But the people there, assuming I was a
carer of someone of course, gave me the address of the ACT Alzhei-
mer’s Association
A few days later, a beautiful sunny, warm May morning, I received
the galley proofs of my first book. They looked great! Maybe they
would act as a ‘prop’ for talking to someone at the Association, maybe
they would prove I was someone with dementia, give me the necessary
credentials somehow?
With my proofs in hand, I managed to find the offices of the ACT
Alzheimer’s Association, above a bank in a shopping centre in
Canberra. As I walked up the stairs, and pushed the door open, I felt
anxious and worried about what to say. Would they believe I was a
person with dementia? After all, I could speak, so maybe I was a carer.
But maybe the galley proofs would prove I had Alzheimer’s Disease?
All these thoughts were swirling around in my head, as the phones
rang insistently, and the photocopier clunked and clicked. A lovely
friendly lady, with red hair, vivid green dress, and a bright cheerful
personality, welcomed me. She said she was delighted to meet me, and
made me feel accepted as someone struggling with dementia, someone
who needed support.
She put the answering machine on, and sat me down in a comfy
chair with a cup of tea. I found out that her name was Michelle
McGrath, and that she had just started as the Executive Director, vol-
unteering her time to establish help for people with dementia and their
families.
I told Michelle about being diagnosed with Alzheimer’s Disease,
and about writing my book. I said, ‘People with dementia need help
too. Could you maybe identify a few other people who have been
diagnosed with dementia and who might want to meet together regu-
larly to chat over a cup of tea?’ Later I found out that this was a timely
approach, as the Association had been considering its services for
people with dementia, not just for carers.
The ‘friends group’, as we called it, was set up in June 1998, for
four of us ladies with dementia, and Michelle was always there
smiling, chatty, remembering how we liked our tea, and facilitating
our discussions. Her enthusiasm and openness made each one of us
feel valued and accepted for who we were, despite our illness. We went
out together for shopping, for coffee, and developed a close friend-
ship, sharing some important emotions of despair, depression, anger
and confusion.
I remember that one day, Nora (not her real name), who was always
immaculately dressed and had her nails manicured and painted, said, ‘I
had a big argument at the weekend with my husband who wouldn’t
move the boxes in front of the car because he said there were no boxes
there.’ We chatted about this for a while, and then I gently said, ‘Some
of us with dementia see things other people don’t see. I know that last
year I had some terrible times like that.’ She looked amazed, and said,
‘Do you mean the boxes I saw were not real?’ She pondered a bit more
and went on, ‘My poor husband, I really shouted at him about those
boxes. Maybe they weren’t really there at all.’
A few weeks later, she said she was frightened of what seemed to
look like tigers lurking in the back of her wardrobe. When I visited her,
I realised there was a mirror at the back of her walk-in wardrobe which
could reflect things and make them look very scary, especially without
the light on. We spoke to her husband about this, so that he could
make sure that maybe the mirror was covered up and the light always
on.
I went to visit Helen (again, not her real name) at home a few
months after our group had started. She stayed at home while her
husband went to work. Helen said she often felt lost, even in her own
home. It was not really a matter of losing her way, but losing herself
somehow, she said. She knew the house was there all around her and
she could look down and see her body there, but somehow in her
head, there was no sense of being a person existing in this space. Helen
said it was worse when she was by herself, but when her husband, care
worker or friends were there relating to her, she seemed to come back
from somewhere where she had been lost. Maybe they acted like a
mirror for her, reflecting her existence, reaffirming her personhood.
During the next six months, I continued to go to my friends group,
as my new life was unfolding with Paul. I shared with them my hopes
and fears for the future. Soon Paul became interested in helping with
the Alzheimer’s Association. By the beginning of 1999, he was able to
have two days free each week, and so offered to help the Association to
set up another group as well. We met in a community centre, sharing
cups of tea or coffee, and sometimes we would have outings or picnics.
Often we had circular discussions, as we could not remember what
we had just said, so a frequent comment was ‘I may have told you this
before, but…!’ There was a lot of humour, a lot of openness, and a
feeling of all being in this together.
All of our friends from the groups were invited to our wedding, to
share in our joy. It was wonderful! I remember Eric (not his real name)
rushing in a little late, just as I was getting out of the wedding car. He
said to me ‘Oh, how lovely you look, and what a surprise to see you
here!’ Nora was sitting in her wheelchair, smiling, and greeted me
warmly after the service. In our group a few weeks later, she said I
looked lovely going down the aisle, in my gold dress. But then, just a
few sentences later, she said she was not there. As we gently talked
about this, she pointed to her head, and tearfully expressed her aware-
ness that up there, in her head, she had not been there. I choked up
with tears as I hugged her.
With Michelle, we then organised a workshop in 1999, for people
with dementia and their families. We wanted to see whether having
these groups was helping families to cope. We hoped to identify com-
munication problems, so we held two concurrent sessions: one for
people with dementia and one for their family members. The same
questions were asked of both groups. At the end, both groups came
together and each group reported their responses to our questions, and
there was a great deal of humour and enjoyment during this session.
The first question asked was: ‘Do you think “your family/you”
understand what the person with dementia is feeling?’ A common
thread in responses from the people with dementia was while their
family was the most important thing in their lives, the family didn’t
really understand what it was like not to remember the most ordinary,
everyday things. Yes, we all agreed it was a great idea to have a diary,
but sometimes, a lot of the time you had to be reminded to look in the
diary! We all agreed and were grateful to have the support of our
loving families, but what we all wanted was to be listened to, to be
asked what our wishes were.
One person told the story of how, literally days after his diagnosis,
his wife started to do every single thing for him. The thing that irri-
tated him most was the way she laid out his clothes for him every
morning as if he were a little boy. He felt he couldn’t tell her because
that would upset her, but he became so frustrated that he began to get
angry and shout at his wife. His wife and family of course were dis-
traught, and the anxiety levels of both the person with dementia and
his family increased to such a point that outside intervention was
required. All this anxiety because the person with dementia didn’t
want to hurt his wife’s feelings, and his wife of course thought she was
doing the right thing, but she didn’t ever ask.
When we asked people what difference coming to the group had
made, all the answers were very positive. For example, Jack (not his real
name), who was in his 70s and always happy to make cups of coffee,
said, ‘This is the happiest I have been for a very long time, it’s like a big
happy family. I feel 100 per cent better and wouldn’t know what to do
otherwise. I have more chance to talk, and no one is irritated –
everyone understands and listens. We are all in the same boat.’
Peter (not his real name) said, ‘I love this room, it is like my child-
hood cubby house, I can do and say anything in this room and nobody
will get upset or offended.’
Leanne (not her real name), who was always smartly dressed and
ready to go when we arrived to take her to the group, was very careful
getting the words right before she gave her answer. She had been a
teacher and one of her main concerns was losing her vocabulary.
Leanne said, ‘I look forward to it each week – though I forget the day!
Everyone has a chance to talk – we converse a lot. Being part of the
group has made it easier to live with my disease. It is very helpful, as I
need information to pass onto my family.’
Janet (not her real name) had not been on outings, nor had friends
to visit since being diagnosed. She had been reluctant to come to the
group at first, but after the first meeting she kept asking when the next
one would be held. She did not want to miss out! Janet told the group,
‘I love going out, having coffee, shopping, going to the movies with a
group of like-minded friends. A group of ordinary people doing
ordinary things together. We are normal again!’
When we asked if people wanted to carry on being in a group, all
of them said yes. Leanne said, ‘Yes – no “ifs” or “buts”, I’d miss it if I
could not come.’ And Janet said, ‘Just try to stop me!’
We then asked the families what they thought. Margaret (not her
real name) said: ‘Yes – he is more outgoing and not as withdrawn as
before. He seems brighter, happier and more chatty on the group day,
and has more conversation. Why not spend money on the people
themselves, not afternoon teas etc. for carers?’
Paula (not her real name) talked of her husband enjoying himself.
‘He comes back refreshed, and that in itself takes the pressure off me. I
get time out while he is at this meeting and he comes back more
relaxed.’
Alexander (not his real name) commented ‘It has been positive, and
provided a focus. She looks forward to it and enjoys talking about it.’
All the families agreed that these changes had happened within
about three or four meetings. We wanted to check with the agency that
had referred people to the group, to see if the changes that we saw
could be observed more objectively. The worker was asked to come to
lunch with the group and see if any changes could be observed. She
said:
When I shared the barbecue lunch with this group a few
months after I had assessed the clients I was struck most of all
by the sheer ‘normality’ of the event. This is not meant in any
patronising or condescending way. In fact it was clearly
evident that no one was being patronised or cared for; rather
there was a sense of mutual care and support and sharing and
most of all joy, good humour and firmly established bonds.
The second most striking change in all of the people
(whom I had visited at home previously) was their relaxed
facial expressions and posture. The tension and the sense of
hopelessness and defeat that I had felt were no longer in
evidence. No doubt, they still have many moments of feeling
these things, but at least they now have the opportunity to
deal with some of these feelings in a safe environment with
other people who know exactly what they are talking about.
Her words resonated with me, as they very much captured my feelings.
The hopelessness and despair that I had felt after diagnosis were
diminishing as I shared my feelings with others. I no longer felt alone,
and knew that the Association, particularly Michelle, was there to help
me. I was making new friends and going on outings, and I felt as if I
was helping, doing something worthwhile. I felt valued, and given

back my human dignity and respect.
During that year I relaxed into this newfound safety net of support,
and put my energies into helping out at the Association. But a rude
shock awaited me.
Battling the stereotype – if I can speak then I do not have dementia!

We were enjoying a dinner during the national conference in Perth,
just a month after our wedding. It was September 1999. I had spoken
at a plenary session on the last day about my experiences as a person
with dementia, and was tired yet happy to be involved and included, as
someone struggling with this terminal illness, who was trying to reach
out and help others understand what it was like.
At a nearby table, the Executive Director of one of the other State
Associations said, ‘But she lacks credibility as a person with dementia.’
He was questioning whether I really could speak on behalf of people
with dementia. I did not fit his stereotype of someone in the later
stages. I was devastated. In what way did I lack credibility? Did he
think I was faking it in some way? Why would I lie about having this
illness that everyone feared and was ashamed of ?
The next morning, there was a meeting to discuss support groups
for people in the early stages of dementia, and I joined this small
meeting in a sunny glass-walled room at the motel where we were
staying. A lady there made it quite clear that she didn’t want me there.
She found it too difficult to talk to someone with dementia, because
her husband had a similar diagnosis to me, and yet was unable to com-
municate. She found it far too confronting and emotional, so said
things to me, and about me, that I found were so hurtful, so much like
what had been happening in terms of no one believing that I really was
struggling with this disease.
I left the meeting in tears, and still I remember the pain of that time,
yet it made me even more determined to change this prevailing attitude
that if I could speak, I did not have dementia.
THIS CONTINUING BATTLE to overcome such negative attitudes adds to

my struggle with my illness. My diagnosis was questioned just the
other day, when I was interviewed by a journalist from the USA. My
diagnosis, she said, was nine years ago. It was no longer Alzheimer’s,
but something else. The subtext of her question was ‘Maybe you don’t
really have dementia, maybe you can’t really represent people with
Alzheimer’s Disease, who have the real thing.’
I tried to explain that the word dementia is an ‘umbrella’ term,
covering a number of diseases with similar symptoms caused by brain
damage. These symptoms include confusion, memory loss, speech and
other language problems. I said that we accept that the word cancer is
used for a number of different types of disease with similar symptoms
caused by uncontrolled cell growth. Whether I have Alzheimer’s
Disease, vascular dementia, Lewy Body dementia or fronto-temporal
dementia, I will still have similar symptoms caused by brain damage,
and be suffering from a terminal illness for which there is no cure.
But the fact that I am still here, speaking out, baffles those who
have this stereotype of someone in the late stages. If I can speak, I am
not sick. This is the big dilemma, the ‘Catch 22’ of dementia.
I am often asked whether I really have dementia, my diagnosis is
repeatedly questioned. But if I had gone public with, say, a diagnosis of
breast cancer, would my diagnosis then be questioned? Would people
want to see the lump, see the scars, receive proof of my illness? What is
it about dementia that makes people demand proof if I can speak about
my illness? Those in the late stages are the only ones with credibility, it
seems. But after diagnosis, there is usually a journey of several years, in
which we are battling the decline. And in this journey many of us can
still speak.
All of us travelling this journey have a right to be heard, to be
listened to, and to be regarded with respect. There is no time to lose to
hear our voice as we struggle to communicate.
THERE IS A commonly held view, too, that the various stages of our
journey can be categorised neatly into compartments, and that each of
us can be carefully assessed and fitted into one of these categories.
I recall in 2003 sharing the podium at an international conference
with a famous scientist, who has spent his career developing these
descriptors. There were three of us on the stage, and he spoke first, I
was to go next. He showed slide after slide, of graphs and tables
describing what exactly we people with dementia could be expected
to be like at each stage of our dementia, what we would no longer be
able to do, and how we should be treated according to our
step-by-step decline on this carefully described path. He sat down and
I walked across to the lectern.
I didn’t really know where to start, after such a scientific analysis of
me and my disease, so I simply said ‘I don’t know where I fit on the
stages you have just heard about. There are lots of things I can’t do
now, but there are others that I can still do, although perhaps you
would not expect me to be able to, according to the charts you have just
seen.’ My talk was a personal one, about being diagnosed with
dementia, what it felt like to be labelled, to be given this medical script
of decline in a certain time, and how I was still there despite all of this
expectation. The third speaker threw away his notes, and did a master-
ful job at summarising the scientific and personal perspectives that the
audience had just heard!
I am an individual, with a disease of my brain, the part of my body
that is very much influenced by my personality, by my attitude. Cer-
tainly the disease is affecting me, steadily taking away more and more
of my ability, but surely my individuality means it is going to be hard
to categorise my decline so easily and with such confidence. And such
charts and graphs and stages deny me my individuality, stripping me
of any credibility at still being able to speak after years of living the
journey of dementia.
We often hear of cancer survivors, people who have defied the
odds by lasting much longer than doctors have expected them too.
And we applaud their bravery, their courage, in this struggle to survive.
But when we people with dementia don’t decline as quickly as you
think we should, or seem to last longer and speak out for longer and to
be active, then you question our diagnosis.
Why is this so? Why can’t you cheer the dementia survivors?
Maybe many of us would survive better and longer if we did not have
to battle against the stereotype of dementia. Maybe many of us find it
easier to give up and act like you expect us to, not speaking much or
really ‘being there’.
Meeting my ‘cyber’ friends

I felt very alone, after that fateful dinner in Perth in 1999, when I
realised that my battle with dementia was going to lead to repeated
questioning of my diagnosis. But this feeling of being the only one
with dementia able to speak and to challenge the accepted view of
rapid decline into incoherence would all change in March 2000, when
I got a phone call from my dear friend in the Sydney Alzheimer’s Asso-
ciation library. She said ‘There is a man in the US, Morris Friedell, who
has Alzheimer’s who has bought your book from us over the Internet.
He’d like to get in touch with you. Would it be all right for me to give
him your email address?’
I agreed, and over the next few months, I found out about a new
Internet support group that Morris’ friend Laura Smith had set up,
called Coping With Personal Memory Loss. By the time of World Alz-
heimer’s Day that year, when a few of them gathered together for a
memory walk in the USA, this group became the Dementia Advocacy
and Support Network (DASN).
It was wonderful to get emails regularly from friends in the USA and
in Canada who also had a diagnosis of dementia, and yet like me were
still able to communicate, willing to speak out, and wanting to challenge
the accepted view of the late stages of the disease. Most of us were taking
anti-dementia drugs, and we were not willing to accept being categor-
ised into a medical model of decline according to set stages.
But maybe it was all too easy to hide behind our computer screens
and talk to each other about how we felt. How were we going to
change the attitudes we faced, those charts that said we had to decline,
otherwise we were not really people with dementia? How were we

going to challenge the idea of being the ‘patient’ or the ‘sufferer’, and
let the world know we were individuals each struggling with a
terminal illness?
Local and national advocacy

Michelle, our local Alzheimer’s Association director, encouraged us to
become involved in all the association activities. Soon she had co-
opted Paul to the committee, as the President, and before very long, I
had been elected to the management committee.
It was amazing to be involved in such a way, despite the stereotype
of being a person with dementia, supposedly lacking capacity for such
involvement. It certainly challenged a few people. But whenever my
capacity was questioned, I said ‘I am happy to do a mini mental status
examination, as long as everyone else on this committee also does one.’
This created some nervous laughter – no one was prepared to volun-
teer for this!
For me, the beginning of a long journey to change attitudes
beyond our local region, together with my ‘cyber friends in advocacy’
in DASN, began in March 2001.
Taking the first step

We stood anxiously at the top of the air-bridge as the plane taxied in to
Canberra airport. It was a sunny, but chilly day in late March. The
leaves were a vivid display of autumn colour, as we drove to the airport
that morning.
What would he look like? Would we recognize him? It had all
started as a journey into cyberspace. I had seen Morris’ photo on his
web site, so I hoped we would recognise him. But there he was, just as I
had imagined him, a small dark-grey haired ‘professor’ dragging
behind him a large suitcase, which turned out to be full of books!
We had an inspiring week. Morris and I had long talks about the
meaning of our individuality, reflecting on the atypical course of
everyone’s dementia, and discussing our struggle to be heard. We were

grabbing snatches of thought and creativity in our intermittent bursts
of energy, then fading into tiredness and blankness in-between.
Paul cooked and served meals, drove us around to see the autumnal
colours, and smiled at our sputtering bursts of meteoric energy,
followed by blank spaces of exhaustion. He laughed, and said ‘I feel
like Freud’s wife when Einstein came to dinner, when I overhear you
two talking about the meaning of life and death while I am in the
kitchen!’
A few days of relaxing, and talking, and then we drove into the city
of Canberra, for the national conference, where Morris and I were to
give a joint plenary address.
I was exhausted. I had spent months preparing the talk, using
PowerPoint for the first time, and incorporating both of our thoughts
and ideas in a set of slides, exchanging numerous emails with Morris as
we developed our presentation. Also we had been preparing material
for special sessions for a dozen people with dementia from all over
Australia who were attending this national conference. It was the first
time in Australia, and perhaps in the world, that people with dementia
were welcomed and encouraged to be active participants in a national
conference.
I had spoken to each of these people on the phone. But several
times I had to first explain to the spouse that I really wanted to speak to
the person with dementia, because it was their views that were being
sought, and their attendance at the conference being supported and
encouraged. It was almost as if the person with dementia in that home
was invisible, not allowed to come to the phone, no longer valued for
their insights.
At the venue, Morris and I looked around the quiet room for these
special sessions, with its comfy chairs, coffee and tea, and agreed it was
a wonderful haven of rest during the busy conference. Both of us were
to use it frequently over the next few days, to retreat from the bustle,
and have some ‘brain time-out’, to restore our energy each time we
faded with exhaustion.
For the first ‘getting to know you’ session, we stood anxiously at

the door, to welcome each person as they came in. Carers hovered, not
wanting to leave, and seemed very reluctant to let the person with
dementia go in by themselves. It almost seemed as if they wondered
why we would bother to listen to them, and whether they would be
safe. Certainly they did not believe that we too were living with
dementia.
In our final session, we were joined by the National Executive
Director, Glenn Rees, as well as the President, Dr Robert Yeoh, of the
Australian Alzheimer’s Association, who both listened carefully and
questioned us about our thoughts on what the Association was doing.
As people with dementia, we were being validated and respected. The
Executive Director is a quietly spoken, tall man, with a gentle unas-
suming manner, who had been only recently appointed. He had been
very supportive, and made me feel very hopeful at the prospect of
people with dementia being heard and being included. The President
was a much shorter man, with a very welcoming smile. He is a doctor
with a passion for helping families coping with dementia. They both
made us feel that our views were being heard, and their willingness to
listen gave us hope that people with dementia might be able to play a
role within the life of the Association. The Consumer Focus Report
10
which we produced is published by Alzheimer’s Australia.
The next day, Morris and I nervously walked up the steps to the
platform, in front of a huge audience, hidden behind the lights that
shone in our eyes. Paul and I had just spent a few hours with Morris, in
the quiet room, helping him practice the speech, to read the words we
had written, and to look up at the audience every now and then. Now I
was to lead off our presentation, and then Morris would speak, in this
plenary session on the final day of the conference.
Our slides spoke of the ‘toxic power of the pointing-bone’ of diag-
nosis. I described how it seems as if our world has come to an end,
when we experience a defeat of spirit and of hope. We feel extreme fear
of further loss, and dread what the future holds.
I quoted from an email of our friend Carole Mulliken on DASN,
when she said ‘The day before our diagnosis, we each could be vital
and intimate partners in our personal relationships. The day after we

11
had become a liability, like a pet, a mortgage or yesterday’s laundry.’
Morris had been a sociology professor, I had been a senior public
servant. But overnight each of us had become simply another case of
dementia. We were expected to withdraw from the world’s stage and
be assigned only the smallest walk-on parts. For me it seemed as if
from then on I would only ever be allowed to function with my ‘carer’
in attendance. How come so much had changed overnight?
When Morris stood up to speak, he said:
Our brain scans symbolise the moment of diagnosis, when
our lives changed forever. By giving this talk, and functioning
in this context, we are challenging the view that the person
with dementia must lack insight, ability or judgement. You
may be tempted to think that we are somehow misdiagnosed
or the disease hasn’t hit us, or that our ability to function here
is so exceptional that it is irrelevant to other persons with
dementia.
But what if we were young persons who had suffered head
impact in a motor accident and had analogous diffuse brain
damage? And suppose we had rich and loving parents who
sent us to top-notch rehabilitation programs and nourished us
with vital hope that we could recover rich and productive
lives. Our success then would not be so strange.
By this time in our joint presentation, the serried rows of heads
watching us were motionless, nothing moved, and you could have
heard a pin drop. Paul, who was sitting high up, in a back row, said he
could see white tissues all around the rows of people below him, as
moist eyes were dabbed, and our words reached into hearts and minds.
Morris went on to say:
All that is given to persons with dementia is ‘hospice in slow
motion’. We reject this. There is life after a diagnosis of
dementia, for both ourselves and our families. The toxic lie
is that our abnormal brains make us biologically inferior.
Haven’t I heard about ‘biological inferiority’ somewhere

before? The Nazis…the Holocaust.
Speaking as a Jew, these words were very powerful, and more white
tissues rustled and flurried around the audience as Morris carried on:
We need to live a contradiction to the toxic lie of dementia –
to live an exorcism, as it were, countering the curse of the
pointing-bone of diagnosis. We can be guided to simple ther-
apeutic behaviours in which failure is unlikely, and through
which we can start to recover our shattered sense of compe-
tence. We can discover ways of participating in life through
giving and caring which restore our sense of value and
meaning. Thus strengthened we find that again we can face
and surmount challenges, and affirm our courage and dignity.
Now, as I reflect on Morris’ words, and reproduce them here, I realise
how they truly marked a ‘sea-change’. They were the beginning of
speaking out with power and dignity, to challenge current attitudes
and to look with hope to a new future. The ripple effect of his words
were to reach well beyond Canberra, to Australia, and beyond. He
said:
It’s as if we are bilingual or bicultural. Exiled from our past
lifestyle we have lots of time to deeply and creatively relate.
And we are conscious of the preciousness of our brief sojourn
on earth. Having survived trauma, we know our strength. Our
cognition may be fading, but we can draw on powerful
resources – our emotions and our spirituality – to relate to
you. Having been where you are, we can reach out across the
divide to touch you in a new way.
He spoke of how we in DASN knew what it feels like to have the ‘de-
generating sense of nobodiness’ that Martin Luther King described as
affecting black Americans. Morris talked of how the Dementia
Advocacy and Support Network International (DASNI) aspired to
change views, quoting King, who had encouraged his people to
‘protest courageously and yet with dignity and Christian love’, qualit-
12
ies which would be remembered by future generations.
I then walked to the lectern, feeling inadequate to follow on from
this powerful message, but concluded our joint presentation by saying:
As dementia survivors, we know both the world of ‘normals’
and that of dementia intimately, and we have weathered an
extraordinary transition. By making this presentation, we are
claiming our full participation in cultural life, and making a
stand for all people with cognitive limitations. Morris and I
are in solidarity as Christian and Jew, as persons with Alzhei-
mer’s and fronto-temporal dementia, as Australian and
American.
We seek to work towards transforming our culture to one
honouring human dignity – or humankind as created in the
divine image. Let’s be companions together on this journey
13
towards dementia survival with dignity.
I sat down next to Morris, relieved, and tired.
We were puzzled, because the chair of our session tugged us both
to the front of the stage. We realized that the applause was continuing.
I peered into the glare of the lights and realised the entire audience was
standing up clapping. Morris and I were overcome, and we nervously
acknowledged this overwhelming support.
At the end of the conference, people with dementia came to the
microphone and spoke, saying things like ‘I have never spoken
publicly about having dementia before.’ They were crying as they
shared how they felt, and how this conference had made them feel
welcomed and affirmed.
It was the beginning of a long journey, that was to take us round
the world in cyberspace, as well as face to face. The first step towards
changing attitudes towards people with dementia had been launched
in the autumn colours of Canberra. The next step was to take place in
the summer warmth of Montana.
Going global
Paul had organised a trip in July that would take us to New Zealand for
a few days rest, then to Montana for a week of work with our DASNI
friends. After that, we would be going to Toronto to meet with the
Canadian Alzheimer’s Society, and on to London to meet with Alzhei-
mer’s Disease International (ADI). On the way home we planned to go
to Berlin to a friend of mine for a day or so, then Poland, where Paul
wanted to stay a few days to show me where he once lived.
All in all, it was going to be a whirlwind tour, with very little rest or
downtime, and lots of work, papers to write and to print out, people to
meet and to talk to. I was exhausted at the thought of going, but so
grateful to the pharmaceutical company that sponsored our tickets to
go to Montana and London.
Teddy’s world travels

My youngest daughter, Micheline, came round to say goodbye, before
we left on our long journey. She gave me a carefully wrapped gift, and
delightful card with a picture of a teddy bear. I opened the package and
there, sitting in a little box, was a real teddy bear just like the picture,
with a pink heart on a white knitted jumper saying ‘I love you
Mummy’.
Micheline asked me to take out the bear and pack him for our trip,
and put him back in his box when we were safely home. So that
evening, Teddy was packed in my backpack, ready for his
round-the-world trip. It was going to be an exciting, yet tiring time for
the little grey Teddy, and he would have his photo taken in many
places around the world.
I made a lovely album for her sixteenth birthday, called ‘Teddy’s
travels’. On the first page he is sitting shivering in the snow of New
Zealand in late June 2001, and a few pages later he is sitting in
Montana in the sunshine. Looking at the pictures now, they are a won-
derful memory for me, as these views are no longer in my head. I turn
each page, seeing each place, each event, each person. There I am
holding Teddy, and there is a silver pen caption for each photo. I smile
as I see myself in all the various places, holding Teddy, but there is a
curious disconnection.
I cannot really recall being there, and have no other recollection
around the event in the actual photo. It does not trigger any other
sights or sounds to run in the video recall of my head. But obviously
the evidence is before my eyes, so I was there and I can today still enjoy
these past events by looking at the pictures, people smiling, interesting
places, and some special family members that I recognise.
Teddy is there in each photo, and now he is over there in his box
next to my desk, back from his travels. He is a reminder that he and I
were really there!
Teddy in his box
A whirlwind of media and packing

The weekend before our trip overseas, I was anxious, and felt as if I was
stepping into the unknown. We were embarking on a global, yet
uncertain mission to meet with others in Montana, and with ADI in
London.
It was frantic, busy, packing, finding space for Teddy, deciding
what to take, how many medications I would need, and so on.
In-between this flurry of activity, we needed to remember to watch TV,
to see some media coverage of our lives. That weekend, early on the
Sunday morning, the programme Sunday Sunrise showed a segment
called the ‘Long Goodbye’, about our lives together and our hopes for
the future.
Most memorable for me was the shot of Paul and I walking hand in
hand by the smooth lake in Canberra, on a crisp autumn day, looking
at the black swans gliding smoothly through the water, as the sun just
began to set. The colours were magnificent, and it was a very peaceful
and meaningful moment captured on film. But in many ways it rein-
forced the image of walking into the sunset, rather than a new life in
the slow lane, with new activities and opportunities.
However, another report, shown on the Monday, the 7.30 Report,
gave a very different view, reporting that I had recently received my
graduate diploma in pastoral counselling. The presenter opened our
piece, saying:
Seven years ago today, Christine Bryden was awarded the
public service medal in the Queen’s Birthday honours awards.
At the time, she was a high-flying public servant, working in
the Prime Minister’s department. The following year, Chris-
tine was diagnosed with a form of dementia. …she ‘refused to
treat dementia as an insurmountable barrier’.14
In my interview I said ‘You can actually challenge that brain and rewire
bits. I’m losing bits of brain, but I’m teaching other bits of brain how to
do things.’
But perhaps I was overdoing it? Maybe I was doing a bit too much
teaching of my brain? This trip to Montana and to London and back
was certainly going to be exhausting, and maybe I should not step out
like this, and maybe I should leave it to someone else to advocate for
people with dementia? I know my daughters have thought that many
times since my diagnosis.
I remember my eldest daughter Ianthe becoming quite exasper-
ated with my busy and stressful life, saying to me, ‘Mum, why can’t you
“do dementia” like any other normal person and just rest at home!’ She
was thinking, why did her Mum have to be such a ‘workaholic’, and
keep on making such a huge effort, and getting stressed and tired
because she was clearly struggling with a terminal illness. She was
worried I would decline faster because of my strenuous efforts.
I can’t answer that question she posed, as to why I have been so
driven to change attitudes, to challenge the stereotype, except to say
that I feel deeply for all those with dementia who simply cannot draw
together the threads of enough energy, nor enough collected and col-
lective thinking, and who are subjected to a great deal of misunder-
standing.
Until you can truly try to see the world from our perspective, the
people living this journey from diagnosis through to death with
dementia, you cannot empathise, you cannot provide the care we need
to travel this traumatic road. I simply hope that one day all people with
dementia will be treated with dignity and respect, and our care
partners and care workers will do all they can to understand our needs
despite a lack of verbal communication.
It was this hope that took me to Montana.
Montana mountains
It was late June, and we walked down the slate steps of the airport
arrival hall, past large moose heads and bear heads hanging on the
walls. There was Morris Friedell, smiling, ready to welcome us to
Montana. We chatted as he drove us to Laura Smith’s family farm-
house, which was in a green valley, with mountains in the distance.
DASN had arranged over the Internet to meet at Laura’s place, and
a few mobile homes from around the USA were parked on the grass,
and the house was bustling with arrivals. Lynn Jackson had already
flown in from Canada, and Jeannie Lee from Hawaii. Jan Phillips and
Mary Lockhart were both there, with their husbands, having driven
from their US homes in their mobile homes. Carole Mulliken, Alice
Young, and Candy Harrison were all there – it was a very joyful time to
be meeting with people I had only seen as names at the bottom of
emails, very special people to me who were sharing my journey with
dementia. It was exciting to realise that all eleven of us were each able
to communicate, to share, and to work together to try to achieve

change as a group.
We agreed to meet together the next day, and Paul said he would
help take notes. We talked about our chat room, our email community,
and our vision of being a global internet-based advocacy and support
network for people diagnosed with dementia.
Each of us had been through the trauma of diagnosis, and each one
was searching for support and acknowledgement from our Alzhei-
mer’s Associations. Morris was full of praise for the Australian Alzhei-
mer’s Association, and how earlier that year in Canberra, it had been so
receptive of the sessions for people with dementia, and was taking our
views into account.
DASN friends in Montana, from left: Phil,
Alice, Mary, Morris and me

Candy, Carole, Lynn, Jeanne, Laura,
Paul carefully took notes, and each time we stopped for a rest, he
would scurry away to Morris’ room and type up a record, print it out
and distribute it. But each time we resumed a topic, at least one of us
had lost our notes, or forgotten to bring them along. We laughed, and
realised we were coping despite our memory loss, and that we needed
to acknowledge we were in a new area of endeavour, working together
as people with dementia as advocates for the future. We could have a
long and rational discussion, followed by carefully argued and agreed
decisions, but we would all forget what we had talked about, and even
lose the pieces of paper on which these agreements were recorded for
posterity.
It was a true God-send to have Paul there to capture our thoughts,

to reflect them back to us, and to patiently copy yet again our papers
for us when we lost them. We agreed to call ourselves DASNI, adding
international to the title, and volunteered for various tasks on the new
Board of Directors. This new Board then met again after more rest
time, to look at a proposal that Morris and I had drafted in the previous
months.
The proposal to ADI

We had been emailing each other, developing this proposal for Alzhei-
mer’s Disease International (ADI), responding to its annual report of
that year, which stated that: ‘all the ordinary pleasures of life…are no
longer possible’ for the person with dementia, and ‘The mind is absent
and the body is left as an empty shell.’
We started the draft DASNI paper with the following paragraphs:
The dominant paradigm for Alzheimer’s Associations around
the world to date has been the provision of support for
care-partners of people with Alzheimer’s Disease. Therefore
by default the focus of Alzheimer’s Disease International
(ADI) has become the provision of care for people in the
moderate to late stages of the diseases that cause dementia,
and more particularly support for the families and
care-partners of those with Alzheimer’s Disease in the later
stages.
Now that diagnosis is occurring earlier, and anti-dementia
drugs are available to retain function for longer, people with
early stage dementia are themselves also seeking information,
advice and support from local Alzheimer’s Associations.
However, current strategies are aimed at the later stages of
care, and directed towards the care-partner, who needs a great
deal of support in providing the type of care people with later
stage dementia require.
Then we noted the new charter of principles being drafted by ADI,
and how these contrasted with that bald statement about the mind
being absent and the body remaining as an empty shell. We said that
this type of thinking strips us of both respect and dignity, as clearly we
are not seen as functioning, useful people.
The paper went on to talk about a growing group of people with
dementia who want to rebuild their lives and to regain self-esteem, and
need recognition and inclusion, opportunities to network and contrib-
ute. It finished with the following recommendation:
ADI and its member organisations should make provision for
people with dementia, as well as their care-partners, to con-
tribute to the range of its activities including policy, program,
conferences and advocacy and to participate in management
and advisory structures.15
We talked about this paper as a group, sitting on a variety of chairs and
cushions in the farmhouse at Montana. We agreed that I would take it
to the head office of ADI in London the next week. Paul busily final-
ised the document and emailed it to ADI, making arrangements for us
to visit while we were staying with my mum in London.
Looking back it was a momentous time. We adopted the slogan ‘act
locally, think globally’ and we were excited at the prospect of trying to
change the world, starting with that one small step of our meeting in
Montana.
The farmhouse ‘incident’

That evening, six of us went into the nearby town for dinner,
exhausted but exhilarated with our newfound global advocacy action.
Paul was the only one without dementia, but you would not have
known it, to look at this motley, yet normal-looking group going into
the restaurant. We studied the menus, carefully made our various selec-
tions, and then the orders started to arrive.
The waitress said, ‘Who ordered the pasta?’, and was met by blank
looks, then, ‘Who ordered the fish’: more blank looks. And so on. Paul
came to the rescue, allocating the right order to the right person.
Thank goodness he was there!
A few minutes later, just as I was chatting to Lynn animatedly about

our day’s activities, I got stuck in mid sentence, as so often happens to
me, as I tried desperately to find the word for the place where we had
been meeting. Lynn knew I was trying to come up with the word
‘farmhouse’, and was about to tell me, but she was also struggling to
hang onto the thought that we should order some wine, and so we
needed to ask for the wine list.
At that very moment, as these two thoughts were tumbling about
in her head, the waitress walked by our table, so Lynn caught her atten-
tion and said, quite firmly and clearly, ‘Do you have a farmhouse?’
meaning, of course ‘Do you have a wine list?’ But this is not what came
out and not what the waitress heard. But the waitress took this in her
stride, and started to tell Lynn that her family indeed did have a farm-
house, but that now they lived closer to town to help out in the restau-
rant.
As she went away, we all looked at each other and laughed. This
was so typical of what could happen to us, as people with dementia –
thoughts tangled up in our heads, crossed wires misfiring, and odd
words coming out. Paul eventually caught the attention of the waitress
and asked for the wine list.
We have no idea what the waitress thought of us – not knowing
what we had ordered, asking about farmhouses, and yet looking so
normal. Perhaps we should have stuck labels on ourselves that we were
people with dementia, then maybe she would have understood. Or
would she? Maybe then she would expect us not to be able to speak, or
even be in a restaurant?
Going to London
The next day we were farewelling our new friends, my colleagues on
this journey with dementia, and boarded the plane that would eventu-
ally take us via Toronto to London.
We found our way under the bridges and walkways of the busy
rumbling of Waterloo station, to the insignificant front door of ADI.
We buzzed and were let in, making our way up several flights of stairs
to the offices. We were welcomed and shown into the small meeting
room. Paul and I sat on one side of the big table. On the other side were
the Chairman, Executive Director and staff officer of ADI. It was 29
June 2001, and what I have before me now are a few notes Paul took of
that meeting.
The Chairman, Dr Nori Graham, outlined how ADI had been set
up in 1984, and that it provided material for members, with the annual
conference being its main activity. She was business-like, and quite
formal, as she took us through the history and outline of current activi-
ties.
Then it was over to me to speak to the paper we had sent across
from Montana. I felt as if I was being very carefully observed. Had I
really helped to write the draft of this paper? Was there really a group
called DASNI who had discussed it and submitted it to ADI? Or was
Paul really the instigator, the person pulling all the strings? Was I some
kind of ventriloquist’s dummy?
I began by talking about DASNI and then outlined the proposal
we had prepared, and its recommendations that ADI be inclusive of all
dementias, and that it should provide support to people with dementia
as well as their care-partners. We were also proposing that ADI and its
member organisations should enable people with dementia, as well as
their care-partners, to contribute to the range of its activities including
policy, program, conferences and advocacy, and to participate in man-
agement and advisory structures. I concluded by saying
We people with dementia recognise the tremendous support
provided by ADI and its member organisations to our
care-partners, and want this to continue. We seek recognition
and inclusion alongside our care-partners, as companions on
a journey of care.
It’s all very new territory, as we people with dementia are
speaking out, maybe getting diagnosed earlier with the new
technology, and given a new lease of life by the new
anti-dementia drugs now available. We are using our
remaining abilities to push the boundaries and to enjoy life
while we still can. Thank you for giving me this opportunity
to speak to you on behalf of the Dementia Advocacy and

Support Network. I would be very interested to hear your
reactions to what we are proposing.
I finished talking and there was a silence for a while, then smiles broke
out all around, and Nori came over and said ‘Is that a Maggie?’, refer-
ring to my multi-coloured Australian designer jacket. We chatted
much less formally now, and it very quickly became clear to me that
this was a very welcome approach by DASNI, and that ADI was very
open to hearing our message of people with dementia wanting to be
heard, seeking to be included.
Within a few days, our new DASNI President, Phil Hardt, received
a letter from the Executive Director of ADI, thanking him for the
proposal, which would be circulated to all members in advance of the
international conference in Christchurch in October 2001. The plan
was to set up a working group to prepare a response for consideration
at the annual conference in Barcelona, in October 2002.
Phil replied, saying
Your plan of introducing our recommendations to ADI in
such a timely manner is to be applauded and your encourag-
ing remarks to all members of ADI to begin including
person’s with dementia in meaningful positions is also enthu-
siastically supported by DASNI. Such inclusion will make
ADI the role model and benchmark for the future!16
DASNI had made a difference! Our gathering, our working together
to stand in solidarity as people with dementia, had an impact, and each
one of us felt encouraged. We could almost hear the effect of our coop-
eration in ‘thinking globally’, and I see now what Hakuin, the Japanese
monk and famous writer, meant when he said ‘If someone claps his
hand a sound arises. Listen to the sound of the single hand!’17
From such small beginnings in the autumn colours of Canberra, to
a gathering in Montana of people with dementia willing to think
globally, came this great step towards new hope for support and recog-
nition for people with dementia. And it had all just taken three
months!
Christchurch – a chance to shine!

It was ‘full steam ahead’ for dementia self advocacy from that moment
on. We got back to Australia, to the wintry chill of Canberra in late
July, and there was an invitation waiting for me to speak at the opening
plenary of the ADI conference in Christchurch, New Zealand, in
October.
A wonderful lady, Verna Schofield, from New Zealand got in
touch. She was on the ADI Board, and was a real champion of people
with dementia. She helped make sure that at that conference in
Christchurch there were sessions for us, and a quiet room; that we were
involved in all sessions, and our voice was being heard.
There were quite a few from North America who decided not to
come, given the changed world they now faced after 11 September
2001, but a few brave souls made the trip, including our newfound
friends from Montana, Morris, Lynn, and Jan and her husband. It was
so good to meet with them again, to celebrate what was being achieved
since Montana.
The DASNI booth

Jan Phillips had put together an amazing booth to showcase what
DASNI was, and what we stood for. The booth was a major attraction,
as many delegates had not spoken to a person with dementia before,
despite being active in the Alzheimer’s movement. The DASNI logo
was prominent in her display – a turtle with wings, and a
‘forget-me-not’ flower in its mouth. The slow-moving turtle symbol-
ised our journey with dementia, the wings expressed our desire to rise
above this battle, and the flower was there to remind you to
remember us. The Nyanja of Malawi have a won-
derful saying that captures how we felt, as
DASNI logo
turtles who had been able to fly: ‘Little by

little the tortoise arrived at the Indian
Ocean.’18
Jan had prepared a basketful of bookmarks, with colourful ribbons

spilling over, and brochures about DASNI. She had spent months at
her printer, and buying materials, gluing and folding. There were ear
plugs for us to use and to hand out, to help with the noise of the con-
ference. There was even a video of each of us being interviewed during
our time in Montana.
The results were spectacular, and Jan had created a masterpiece.
Christchurch was truly a chance to shine, to launch our self-advocacy
as people with dementia onto the world scene, setting in motion a
whirlwind of change!
from left: me, Morris, Lynn, Jan and Alan

DASNI friends at Jan’s booth in Christchurch,
Challenging a stereotyped view

I was nervous, and shivering – not just from the cold of Christchurch –
when we walked into the venue for the welcome session for presenters
and other notables in ADI. This reception was being held the evening
before my talk, when I was still incognito, an ‘undercover’ person with
dementia.
I was sipping my wine and nibbling on a biscuit, when this very tall
man and his wife came over to introduce themselves to us. He asked
how I came to be involved in the Alzheimer’s movement – this is a
common enough question at such functions. But my answer was far
from what he had expected: ‘I have dementia, that is how I have
become interested and involved.’ He was speechless, and said he had

never met anyone with dementia before. After this uncomfortable
moment, we chatted and were soon able to overcome the awkwardness
of my ‘coming out’ with dementia, and the challenge this presented to
‘normal’ expectations of what I should be like. I have become used to
this type of ‘introductory moment’ now, when I have to say I have
dementia, and deal with the reaction.
The next morning I gave the opening plenary address in the
Christchurch conference centre, the first person with dementia to do
so at the annual ADI conference. My talk was called ‘Diagnosis, drugs
and determination’, about my journey with diagnosis, and how the
anti-dementia drugs and a positive attitude had been important in
maintaining function. I had prepared a new PowerPoint presentation,
in rich pinks and purples, with striking pictures from computer clipart
on each slide. I had also managed to insert my latest scan on one of the
slides, to ‘prove’ my credibility as a person with dementia.
It was a huge hall, with over a thousand people there, and I was
awestruck to receive a standing ovation. The biggest joy, though, was
to be able to mingle with all my friends with dementia afterwards, and
to feel not alone in being able to talk, in being able to present myself as
something other than someone in the last stages of dementia. But I
really needed all of their support. Someone overheard, after my pre-
sentation, a doctor challenging the scan that I had shown, saying it
could not be mine otherwise I would be unable to talk. Was he saying I
was falsely claiming to have dementia? Was he saying that I had put
my own name on the scan, instead of someone else’s? Yet again, I was
not meeting the stereotype of someone in the late stages, and yet again
I was facing a lack of credibility.
But here in Christchurch, there were others who were able to
express how they felt and were challenging the stereotype. Jan had
prepared an amazing booth, Morris had prepared an inspiring
workshop (which was standing room only), and Lynn had given media
interviews as President of DASNI.
This time I was not alone!
Meeting together
It was great to meet with over a dozen men and women with dementia,
aged between 51 and 76, at special discussion sessions which Morris
and I had prepared. We had a range of diseases (Alzheimer’s Disease,
vascular dementia, fronto-temporal dementia and frontal lobe
dementia), and had been diagnosed from as early as 1990 to as late as
the previous year (2000). We had come from New Zealand, Australia,
Canada and the USA, and it was just so wonderful to share our
feelings.
We talked about how our emotions – at times overwhelming and
frightening – seemed to be out of control, and that it was like being on an
emotional and unpredictable ‘roller-coaster’, which was embarrassing.
As we sat around in a group, it was really encouraging to realise
that all of us felt that the spiritual dimension was important, whether
this was religious rituals, the garden, music or whatever gave us a sense
of meaning. We had a great discussion about animals, because they
needed and loved you unconditionally, even if you could not
remember their names!
Brian McNaughton from New Zealand captured the special nature
of our group sessions so well and so poignantly in his letter posted to
DASNI after the conference, saying
We cried with each other as we told our stories and shared the
fears of a progressive illness that would finally take our minds
away, and laughed at the burnt toast, the half cooked dinners,
the forgotten appointments and all the many wonderful situa-
tions only we with dementia get ourselves into.
The love and support we received from each other created
a passion that empowered mind and spirit. This gathering was
a most rewarding and encouraging experience. We shared
laughter and tears, deep dissertations on living and dying.
Through it all we gained strength from being together. It
humbled me greatly to experience the depths of faith and
humanity and the heights of love and support offered by my
19
fellow journeymen.
Handing on the relay baton

For DASNI, the ADI conference in Christchurch in 2001 was a won-
derful affirmation of those tentative steps taken in Montana earlier that
year, of local action translating in global outcomes. And it was a real
boost to receive a letter from the ADI conference organisers:
You created a world first for people with dementia actively
participating in an ADI conference – and in doing so, added a
unique glow to the conference. Your example has achieved a
great deal by creating a precedent that will encourage others
to follow.
In being so open to talking to other conference partici-
pants and to the media, and the DASNI international stand,
awareness of dementia has been considerably heightened
in this country. Public misconceptions have also started
changing about the effects of early stage dementia and the ca-
pability of people to manage their everyday lives. This was a
20
precious gift to offer.
DASNI had indeed offered a ‘gift’ to ADI and to the global dementia
movement, but in many ways for us people with dementia, it was a
relay baton that we had handed over, not a gift. It was only the begin-
ning, the first steps.
We felt like we had been the first runners in a relay race. We knew
we could only run the first stretch, because each of us had progressive
illnesses that would take our ability away bit by bit, so that we would
no longer have as much energy to try to change attitudes.
So we ran this first part of the race, and we handed the relay baton
over to ADI. From then on, ADI was off and running the rest of the
race.
Barcelona and beyond

Soon after the Christchurch conference, another ADI working group
was set up, and it included three people from DASNI, as well as a
person with dementia from the UK, Peter Ashley. The previous ADI
working group (leading up to that conference) had been looking at
ways to include people with dementia in the life of ADI, but this group
was to be more task-focused, revising the ADI Charter for Principles
of Care and developing a fact sheet for Alzheimer associations and the
ADI intranet pages.
DASNI was looking forward to the next conference in Barcelona,
in October 2002, and again Phil wrote to ADI proposing that a person
with dementia be invited to present a plenary address on the first day
of the Conference, that there be special sessions for people with
dementia in a quiet room, and a booth for DASNI.
Lynn and I met once more in Barcelona, but Jan and Morris had
been unable to make it, and our other Australian and New Zealand
friends were not able to come, so we were a much smaller group. But
Jeannie was able to come over, all the way from Hawaii, and it was
great to see her again, a year after having first met her in Montana.
We unpacked the box for our booth, and took out some great
T-shirts and caps that Jeannie had prepared for DASNI, as well as
unloaded the brochures we had printed in Australia. As we were busily
arranging and sorting all the materials, an English gentleman came
over to introduce himself. It was Peter Ashley, who we had ‘met’ over
the internet as part of the ADI working group, and who was going to
give the plenary address the next day.
We were thrilled to sit in the audience and see Peter give that
speech in Barcelona. The chair of the session was overcome as he
finished, and we all stood up clapping. A very small group of us,
people with dementia from Australia, Canada and the USA, were in the
dark of that audience, cheering our colleague as loudly as we could,
encouraged that someone from the UK was joining in our efforts in
advocacy.
But by early 2003, some of us in DASNI were flagging, tired, no
longer as focused or determined, less able to self-advocate as actively as
before. We were also perhaps a little disappointed that the Barcelona
conference had not been able to support the attendance of more than
just a few of us. And we were each just a bit further into our individual
journeys with dementia.
Marilyn, me, Lynn and Jeanne

DASNI in Barcelona, from left: Peter,
But we had handed the relay baton onto ADI, and Verna Schofield was
setting a furious pace. At times I was unable to keep up, and felt dis-
couraged and dispirited at the inevitable conflicts that occurred, but
she was a great encourager, writing to me, saying, ‘You know, you are a
constant source of inspiration to me. Whenever I start to flag, I think
about all that you have achieved in the past few years and the truly
remarkable pace of change made in promoting the cause of people
with dementia since the last Alzheimer’s Australia conference.’21
You talk…about passing on the baton. The image that arises
for me of your advocacy over the past couple of years is of a
stick being carried down a fast flowing stream, with you and
DASNI members providing the momentum of the rushing
water. The task of others was helping to keep the stick
flowing freely until it reached calmer, more accepting
22
waters.
Looking at her words, they help me see the big picture whenever I feel
like giving up because of difficulties in the short term. I realise I am
floating on a fast stream, carried by all the supporters of people with
dementia around the world. It is truly exciting to see so much happen-
ing so quickly!
But we were all exhausted by mid 2003. It had been a long two
years of struggling to keep afloat on this stream, yet we felt relieved
that others would benefit – those who would follow that journey of a
devastating dementia diagnosis, and then a feeling of exclusion both
from society and from those organisations supposedly set up to assist
families with dementia. Perhaps from now on, the person living with
the diagnosis would find the help they needed.
For those of us who had met at the farmhouse in Montana, it had
been a long two years of battling with our losses and our decline. Yet a
few of us remained active in cyberspace to see the fruit of our labours –
to see how acting locally and thinking globally can actually change
things.
And we were amazed by the speed at which the international
movement was working. The last part of the relay race was gaining
momentum, and little did I know that I was to be expected to continue
running in the race, to keep hold of the baton. It all became evident at
the next ADI conference in Santo Domingo in 2003, which was to
bring with it a huge surprise!
Whatever next!
Paul and I sat in the back row, watching the ADI Council members as
they worked through their agenda. There were at least 50 countries
represented around the table, and it was awe-inspiring to see the global
dementia movement at work, collegiately and supportively working to
improve the lives of families living with dementia. And people with
dementia from Scotland, Canada, Puerto Rico and Australia were
there, joining them at the table.
It was hot and sticky in the Dominican Republic, and we had
walked for half an hour to get to the hotel where the meetings were.
We were on the other side of town, in more modest accommodation,
along with South American countries, India and Pakistan. I was a bit
sweaty from the walk, and very confused from finding our way across
town, and then gaining access to the room for the meeting.
I was having difficulties walking along unfamiliar streets, and Paul
had steadied me by holding my hand so that I would not stumble and
fall. I found the traffic, and the sights and sounds of our walk challeng-
ing and disturbing for my thoughts. By the time we reached the venue,
I was flustered and agitated, and it was difficult to settle into the
meeting. So I fidgeted and looked around at the representatives from
all the member countries, as we sat down in the cool air-conditioned
room.
I had reluctantly agreed to be nominated for a possible seat on
ADI’s Executive Committee, as ADI had decided to have up to two
people with dementia on this committee. This was a great outcome
from the working group recommendations, but I was hoping others
would be able to take up this opportunity, so giving me more time to
rest and be with family. I was feeling ‘burnt-out’ and tired of running
this race, advocating for people with dementia.
So I had mixed feelings about the nomination. I was not sure of the
procedures, nor what was going to happen. All I knew was that voting
would be later on in the day, so I was relaxed and simply watching
what was going on. Orien Reid Nix, the Vice President of ADI, stood
up to report on the outcomes of deliberations on governance. As she
gave her lively and visionary presentation, we heard about the new
campaign for World Alzheimer’s Day, ‘No time to lose’, encouraging
all members to unite their efforts in raising awareness about the global
impact of dementia. DASNI was mentioned several times as a valuable
network of people with dementia throughout the world which can
provide input to ADI activities, both through local and national associ-
ations, as well as directly through the Executive Committee.
By the time Orien had finished speaking, I began to realise that
people with dementia had been nominated alongside others, for the
two vacant positions on the committee. Should I be one of those
elected, I would have equal responsibility and accountability for a
period of three years. This was an alarming thought for someone with
a progressive illness! I had hardly recovered from this realisation, it
seemed, before the votes for the five nominees were being counted,
and there I was elected to the board of ADI for three years!
I stood up, my heart in my throat, as I said, ‘I feel humbled and
honoured to be elected, and will do my best to represent the 18
million people around the world who are struggling, along with their
families, with the various diseases which cause dementia.’
I still feel every bit as overwhelmed as I did that day, to be trusted
with the honour of this task. Mind you, part of why I felt so overcome
with the thought of further work and effort was the sheer exhaustion I
was experiencing by the time of the Santo Domingo conference. You
see, this was just part of a round-the-world trip to talk at various con-
ferences and seminars, trying to help improve dementia care.
Round the world in 80 days

It truly felt as if we had gone around the world in 80 days, like the old
movie! But rather than travelling by hot air balloon, we had flown on a
number of airlines in a special ticketing arrangement. Paul had
managed to organise a trip which included India, Israel, France,
London, South Africa, Brazil, Santo Domingo, Taiwan and Japan. It
had only taken just over 70 days, but it felt like I had been away for
ever!
It had all started in Barcelona in 2002, when quite a few people
from a number of ADI member countries expressed interest in my
giving a talk about an insider’s perspective of dementia during 2003,
timed to coincide with possible travel to the 19th ADI conference in
Santo Domingo.
Thankfully, before Paul sold his motorbike to pay for this huge
trip, we received generous support from two pharmaceutical compa-
nies, which market the anti-dementia drug Aricept which keeps me
well enough to continue advocacy.
Our first stop on the journey was Cochin, India, where we had a
delightful visit to the day care centre. One man there who now has
Alzheimer’s used to be a top bureaucrat. He was regularly given a file
for his complaints, which were duly attended to and returned to him
on file. He was still the ‘boss’ despite his dementia! The former station
master had his afternoon tea at a small table in a room very similar to
his workplace, so also was made to feel very comfortable. I was
impressed by this person-centred care.
My talk was on the major local holiday of Onam, yet there was a
large crowd in the heat of the afternoon, including an impressive array
of consultants who supported the local Alzheimer’s Association.
Amongst the audience were many nuns, carefully dressed in pale blue
and white habits, sitting demurely and quietly, very attentive to my
speech. At the end, the chairman stood up and gave a very emotional
response, quoting from Rudyard Kipling’s poem ‘If ’, using no notes,
just his excellent memory. There were quite a few moist eyes, including
mine, after he had finished speaking!
Next stop was Goa, India, and a welcome from the very capable
team at the local Alzheimer’s Association. They had organised for the
press to attend the meal at the venue where I was to give a short talk
that evening, and this resulted in front page media coverage, including
a cartoon! I was amazed, and could not imagine how dementia, or me,
could in any way feature on a cartoon.
The next day we were driven to the venue for my main talk, where I
unsteadily climbed quite a few flights of stone stairs with Paul’s help.
In the room, a computer was being set up for the PowerPoint presenta-
tion, and people gathered to take their seats. I was introduced to two
people with dementia and their families, and I was again impressed to
see the caring way in which they had been included.
The next stop on this trip was France, where I had been invited by a
charitable foundation to give a talk and meet with French Health
Ministry officials, to promote awareness of dementia and the need for
better care. I found that an important issue was the stigma surrounding
dementia, and in particular attached to the French word ‘demense’. An
example of this seemed to be the fact that a person with dementia from
DASNI had been invited to attend – all expenses paid – but his family
were reluctant for him to come.
In a short introduction in halting and very bad French, I men-
tioned the recent heat wave, of the hot summer of 2003, and the con-
sequent deaths. I raised the questions: how many of those who died
might have had undiagnosed dementia? How many of them might
have forgotten to drink enough water?
Paul talked with health officials about the fact that in many ways
Australia and France, like other Organisation for Economic Co-opera-
tion and Development (OECD) countries, are very similar, with an
aging population, and a time bomb ticking of a future dementia
epidemic. As the ‘baby boomers’ age, diseases that cause dementia will
become more common, and they will impact very greatly on an under
resourced health care system.
We travelled then under the Channel by train to London, and soon
seemed to reach Waterloo station. The ADI head office was just nearby,
and we trundled our baggage through the tunnels and along the street,
back to the small upstairs meeting room where we had met with ADI
only two years before. We had a cup of tea and a chat before facing the
London Underground to rest for a few days with my mother.
I really needed to ‘recharge my batteries’, to rest and recuperate, for
the next part of our trip. We were off to Israel, and I was scared,
anxious and apprehensive. Travel warnings had been issued by our
government and we had been advised to defer all non-essential travel.
But Paul felt it was important to take the message of dementia care to
our friends in Israel.
I gave a talk at the conference in Tel Aviv, which was attended by
almost twice as many people as had been expected. The audience was
talkative and active, people walking in and out, talking and moving
about, mobile phones ringing and doors banging. I found this all very
distracting, and the chairwoman asked that the doors be closed and
asked for quiet so that I could continue. I managed to get through my
talk, and my overheads behind me on the screen had been translated
into Hebrew. I went outside to rest, feeling so tired from the effort of
trying to focus with this background visual and aural distraction.
One highlight for me from the conference was talking in the sunny
courtyard during the break out time, to the person who had just given
a presentation on service dogs for Alzheimer’s patients. These dogs
will return you home when you get lost or when your care partner feels
you should return home, and will also recognise signs of distress and
activate an alarm button. I felt this was a wonderful idea, as companion
pets are such forgiving care partners, who do not mind you cannot
remember, or find your way, or even know their name!
As we travelled back in the bus from Tel Aviv to Jerusalem, a young
woman who had emigrated from the USA to Israel was chatting with
us. Just before she got off the bus at her stop, she asked if, later in the
week, I would be able to give the same talk at the dementia care centre
where she worked. The staff had been looking for a speaker to give
them a spiritual boost, as they were feeling depressed and very down-
hearted at the situation in Israel. I agreed, but felt exhausted at the
thought of another talk.
A few days later, we were driven across the picturesque streets of
the Jerusalem landscape, with its stone buildings and barren rocky
hills, to an area just outside of the ‘green line’. On our arrival at the
centre, I was led to a quiet room, with a soft calm feeling about it. Just
outside was a herb garden to sniff and flowers to see. This time of quiet
gave me a rest, to gather my energy for the talk.
In my talk I talked of ‘dancing with dementia’. This phrase I use to
describe how Paul and I are a care-partnership, adapting my care as I
journey into areas of different need. I referred to Psalm 30 from the
Bible: ‘You have changed my sadness into a joyful dance; you have
taken away my sorrow.’ The women reached into the pockets of their
long skirts to bring out their well-worn psalm books.
We shared the words of this psalm and of others, as I talked about
the role of my faith in overcoming the trials of dementia. The lady who
had invited me was delighted, and said it was just what they needed. I
was honoured that I, as a Christian, could give spiritual comfort to my
Jewish brothers and sisters.
From Israel we travelled to South Africa, where we were greatly
honoured to be introduced to a man who had been active in the
uprising. He took us around the main sights of Soweto, the birthplace
of this new nation. We then travelled several hours south to
Bloemfontein, where I gave a talk to the national conference, and
managed a few words in Afrikaans. My mother is from Belgium, so I
speak some Flemish and have a limited understanding of written Afri-
kaans. Our delightful hostess had helped me to find a poem by Ingrid
Jonker which was used by Nelson Mandela in his State of the Nation
23
Address. I selected an appropriate part, about a child being at all
meetings, looking through the windows, into mothers’ hearts, and
becoming a man, yet lacking a pass. I opened my talk with this extract
– of course with a very Flemish pronunciation!
I asked the audience to think of this child, this man, as the person
with dementia, the one who is often forgotten as a human being, who
is looking through the windows of our meetings about dementia, and
is often excluded. I spoke about how we are all part of a rich tapestry of
humanity, saying, ‘Truly we must include all people with dementia
when we say ‘ubuntu’ – we are together in our great humanity… Like
Mandela we people with dementia can transform a personal tragedy
into a triumph. We need no longer be the forgotten ones who have for-
gotten how to remember.’
As I sat down, the chairwoman was too overcome to speak at first,
and hugged me tightly as she gathered her composure. At this confer-
ence, I was particularly impressed by an African psychiatrist, who
spoke with passion and vision. The challenge seems to be to gain
information about dementia in the African population.
It was indeed proving to be a ‘whistle-stop’ tour, and from South
Africa we flew on to Brazil, where we were going to meet for the first
time another friend from DASNI, who is a supporter of people with
dementia, and runs a day care centre and a monthly carers support
group. We let her know that our ticketing arrangements took us
through Brazil, and she was so excited! She arranged a medical sympo-
sium in Belo Horizonte, and it was a full day of excellent presentations,
with my talk translated by her, page by page. All the attendees seemed
to be delighted with the outcome of this spontaneously arranged
event.
For Paul, this visit was extra special, as he had once lived for two
years in Brazil and was keen to show me Rio and Belo. So we managed
some brief sight-seeing in-between our talk commitments. All too
soon we were off once more in an airplane, this time up across the vast
continent of South America, and I was thrilled to see the huge Amazon
snaking below.
We arrived in the dark warmth of a Santo Domingo night, and I

was anxious about how we were going to get to the hotel, as this
would be the first place where we had no arrangement to be met by
friends in the dementia movement. But as we made our way out of the
inevitable passport queues, my name was called out and there was a
member of staff from the pharmaceutical company which had spon-
sored us, ready to take us to the hotel!
The ADI conference in Santo Domingo marked the end of the race
in my exhausted eyes, after this trip and all that had gone before. The
relay baton had reached the finish line, and people with dementia now
had a voice which would be listened to, in order to improve the way
people with dementia are included and supported in the global
dementia movement. I was astounded by what had happened since
DASNI’s modest start as the Coping With Personal Memory Loss
email group in 2000, and the speed with which an international
organisation such as ADI had responded to our advocacy.
But for me, there was still a little more of my own race to run. Our
next stop after Santo Domingo was Taiwan, where we flew in to a
memorable orange sunset. A member of staff from the company was
there again to greet us, and she and our hostess had made such won-
derful arrangements. We were shown into a suite in a top hotel, which
was to be a haven of rest and peace in our journey, on this frantic rush
around the world. I treasured this special time, and felt rested and at
ease.
I gave two talks, one to a large hall full of carers and the other to a
small meeting room of medical specialists. It was a busy three days, and
we ate some delicious Chinese food. Yet again the question of my diag-
nosis was raised. I still find it hard to comprehend why this should be
so. Why would I lie about this? Why would I not get this diagnosis
checked and re-checked to be sure?
From Taiwan we flew across to Japan, and as we taxied in I saw a
camera crew out on the tarmac. I said, ‘Paul, I am sure that crew is
filming our landing, and will be there when we get out of the queues.’
He was not convinced, and said surely it would be for something else.
But as the doors to the arrival hall opened, there was the camera crew,
alongside our dear friends who we had met just earlier in the year.
You see, I had met Noriko Ishibashi at the DASNI booth in
Christchurch and she had videoed my talk, and bought my book
despite not understanding a word of English. After her friend trans-
lated this material, she was so excited and set about getting in touch.
Noriko has been inspiring, and energetic in her commitment to
working to change the care environment for people with dementia.
She had brought a group of friends to visit us earlier in the year,
and it had been a very special time, captured in an appendix to the
Japanese version of my book, which had just been released as we
touched down in Japan. Across culture and language, Noriko and I had
been able to truly communicate at the deep level of spirit to spirit, and
to share our thinking on how best to improve the care environment for
people with dementia. And it was Noriko who had been instrumental
in our visit for these ten days in Japan.
We boarded the bullet train, and sped smoothly above the city and
around the bay, to our hotel and the venue for my first talk. From our
very first moment in Japan, we were cared for by an attendant, there
were quiet rooms at each venue, and each hotel was wonderful. I felt
very special, treasured, taken care of, so that I could really relax and
rest. Indeed my time in Japan was one of the most peaceful and enjoy-
able trips I have ever experienced, meeting such dear new and old
friends who took such good care of me!
I was overcome by amazing generosity and attention to detail, and
felt welcomed with enthusiasm and a shared sense of love for people
with dementia. There were lovely flowers, thoughtful gifts, claps and
smiles, and rapt silence and earnest questions for each talk. I felt very
honoured and privileged to be given this opportunity to share.
I recall clearly a dinner after my talk in Okayama, when a wonder-
ful young man who was devoting his life to care of people with
dementia, said to me ‘I used to think of people with dementia as being
far away. But now, after hearing your talk, I feel they are close by and
that I will be able to reach them.’ This was such insightful thinking,
and I was so impressed by this young man, who was young enough to
be my son, who was able to express the centre of the message, the key
to caring for people with dementia.
The highlight of the trip was in Matsue, where after my talk I was
presented with a wedding kimono! I put it on and stood hand in hand
on the podium with Paul. He was wearing a lovely corsage of flowers
on his jacket that he had been given, and we stood smiling as the
audience clapped and clapped. It was like getting married all over
again! And the highlight of our trip was that night’s stay in a Japanese
inn in Matsue, overlooking the lake. I had stayed once in such an inn
when at work, but now I could share this very special time with Paul.
Tranquility in Japan
We then travelled to Kyoto, the venue for the ADI conference in 2004,
and saw the beautiful conference hall high above the city with its
temples and castles, alleyways and cobblestones. Our interview for
NHK TV in a Kyoto temple was such an honour. It filled us with the
sense of mystery and history, as we walked around the peaceful
autumn colours of the gardens, and contemplated the majesty of
nature in each leaf and tree.
A monk met with us for Japanese tea, and he talked with us of the
importance of nature, and how the bud represents the whole potential
of life, and how the simplicity of a carefully arranged garden reflects
the divine. I shared how as a person with dementia, I live in this ‘now’,
in the beauty of this natural environment, focused on the beauty of

each flower and leaf. I talked of how as a Christian I focus on the joy of
each day, of each moment of my life in God’s beautiful creation. It was
a very special time of sharing across faiths and cultures, and between a
person with dementia and a wise master. We connected spirit to spirit
and were able to exchange a deep sense of meaning.
At the nearby headquarters of the Japanese Alzheimer’s Society, a
large group of people were gathered around the huge conference table
as we walked in, with our dear attendant close by. She was able to help
us share my thoughts on what it really means to have dementia, and
what remains as the core of the spirit within. We were greatly
honoured to hear from the President and the Secretary-General of the
Society. They were the driving force for the forthcoming ADI confer-
ence in Kyoto, and had clearly done an amazing job of organising this
event.
Wedding kimono
It was very special to know that the Secretary-General, a medical spe-

cialist, had shared a dinner table with many of us in DASNI at
Christchurch in 2001. Now, so much had happened since then, and
along with his colleagues in the dementia movement, he had been an
important part of this move for change.
When we finally arrived home we heard that the national broad-
caster NHK had produced two television programmes about our trip,
and as we watched them on our video, it helped me to recall memories
of this special time, our dear friends, and the beauty of Japan. I could in
some way reconnect with the serenity that I had felt during this trip,
where I was so well taken care of, and was able to share a real sense
of meaning, intimacy and relationship across culture and despite
language.
I really needed to rediscover this sense of peace that I had discov-
ered during my time in Japan. I had felt a tranquillity that was like an
emotionally serene island amidst the stress and anxiety that I was
experiencing. Not only had we just got back after two and a half
months of travelling in so many different countries, but we came back
to settle into a new house!
I wouldn’t recommend that you move…

Yes, we had ignored the medical advice and moved house, not once but
twice in two years. I was feeling very agitated, very anxious and very
stressed. I now realise why that advice was so wise. I need routine. I
need the reassurance of knowing where I am, where things are, even if
it is not easy to find them.
Our first move maybe was the result of my impulsiveness, as I was
losing more of the control available in my brain. I simply had enough
of the cold in Canberra, of the stress of giving talks and of media
interest. This was in 2001, that frantic year of moving from local to
global action. On our way to Montana, we visited my cousin on Bribie
Island just north of Brisbane in mid winter. The Island was sunny and
warm, and the sun glimmered over the peaceful water of Pumicestone
passage. It seemed like paradise!
We visited again on our way to Christchurch, and by then I was

determined to move. I insisted, nagged, argued, seeking a way out
from the stress. I thought that by moving I could escape this stress. I
did ask, though, our church minister, Neil, and my spiritual advisor,
Liz MacKinlay, to come and pray with us about this decision. They
both found time on a busy Christmas Eve in 2001, to sit in our kitchen
and put my crazy idea to God. Just a few weeks later, another minister
friend, Bill, was visiting. He came downstairs one morning, and said ‘I
have a verse for you, from the Bible, which says “You have gone around
the mountains long enough, now is the time to head north”.’ Of
course, Canberra is near the mountains, and Bribie Island was a great
distance to the north.
Moving to Bribie Island in March 2003 was really counter-intu-
itive. It all seemed so fast, so amazing, so totally what a person with
dementia could not do. When we visited my neurologist and told him
what we were planning he said, ‘Well, I wouldn’t recommend that you
move, but given that you have seemed to survive a trip around the
world, maybe you will be able to cope with this.’ Not exactly a ringing
endorsement of our plans, but at least he was not going to stop me fol-
lowing my impulses.
And certainly our first year on the Island was less stressful, and
there were fewer demands on my time. But I found it so hard to settle,
to remember the new faces I was meeting each day, and I was so dis-
connected with all that had been familiar in Canberra. The landscape
was so different, the air and light new and strange, and we were now
1500 km away from all the familiar faces of my friends and family.
I was struggling, and found it hard to cope with the stress of events
in early 2003. There were terrible bush fires in Canberra, affecting
each one of my daughters who lived around the area where we had
once lived. It had been devastated by fire, 500 homes destroyed and
countless lives traumatised. By May 2003 my middle daughter,
Rhiannon, had moved back home and there was more change in
my life.
I wrote to my friends in DASNI: ‘I am struggling a lot now. My
book was written in 96 and 97, and now I can’t even start the second
one I hoped to write. My thoughts are jumbled, and my apathy…just

makes each day seem a muddle.’
The muddle became even more frantic and distressing, when we
decided to move again, to an acreage nearby, so that we could share the
adventure of developing a run-down, swampy piece of overgrown
land into an exciting horse property. Again I think it was my impul-
siveness that drove us, my temporary excitement, my moments of lucid
thought, and my determination, that swept us along.
By early August 2003 we had moved, and plans were made for the
fencing, clearing, re-seeding, drainage, stables and so on. Just three
short weeks later we were off overseas for our long trip. We had not
unpacked into our new house, and I had no home that I really felt was
my own.
So when we arrived home after Japan in late 2003, I felt homeless. I
did not know where anything was, and could not find a routine for
dressing, showering or going to bed. Everything was strange and
unusual. I stumbled and fell several times, and had a very sore hip for
several months. My body was exhausted and my mind stretched
beyond its meagre capacity.
It took me almost six months to start to recover some energy, and
some feeling of a centering in my life again. And of course, I needed to
find the energy to get to the computer and write this book, all about
having dementia, living this life in the slow lane, and making a
long journey of diagnosis and treatment, and of self discovery and
reflection.
3
Let’s Talk About

Having Dementia
The medical journey

Diagnosis with Alzheimer’s Disease
M y journey into finding out all about dementia, from an insider’s

perspective, started with feelings of stress and of exhaustion, as
well as the occurrence of frequent migraines.
The doctor finally sent me for a routine CT (computer-assisted
tomography) scan in April 1995 to check that there was no brain
tumour or lesion causing my migraines. The report said: ‘The ventricu-
lar system, sulci and CSF [cerebrospinal fluid] spaces are more promi-
nent than expected for the patient’s age, indicating a degree of gener-
alised cerebral and cerebellar atrophy.’
I talk in my first book of how I then had an MRI [magnetic reso-
nance imaging] scan, which noted ‘generalised enlargement of the
ventricular system and subarachnoid spaces indicating generalised
cerebral atrophy’. The first neurologist that I saw said the scan looked
as if I had probable Alzheimer’s Disease and that I should retire from
work immediately. This was an enormous shock for me, so I saw
89
another neurologist in July 1995, who carried out more scans, an elec-
troencephalogram, and blood tests, including for AIDS (autoimmune
deficiency syndrome). I rested at home to recover from the migraines,
from my stress of trying to cope at work, and from the added trauma of
the possible diagnosis of Alzheimer’s Disease.
By August 1995 I was well enough to do a complex battery of
exhausting psychometric tests, and the report noted ‘difficulties in
attention/concentration, speed of information processing, and appli-
cation of strategies to more complex and novel verbal and visual
material, [which are] consistent with frontal lobe damage’. The report
noted the generalised cerebral atrophy visible on the scans, and said ‘a
provisional diagnosis of early stage of Alzheimer’s Disease seems the
most likely’.
The neurologist carefully reviewed this report, and ordered further
tests and scans to ensure that there was no other reason for the brain
damage and resulting loss of function. These tests included a lumbar
puncture to check for signs of infection, and a small bowel biopsy to
check for Whipple’s disease.
He then informed my doctor that he had ‘not identified a treatable
alternative diagnosis to early Alzheimer’s Disease’, and recommended
that I start taking the anti-dementia drug, Tacrine, ‘to try to preserve
memory function’. He strongly recommended that I retire from work
as soon as possible. So in October 1995 I started taking Cognex
(Tacrine), and started to arrange for medical retirement from work.
Over the next few months, the fog started to lift from my brain, and I
managed to start to deal with the trauma of my diagnosis. I went back
for regular check-ups from 1995 to 1998 while on Cognex, which
confirmed continuing brain damage and yet a slowing functional
decline, perhaps due to the effect of this anti-dementia drug. I settled
into a new life with Alzheimer’s and wrote my first book, working
through the emotional and spiritual journey that I was travelling.
LET’S TALK ABOUT HAVING DEMENTIA 91
Re-diagnosis with fronto-temporal dementia

In 1998, as discussed in the first chapter, I had further scans. The CT
scan reported ‘brain atrophy affecting mainly the frontal lobes’. I also
had a PET (positron emission tomography) scan, which reported:
There has been a definite but slight progression in the degree
of cerebral glucose hypometabolism and also the degree of
cerebral atrophy. The atrophy is most marked in the mid to
superior frontal lobes and the interhemispheric fissure is
much wider than 3 years ago. It is associated with more
marked reduction in glucose metabolism in the mesial frontal
cortex, particularly in the region of the cingulate gyrus…
There is also hypometabolism of both temporal lobes with
the suggestion of temporal lobe atrophy bilaterally. All the
changes are more marked on the right. There is mild but
definite progression since the study performed three years
ago. The findings would be consistent with a fronto-temporal
dementia rather than the pattern seen with dementia of the
Alzheimer-type.
It’s important to recall that PET scans look at function, which was
increased due to my anti-dementia drug. I have seen scans of Alzhei-
mer’s brains with and without Tacrine after ten months, and the differ-
ence is very marked. Imagine what little function I might have shown
on my PET scan, if I was not taking Tacrine. By 1998 I had been on
Tacrine for three years!
I had further psychometric tests, which confirmed this finding and
led to my re-diagnosis with fronto-temporal dementia, rather than a
dementia of the Alzheimer type. In the three years, it was clear that the
damage was more severe in the frontal lobes. The neurologist told me
that some fronto-temporal dementias are Alzheimer’s like, and stabi-
lise for many years. This was very encouraging.
But this re-diagnosis meant little change in terms of treatment (for
example, I was told to continue taking the anti-dementia drug), as
fronto-temporal dementia has many of the same symptoms as Alzhei-
mer’s and other dementias. However, it is less characterised by memory
problems, and more by initial personality changes and problems with

speech and judgement. Indeed, fronto-temporal dementia is probably
still very much under-diagnosed.
Mind you, remember how unique we each are – so different in the
way we use our brain. So even two cases of Alzheimer’s are not the
same, let alone the other types of dementia. There may be considerable
misdiagnosis of Alzheimer’s Disease, particularly in those under 65
years of age, when checked out at autopsy. This diagnostic error is par-
ticularly true when simple behavioural tests are used and not followed
up by scans and blood tests, as well as more sophisticated psychometric
tests.
At the time of the reassessment in 1998, the neurologist said he
thought the brain deterioration was now ‘glacially slow’, and that I
had a lot longer to live than the five to ten years previously thought.
He was not following statistics, which would estimate that I would
deteriorate just as fast, if not faster, with this type of dementia. He was
treating me as a unique individual.
Following up each year…

By February 2000, the neurologist wrote:
[Christine is] being treated for a chronic fronto-temporal
dementia. This is a slowly progressive cerebral degenerative
disorder which has a slow rate of progression. She has signifi-
cant difficulty with memory and with some executive func-
tions, sufficient for her to require increasing levels of support-
ive care. Medication with Tacrine has a slight long-term bene-
ficial effect but no other active treatment is available.
In May 2001 it was time for a follow up MRI scan, which reported:
Cerebral atrophy is present and it is more focal in the frontal
and temporal lobes with prominence of the silvian fissures.
There is, however, also a degree of central atrophy and
atrophy involving the occipital lobes. Cerebellar atrophy is
also present… Though the fronto-temporal atrophy is cer-

tainly more well established than atrophy elsewhere, it is
present elsewhere including a degree of central atrophy.
The neurologist reassured me that although the pattern of fronto-
temporal dementia was clearly evident, it appeared to be progressing
slowly.
In early 2002, further psychometric tests showed selective deficits
in memory, spatial location, executive function and speed of informa-
tion processing. This simply supported the decline being seen in the
brain scans, and the diagnosis of fronto-temporal dementia.
By November 2003, the MRI showed that
There is prominence of the subarachnoid space over the
superior cerebral surface, more prominent in the frontal that
the parietal region. This extends into the para falcine region.
The subarachnoid space is also widened in the middle cranial
fossa of the anterior aspect of the temporal lobe… There are
three small foci of high signal change in the periventricular
white matter in the parietal lobes. This may reflect mild small
vessel ischaemic change.
The radio nuclide brain perfusion study also showed further func-
tional changes in the fronto-parietal cortex, compared to previous
studies. So the damage to my brain still continues, slowly but surely,
despite my apparent level of function.
What does all this mean? Well, basically that I have much more
wasting away of the brain than expected for my age, and that this
wasting away is steadily getting worse. Each year, more and more of
my brain is disappearing. The bits that are going are in the front, and
in-between the two big halves (like those of a walnut) of the brain.
When I give talks I usually put a scan up on the overhead, because
often people just can’t believe there is anything at all wrong with me.
The pictures clearly show atrophy (wasting away of the brain) in the
frontal and temporal lobes, which is apparently (according to my neu-
rologist) even more marked in the computer read-outs than the scans.
Side view, Nov 2003

Christine’s MRI scan, Nov 2003
Sometimes I also show another person’s scan, with no brain damage,
and the ‘pictures are worth a thousand words’! Usually there’s a sort of
hushed silence, as people who know what brains should look like try
to take in the fact that here, right in front of them, is someone who
should not be able to do what she is doing – that is, give a talk!
According to the doctors, my scans are like those of someone in the
moderate stage of fronto-temporal dementia, ready to be admitted to a
nursing home. It’s like a 115-year-old brain trying to power a
55-year-old! But my functioning is as if I am only in the early stages.
Why is that? Why can I function with so little brain? Why can I still
speak, dress myself, write this book, read, study counselling, and
so on?
What does this mean to me? Well, that a normal person exists
behind the scans and diagnoses, and this particular person who has a
dementia has no intention of going quietly or declining as expected by
much of the medical profession – but fortunately not by my neurolo-
gist, who is happy to talk to me each year, speaking to me as if I still
have a brain and deserve to be treated as a normal intellectually func-
tioning human being.
He gives me hope by not assuming anything, by not giving me any
projections of decline, and by basically saying that I am and will be as
good as I feel and that there is still much to learn from patients such as
myself and everyone with dementia.
His explanation of why I seem to function beyond the expectations
from my scans is that I had a much higher level of pre-existing capabil-
ity on which I seem to be drawing now. He says ‘She is managing as
well as she is partly because of the unusual very slow progression of

her illness and because of the excellent support of her husband.’
Paul and I are dancing with dementia as best we can, but he was
not there at the beginning of this journey. He joined it only after the
first three years of struggle.
A journey through trauma towards hope

The struggle began with the testing for the initial diagnosis. It was an
agony of waiting, wondering and desperately hoping that whatever is
wrong can be treated and life can go back to normal. My life changed
dramatically when I faced the shock of diagnosis. It feels like a curse
when the doctor says, ‘You have dementia. There is no cure.’ It’s like
the pointing-bone of a traditional curse, and what is said often leads to
a terrible depression. For me, I certainly withdrew for a year or so,
writing my first book, processing my thoughts and feelings.
Many of us have heard at diagnosis what we now refer to as the
standard dementia script: ‘You have about five years till you become
demented, then you’ll probably die about three years later.’ No wonder
we often suffer depression and despair! Dementia and Alzheimer’s are
both words that create fear and dread. Many of us wish we had cancer.
At least then usually there is talk of treatment, of chemotherapy, of
possible remission. There is none of that with a diagnosis of dementia.
What do you tell us at this critical time of diagnosis? ‘It’s best not to
let her know.’ ‘He doesn’t really understand.’ ‘Go home and enjoy the
rest of your life.’ The assumption is that nothing can be done, so why
bother? But we want to get our life in order, to think about family rela-
tionships, our legal and financial affairs. Give us information about
dementia. Don’t assume we lack insight, for we might simply be in
denial – a perfectly normal response to the shock of diagnosis.
One really frightening thing for you when you are diagnosed with
a dementia is that no one knows how fast you might deteriorate – it is
hard to get across how that feels, each day you wonder what faculty
might be lost. You don’t know if you’ll be able to read and write, or add
up for much longer. Setting up an enduring power of attorney might
reassure you about your financial affairs, but it reinforces this fear of
losing ‘the three Rs’ (Reading, wRiting and aRithmetic) and of how
shameful that will be. And what about the loss of giving up going out
to restaurants, concerts, the cinema, the club, golf or church – largely
through shame and lack of understanding?
For the first two years after diagnosis, I tried desperately to believe
that the damage had always been there. The brain damage is stark.
Maybe I had been born with that amount of brain missing and coped
very well despite it? Or maybe what I had could be cured? But now I
realise I do have a progressive dementia, and importantly that there is
treatment and hope. I have learned to live positively with dementia,
and my neurologist has done a great deal to help me by treating me as
an individual who can still achieve things in life despite dementia.
For example, he wrote in late 2003:
There has been a gradual progression of her cognitive
disorder, but she has managed to fit in a sponsored lecture
tour on the problems of being affected by dementia… She
has the most interesting combination of excellent insight and
reasoning skill despite declining short term memory and
language abilities… It is fairly clear that Christine’s dement-
ing illness will continue to evolve at the same rate as it has in
the last eight years, so that there is no need to consider any
major changes in her life activities.
My neurologist is a continuing source of encouragement to me, and
treats me as a person first and foremost, not a disease. He gives me
hope that I can function to my full potential despite my decline.
But my potential is not what it was before I became ill. My friend
Margaret, who used to work with me, was being interviewed by Yuji
Kawamura of NHK, the Japanese national TV network, and said that I
‘was just so quick to grasp anything that was put before her. Any
problem was not a problem once it got to Christine, there were always
solutions to any problems that were presented to her.’ I am no longer
that ‘brilliant’ person she describes, but there is more to me that I am
discovering as I journey inward with dementia. Again, as Margaret
said ‘having this dementia brought out all the compassionate side of
her…she became a much softer personality.’
My functioning seems almost normal because of my anti-dementia
drugs, without which I could not travel, talk or even shower or dress.
But not only these help, but also my previous level of education and
ability. The neurologist says it is like I used to juggle maybe as many as
six balls whereas ordinary people might juggle three at most. I might
have dropped three balls now at this stage in my decline, but I still
juggle almost as many balls as the ordinary person I meet each day. I
treasure some delightful juggling balls that were given to me in Japan,
after having mentioned this analogy in one of my talks there. They
remind me of how I once was, and how I am now, and inspire me to
keep juggling as best I can!
Hopefully I have enough extra time, and insight, to share with you
what it feels like to struggle with these diseases that cause dementia.
What it feels like to live with dementia

There is such a terrible stigma attached to this disease that no one
wants to talk about it or admit to a diagnosis, even seek one. So we
struggle to remain ‘normal’ and pretend we are feeling fine. But we are
not – it feels very different now to how we once felt. We know what it
felt like to be normal, and that is not what it feels like now. And as the
disease progresses, it becomes more difficult to describe how we feel,
to get our thoughts in order and actually get the words out so you can
understand us.
The first signs of dementia are very gradual changes in ourselves,
so that we hardly notice it. Our family and friends might think ‘we are
not ourselves’, and we might think we are just stressed. But it is the
beginning of a long slow journey of change.
I felt foggy in my head and became more readily confused. I was
very tired, and just wanted to come home from work and sleep. But I
couldn’t give up and go to bed. I was a single mother with three girls to
look after at home, as well as up to 30 staff and a budget of several
million Australian dollars to worry about at work.
I was so stressed out by ordinary things and was getting terrible

migraines every week. I would forget things in mid sentence, get
confused about finding my way to work, and found it increasingly dif-
ficult to make decisions. Everything was an effort and something felt
very wrong!
The psychometric tests were exhausting and I was puzzled as to
why some things had seemed so hard and yet others quite easy. I had
great difficulty remembering numbers, making pictures into a story,
working out what was so special about arrangements of blocks set out
before me, and making my way through a maze. My mind was often
blank when trying to recall the various shopping lists and stories.
We face a daily struggle to cope. Each day is filled with a myriad of
activities which become more and more difficult as time goes by. Each
task seems bigger and more overwhelming, so that we lose the inter-
connectedness of our thread of life. Life has become a fragmented
kaleidoscope of problems as we juggle an enormous pile of difficult
tasks.
We feel as if we are hanging onto a high cliff, above a lurking black
hole. Daily tasks are complex. Nothing is automatic anymore. Every-
thing is as if we are first learning. Cooking burns, ironing is forgotten,
washing is no longer sorted, and driving becomes scary. You tell us that
we have asked you that question before, but we have no recollection. It
is just a blank for the past, and this feels strange and scary, and yet you
are frustrated with us.
If we had an arm or leg missing, you would congratulate us on our
efforts. But you cannot see how much of our brain is missing and how
hard it is to cope, so you don’t understand our struggles. For me it’s like
struggling to live in a fog, especially without Aricept. Everything is
confusing, and the struggle is exhausting to the point of extreme tired-
ness.
We ebb and flow like a parallel universe of untreated and treated
dementia. We have our good days and our bad days. As my friend
Morris from DASNI said, there are ‘windows of clarity’ which we must
take advantage of. But unpredictably we can feel exhausted, confused,
muddle-headed. Life seems too difficult and we retreat.
Laura, the pioneer of DASNI, captured our feelings so poignantly

in an email she wrote in early 2001, as part of a study into early onset
dementia:
Most of the time I live in the space I can see and the time called
‘now’… It is almost a ‘virtual world’… I move…and a new
space opens to view…like a new room in a computer game…
There is a type of cheese, I forget its name, that when thinly
sliced is very lacey… my life feels like that – so full of spaces
that it barely holds together…or like a tree in a gusty
wind…branches touch and connections are made but fleet-
ingly…made and unmade, little sense of cohesiveness…even
my rooted-ness to my place in space feels tenuous…as if I
might be torn loose, uprooted, blown away.24
You see, it is far more than simply memory loss. We are confused, we
have problems with our sight, with our balance, with numbers and
with direction. It is a real disease, not a normal part of aging. We have
no sense of time passing, so we live in the present reality, with no past
and no future. We put all of our energy into now, not then or later.
Sometimes this causes a lot of anxiety because we worry about the past
or the future because we cannot ‘feel’ that it exists.
But this fact that we live in the present, with a depth of spirit and
some tangled emotions, rather than cognition, means you can connect
with us at a deep level through touch, eye contact, smiles.
Your talk has helped me so much to understand what my
mother is going through. She could never really tell me, and I
always feel so helpless. Now I know much more about how it
must feel for her. Thank you for giving so much of yourself to
us this morning.
THE LADY SPOKE to me, tears welling in her eyes, expressing the
emotion, the pain, of the years of not knowing, and now of the awak-
ening, the feeling that she at last could have some more insight into her
mother’s view of the world, what her day was like, what her journey
had been like for her as she declined into Alzheimer’s Disease.
I had just finished yet another talk, organised by my local Alzhei-
mer’s Association, for family and professional carers. I felt wrung out,
after a 45-minute talk followed by questions, but the honesty of this
lady’s openness, her struggles expressed wordlessly through her tears,
meant it was all worthwhile.
I have given many talks over the past few years, in Australia and
overseas, to professional workers and family care partners, to dementia
training courses, and at conferences and each time the response is the
same. The talk – even though to me it sounds to be just the same thing,
modified a little, over and over again – has been a real insight into the
world of the person with dementia, into our struggles each day to cope
as our brain disappears.
At one of my early talks, an exciting thing happened. A fellow
stood up in the audience and motioned to his wife to speak out for
him. She said, ‘We came to your talk last year, and we’re here again. He
says that he found what you said really described how he felt, and your
suggestion of ear plugs for noisy places has really helped.’
This was the first direct confirmation I had that what I was saying,
others felt too. That was until I joined my email support group, and
found that 50–60 of us around the world felt that way too. As Jan said
in one of her messages ‘You continue to astound me. I am in awe of
your ability to organize and communicate so clearly “our” needs. I have
printed this out and shared it with my husband.’ And Mary Lockhart,
likewise, said ‘Just the way I feel also. I am so glad to have you on our
25
team.’
But I feel as if time is running out. I visited Canberra recently,
where we had lived until a few years ago, and it was a very special time
of reflection for me. I felt very relaxed and happy, and found that the
beauty of the natural environment, the plants and the landscape forms,
were strong visual memories which somehow restored my spirit. The
beautiful gum trees, the possums, the parrots and the crisp cool air gave
me a very spiritual time, and I felt a great peace filling me. Yuji, from
NHK, was talking with me one morning about all these feelings.
I struggled to talk, as tears welled up in my eyes, because beneath

this sense of peace was the awful feeling that I don’t have much time
left. It is such a struggle to get my thoughts and ideas out. Yet I feel like
a sputtering candle, as it dies down to the last few centimetres of wax,
the flame flickers just a bit more brightly before it finally disappears.
I want so desperately to get all my ideas across, and I am doing my
best with this book, my last effort to put them all down on paper. I am
anxious as I seem to be less and less able to capture and communicate
these thoughts. There is a stream of ideas coming through my brain,
yet they don’t remain there. They are fleeting glimpses of insight, there
one moment, totally gone the next. Unless I speak them out, or write
them down, immediately, they are lost forever.
I feel that God is giving me all these ideas, but maybe I didn’t write
them down fast enough, maybe I have waited too long to write them
all down. But it’s a horrible feeling to be like a dying candle, burning
bright at times, but running out of time, because I feel there is much to
do and I have responsibilities for my daughters.
I try in this book to share how it feels, so that you can help us as we
journey further into our decline with these diseases that cause
dementia. I have tried to structure this section so that it more or less
follows our journey of decline, both from our perspective, and from
the point of view of what you can do to help us.
I am doing all I can to communicate what it is like to have
dementia, but it is becoming increasingly difficult. People often say,
‘Oh, you’re doing really well! You look so well.’ But I am very scram-
bled in my head.
Each day, life is such a struggle!

I described my feelings to a reporter recently:
I am more stretched out somehow, more linear, more
step-by-step in my thoughts. I have lost that vibrancy, the
buzz of interconnectedness, the excitement and focus I once
had. I have lost the passion, the drive that once characterized
me. I’m like a slow-motion version of my old self – not physi-

cally, but mentally.26
I’m like the swan, gliding above, paddling frantically beneath. My
functioning seems OK at the surface, but just below, there are my legs
paddling frantically to keep me afloat. And it feels as if I am paddling
faster and faster each day. It seems as if I’m going to sink soon, because
the struggle is getting to the point where I feel too exhausted to keep
going like this.
When I talk to the neurologist and tell him what I am doing, he
sees the swan, and yet underneath, when he examines the tests and
scans, he can see how fast my legs are going. I can still swim a bit and
put on a good show, so that you don’t notice much is wrong. Nobody
knows, except me and my poor damaged brain, how bad it is. It would
be a lot easier just to give up, because it is a struggle everyday.
Effort and exhaustion…

These characterise our day. It tires you out just pottering about the
house, making a huge effort to remember what today is, and what is
happening today, and what you plan to do today. No one really under-
stands how hard it is to live life like this, so everyone seems to trivialise
how we feel, patronise us, and make out they feel the same way. But we
know that’s not true, because we get exhausted by just the very simple
things each day. And we also know what it felt like to be normal, to
have ‘normal’ difficulties, which people claim are just like ours.
I am no longer a ‘can do’ person. Often I just can’t do something –
it is all becoming so hard to struggle to cope each day with this damage
in my brain. The complexity of so many things is a source of anguish.
Just getting up, how to make a cup of tea, how to go and have the
shower, where are my clothes and what shall I wear. I can’t decide what
to wear. Many decisions are simply so complex and I can’t remember
what has been said or offered so can’t decide. It is much easier to ‘go
with the flow’.
Cooking is so complex and almost beyond me now. I have to line
things up along the counter in order of the recipe, then use them, then
put them back so I do not use them twice, and have to write down each
step of the timing. I become exhausted, taking all day to do this,
making notes, making sure everything is there, planning, laying the
table, then trying so hard to make sure I remember to serve each part of
the meal. Washing, sorting, deciding – life is full of struggles and com-
plexities.
I suppose the anguish is because everybody doesn’t seem to know
how difficult it really is, that every moment of the day is a conscious
effort to do something, whatever it is. What is normal in this abnormal
disease? We can be tempted to maintain a cheerful facade, and deny
anything is wrong. You may either go along with this and deny
dementia, or assume we lack insight and take over our lives.
We cannot win. If we pretend at normalcy, increasing energy is
required to maintain the self, so less is available for you, and for coping
with stress. We may show a catastrophic reaction to what may seem to
you to be a simple challenge.
If you take over our lives, then it is so easy for us to withdraw into
helplessness. Life is so hard anyway, and you can make it so much
easier for us. But in so doing, because we need constant repeating of
actions and thoughts to keep remembering, we will lose functions
daily. It would of course be easier to give up and withdraw, and be
helped in every way. I wouldn’t have to struggle. But then I fear I
would lose so much function, as each day I have to try harder to
remember what skills I still have.
Even walking and seeing are hard…

Stumbling, wobbling and spilling are features of daily life. I find I
cannot walk along unfamiliar ground without looking down at my
feet, and going up or down stairs requires careful attention to each step
and each action. My vision and the signals that my eyes send to my
brain to interpret are slow. In turn, the messages that my brain sends to
my body to respond to what the eyes see are also slow.
The result is that the world feels like a wobbly place, and it is hard
to know where each part of me is in space. My environment around me
swims in and out of focus, as my head moves and my body walks. And
my body is slow to react to the changing environment. I had some bad
falls a few months ago, walking in the paddocks, and my friends in
DASNI often talk of the falls they have had. Now Paul holds my hand
to steady me.
When I am holding a glass of liquid, it is a huge effort to try to keep
it from spilling. I have to look at the glass, look at my body, take care of
how my body is placed in space – there are innumerable actions and
reactions in this seemingly simple task. For me, carrying a drink has
become a major challenge. Where is each part of me in space? Where is
that glass and why does it slosh over unless I stare at it? Why does it
bang into objects suddenly in its path when I lift it across the table?
How come when I reach out, I knock over things and make a big stain?
It’s like being blindfolded, looking through a tunnel. My periph-
eral vision seems to be more limited and I startle at or keep getting dis-
tracted by apparent movement around me. It is as if I have blinkers on.
If I walk past a mirror, I can be startled by the strange person in the
room with me!
I often knock things over in the kitchen or bathroom. I misjudge
distance and bump into things. Patterns can confuse me, so I may
stumble if walking across a smooth yet patterned floor. It just seems as
if all I can see is in front of me, and someone has blindfolded me so I
cannot see what is alongside me or around me.
Very slow reaction time

The world goes too fast and I am too slow. As a passenger I am a
driver’s worst nightmare, as I assume you have my slow reaction times
and get very stressed out at the speed you are going, how close you are
to the car in front and how quickly things are happening around us. So
I startle, shriek, tense up, make comments! Paul’s middle name is
patience when it comes to driving me anywhere! And I get exhausted
by city traffic, so much so that we carry an airline mask to cover my
eyes. This helps a great deal, especially at night, when all the lights and
movement are much too fast for me.
If you still drive when you have dementia, you wonder how long
you will retain this independence, and are fearful of a minor prang as
this will mean everyone will assume it was because of your dementia.
Giving up your licence is a major trauma for the person with dementia
and family. I only drive in emergencies now, and am very anxious
when I am just going a few streets from our house in the quiet of our
rural district. I feel I really cannot react fast enough to anything unex-
pected, and find it very hard to focus and to concentrate on the road
ahead, as well as remember all the pedals and levers and dials and
lights, which way do they go, what do they do, what must I do next.
Unreliable memory
Memory comes and goes, so that there are glimpses of past events, or
future tasks I wish to do. But I can’t find the memories when I want to,
they only appear unpredictably, and I rush to note them down or to tell
Paul so he can remember for me. It feels as if I will forget everything
that is not written down.
The black hole of life unremembered…

I had once made a long list of things I wanted to remember to do, and
was looking for it one day. Paul said he didn’t know it was so impor-
tant, and just thought it was a piece of paper and threw it away. I was so
upset, so distressed. The horror of losing that list hit me – it felt as if I
had no future. A black hole opened up behind me, and in front of me.
I screamed and shouted ‘I don’t know what I’m doing, this is
terrible.’ It was a real calamity, a crisis. It felt as if my life had been
thrown away! Paul realised that there was no way I would calm down,
that I was really suffering a catastrophic stress reaction. So he thought
about where the list might be, and ended up going through the
garbage bin, in the road, because it was garbage night. He emptied all
the garbage, and found it.
I was very, very happy. So that’s when we started to put a ‘to do list’
into the computer and kept on updating it. Now it is just a few short
notes in the diary. For everyone else, this is just a list, but for me, this is
my life. This is the only way that there is organisation in my life. Oth-
erwise it’s just a complete mess, because inside my head is a complete
mess. And every now and then a thought comes in, and I think, ohhh, I
must write it down. That thought won’t pop into my head again on
any sort of reliable basis, it is like a spinning wheel of words and
phrases, randomly coming to rest.
Intermittent reception and fog…

The unreliability of my memory is as if the printer ink is running low
and it sometimes works and sometimes doesn’t. Some days I can
remember this morning, but on other days I can’t. It is such a hit and
miss approach to a life gone by. Your memory is erratic. Sometimes it
feels as if a black curtain has fallen over what has just gone by. You are
in a continual present, but through that curtain is a vivid past that
existed some years ago. Yesterday or today, last week or the week
before, are a blank. Just writing in a diary might be a help, but then we
have to remember to find the diary, and to look at the right page!
It feels as if there is cotton wool in my head, a sort of fog over my
thoughts and feelings. This fog means it is hard to focus, to pay atten-
tion, and to keep up with what is going on around me. It leads to inter-
mittent reception of life as it passes by.
I do not have enough energy to cope in the fog to find thoughts
and get an idea or to work out what you are saying. Study, prayer,
ordered thought and quiet reflection are no longer are possible. It is
just a muddle of random thoughts. I go with the flow and make the
most of the random bursts of energy and lucidity.
Conversations are full of questions and are a source of stress, as I
am much slower and cannot respond quickly. I have lost immediacy. A
simple question like ‘Where is Paul today?’ and my mind goes blank. I
find it hard to understand what people say to me if I miss a few words
and can no longer make sense of it. The missed word makes the
sentence full of conflicting, meaningless sounds. And sometimes even
if I hear everything you say, it sounds meaningless, just a jumble of
sound and I need to ask you to repeat it again.
Have I asked you this before?

This intermittent reception applies to what we have just asked you, too,
so we will ask the same question again without any awareness we have
asked before. And we need to ask you questions to address our anxiety
about an issue.
Paul and I, for example, went to a wedding of some dear friends at
our church one Saturday morning. That afternoon, Paul said, wasn’t it
lovely this morning?’ I said ‘What was?’ I had no recollection of what
surely was a major event in that particular day. But the curtains had
fallen across behind me.
Yes, it does drive you crazy to hear the same thing over and over,
but how much worse is it for the person with dementia who knows
they have asked you a question, but can’t remember your answer? I
often ask a question, and realise by the expression on the person’s face
that I have asked this before, maybe even only a short while ago. Some-
times one of my daughters will say, in frustration, ‘I told you that
before!’ But I have no memory of the answer, so need to ask again.
Please be patient with us.
One of my frequent questions is ‘Have I seen this before?’ for a
book, a movie or TV show. And even if the answer is ‘yes’, I still
find the storyline new and captivating. I have no memory of what
happened before. But reading a book or following a story on TV is a
struggle, as I cannot recognise the faces or names, nor remember the
plot as it unfolds.
Where is it – you took it!

I put things in the wrong place. This is because I am walking around
with something, going to put it somewhere, then something else pops
into my head and I put that thing down, and of course cannot recall
later where that was.
I have not hidden things on purpose. And I can’t remember where
I’ve put them. I can’t even remember that I had it in my hand, so I am
just as likely to accuse you of taking it and hiding it.
That’s a very typical day. I do the tidying up and of course, that’s

useless isn’t it, because to the question ‘Where did you put it?’, the
answer is obviously ‘I don’t know’.
I need lots of clues

Some things I register and then forget – so if I am reminded, I might
have some recollection. It is no longer under my control, and I need
you to prompt me with lots of clues. It’s as if I have lost all but one
remaining key to the filing cabinet of my memories. You can help me
try to retrieve a memory by finding a word, or a sentence, or a descrip-
tion of the event. I remember trying to describe this feeling to Paul
when we were in the hotel in Kyoto. I pointed to the outline of squares
on the paper shoji screen behind us. I said ‘Each of these boxes is like
one of my memories, kept locked up behind a little door. This is a wall
of doors, a whole screen full of them, but I can no longer see behind
this screen.’
I need you to find keys to these boxes, with a word or a phrase, to
unlock the treasures of memory that have been locked away. My keys
are lost, and I have this two dimensional feeling, of a blank wall of
memory doors behind me for which I have lost the keys. Give us clues
so we can join in with your memory and do not be upset if the key no
longer fits the lock, or the store of memories behind the door has
faded. Often I simply stay blank and have no recall to share.
Questions like ‘Do you remember?’ will make me panic. The black
curtain falls down behind me as I desperately try to search for some
recollection connecting to what you are asking. My speed of informa-
tion processing is far too slow. Descriptions of your own recollections
are much more helpful, as these give me time to think and may also
sometimes these trigger my memory so I can share my own feelings
with you.
But other times I do not register the experience, so even if I am
reminded, I have no idea of it ever having happened. But I’ll pretend it
did. Paul can tell from my vague look, and the way I slowly say,
‘Oh,…right.’
I can’t really remember writing my first book, except that it took a

long time and was difficult. But writing it, talking it through with Liz
MacKinlay, helped to build up my sense of self, and to reflect on my
personhood.
Not knowing labels

A name without a context is a real challenge. One day, Rachel, my
daughter’s partner, took me with her to look at plants when we were
visiting Canberra, where we used to live. She said, ‘We’ll go to Phillip
first, then we’ll…’ My mind fogged up, puzzled and perplexed. What
was this thing called ‘Phillip’? A person, place, shop, building? Only
when we got to our destination did I realise that this was the name of
our familiar shopping suburb. Rachel and I had a wonderful day, as I
rediscovered in my head somehow a few of the real places that
belonged to disconnected labels of my old home town.
I am slowly learning how to live without remembering labels: your
name, or even my name. I know faces and know I connect with them
somehow, but not why I know them and what I know about them. It is
a world in which I know that I know you, but not why I know you.
Your name, the label that belongs to you, often is not there. Your
face is familiar somehow, but meeting you happens too quickly for me
to search through my disjointed memory and find a label for you, or a
context of why I know you, or any information that might belong to
what I know about you. I need time and clues, not questions. Try to
chat about our shared experiences, so that I can find out why I know
you, then maybe your label will appear. Don’t just give me your label,
as I need more than that to really know who you are. I need some detail
as to why I know someone of that label.
When we visited Canberra recently, and saw my friends at church
and at the Alzheimer’s Association, I realised something quite impor-
tant about the way I recognise people. I would see a face, and know it
well, and there would be a spark of recognition, and of joy in
knowing. I would then smile and hug these dear people. I knew they
loved me for who I am, and was therefore confident to say to them, ‘It’s
really lovely to see you, but I can’t remember your label, I can’t
remember your name and who you are.’
You see, I did not know their name, whether they were married or
not, whether they had children, if they had a job. I knew nothing
about them, nothing in the ‘normal’ sense of how you know people
and recognise them. The way I know people is in a spiritual and emo-
tional way. There’s a knowing of who a person really is right at their
core. But I have no idea who they are, in terms of who they are meant
to be in your world, of cognition and action, and labels and achieve-
ments.
This ‘knowing’ at the level of spirit, of a significant other, exists
without the need for labels formed by cognition or even emotion. But I
wonder if there would be a block to my knowing you, if you were
upset that I did not know your label, your name, and who you are and
why you are important to me?
Is my ‘knowing’ you triggered in some way by a connection with
you, a response from you that reaches spirit to spirit? If you are hurting
because of my lack of cognition, will this prevent me from knowing
you? I do not know this yet, and of course, if and when it happens I
will not be able to tell you.
I usually enjoy each moment of our time together, so why is it so
important that I remember it? Please keep visiting me, even if I might
not remember that you came before, or even who you are. The emotion
of your visit, the friendly feelings you give to me, are far more impor-
tant. It is the emotion I connect to, not the cognitive awareness of the
event.
Why does it matter if I cannot remember, if I repeat myself, or
forget what you told me. If I enjoy your visit, why must I remember it?
Why must I remember who you are? Is this just to satisfy your own
need for identity? Your visit is not a cognitive experience that I will
store and recall. Let me live in the present. If I forget a pleasant
memory, it does not mean it was not important for me.
I connect at the deeper level of spirituality, so I treasure your visit as
a ‘now’ experience in which I have connected spirit to spirit. I need you
to affirm my identity and walk alongside me. I may not be able to
affirm you, to remember who you are or whether you visited me. But
you have brought spiritual connection to me, you have allowed the
divine to work through you. This can happen across cultures and lan-
guages, and is a very meaningful depth of communication, one that
perhaps we should all strive for.
Anxiety and distress

What behavioural and personality changes are associated with my
dementia? Certainly I have problems with speech, and maybe I do get
more teary than before. Yes, and also maybe I am more demanding, less
certain and more impulsive, and less in control than before. But hardly
the sort of thing I had read about – of outbursts of anger, of becoming
someone so very different to whom you were before. If anything,
friends say I am nicer than before. But my family see me in a panic, out
of control, unable to cope.
When I asked Ianthe, she said, ‘Well, Mum, you used to be so
focused’ and Rhiannon said, ‘You say “I can’t do it!” now. You never
said that before, you were always a “can-do” person.’ But although my
behaviour might have changed, I still feel very much me. I am here in
the world around me, as long as I take my anti-dementia drug. Without
it, I withdraw and retreat to my own small world. Everything is too
busy and confusing.
On the edge of panic

My stress tolerance is very low, and even a minor disruption can cause a
catastrophic reaction, where I shout or scream, panic and pace. I need
calm, no surprises, no sudden changes. Anxiety is an undercurrent in
our disease. I feel I have to do something but can’t remember what.
Often it feels like something terrible is going to happen, but I have for-
gotten what it is. With the stress of many activities at once, I become
very focused, trying with all the brain I have left to concentrate. Telling
me to rest won’t help, but helping me to complete the task will.
Panic attacks come upon us like storms, expressing an inner
conflict as we desperately try to cope with stress. We sense imminent
doom. Please help us and give us a break from the effort of coping. If I
am overwhelmed by stress, my brain reacts to this struggle with a
migraine. Another way for us to deal with stress is apathy – to switch
off, because of overload. There is simply too much happening at once
to bother to try to cope. It’s not a lack of interest, but of energy.
Anxiety is not something we can control – that controlling bit of
our brain is missing. So we are reliant on you to help us calm down –
but telling us to not worry is not the way! We have no resources to do
that. Creativity is what you will need! What would you do with a
troubled toddler – divert attention, help complete a task and give reas-
surance.
We have reason to be anxious. For many of us not being able to
write and read is a real worry. Getting dressed or undressed is a stress,
as we try to work out what to wear and how to put it on. And of course
we know we cannot remember things, so are always worried we will
lose something unless we keep track of it all the time. We fret as we
cannot remember what we are supposed to do – is it Monday, morning
or afternoon, was there something I promised to do, was there some-
thing I planned to do, is there washing to hang out or bring in, did I
agree to ring someone? All these thoughts spin around and get us
nowhere as we simply cannot remember.
Maybe in some way we are not stressed if we cannot remember?
But that is not how it is for me at the moment. One day perhaps I can
become used to not being in control, not knowing about what I am
supposed to do, and to relax into my dementia, as it were, then I could
be without stress. Perhaps this is what I have to look forward to as I
progress with this illness?
But now quite often I have this feeling that I have forgotten some-
thing that I should have remembered, and it is important that I
remember it, but I can’t think what it is because obviously I can’t
remember. And it might be something terrible is going to happen if I
don’t remember it, and it just goes on and on like that.
Any unfinished job preys on my mind, nagging away. I might
forget this task if I do not do it right now! So I persist at the task to the
point of exhaustion, and get fatigued. Then I become irritated, blank,
pacing around, not able to start or stop anything. I can’t break the task
into manageable bits, so I just keep on going, hoping it will become
clear as I proceed.
I worry constantly about finances, about the future, about our bills,
about what has to be done, what is on my job list. I feel so out of
control that I can’t cope with any uncertainty. I have a rising sense of
frustration, much closer to the surface now, so much so that I can
understand how someone without words might hit out physically
when they have lost the word for ‘no’, when someone is trying to make
them do something they don’t want to do. I want you to make sure I
want something before you force it on me. I am grown up now, and
may not want to listen to your music, or play your games or eat what
you want me to. I am worthy of dignity and respect, even if I cannot
speak.
Constant reassurance is needed so that anxiety does not turn into a
catastrophic reaction. We are all individuals, there is no ‘right’ way of
doing things. Families must remember who this person was before
their diagnosis and help the person to maintain as much independence
as the person with dementia is comfortable with.
Pacing and wandering

I often get very distracted and agitated, for no apparent reason, but it
seems to arise mainly from this undercurrent of lack of recall and
possible forgetting of something important. So I pace around almost
like a caged lion, or simply can’t sit still, particularly in the evening.
Often my cat will come to me and look anxious too, so I offer my lap to
her, and she comforts me with her warmth and purr. My cat is a
pure-bred Oriental, so is very focused on her owner, much in tune with
my mood and needs, and always needing to know where I am. She is
my dementia cat!
I find it difficult to settle at night, probably because it is hard to
follow the story on TV, the adverts are noisy and disturbing, and even
reading is tiring and difficult. If I retreat to a warm bed and into a
routine of sitting with my cat and a book, this helps. Also, I take half a
tablet of Oxepam at night, which calms me, takes away the feeling of a
knot in my stomach and tension in my neck and shoulders.
I do get into a complete mania on occasion, at any time of the day,
when I become focused on a task. I cannot be switched off nor jollied
out of it. I become exhausted but oblivious to anyone’s efforts to
reassure me and divert me. Paul then simply quietly helps me by
working at the task with me, reassuring me in some way that it will be
done. As my neurologist commented, when I told him this, ‘Paul is
more valuable than drugs.’
Pacing around somehow releases the tension, the movement dis-
tracts me from the real issue of not knowing what day it is, what time it
is, and what I am meant to do. I can’t think what I am meant to do, but
walking around makes it feel as if I am doing something, and releasing
that pent-up energy inside of me, that frustration with not knowing
what I am meant to be doing.
Background noise or vision…

These make it worse by scrambling the brain. Background noises and
motion – like at shopping centres, doctor’s surgeries, and often
dementia day care centres and nursing homes – with radio, TV, tele-
phones, people talking – make it exhausting for me to keep following
the thread of what is happening, and I become very tired. Is this noise
and motion at these places because the staff are bored?
The noise or motion feels like an egg beater in my head, scram-
bling what is in there and putting a static sound or visual screen over
what is coming in. It is as if I have lost the filter in my brain, to focus on
one thing out of many. Sounds can become a ‘hubbub’ and I can’t
make out what people are saying to me. Sometimes it is difficult to
recognise sounds. If the doorbell and phone ring at the same time my
mind freezes, unable to work out what the sound is or what to do. It’s
as if the sound, so loud, has blanked out my brain.
But if the music forms a pattern, it can soothe me and become a
gentle part of the background. It needs to be regular and harmonic like
Baroque, or familiar and soothing like Mozart or Enya, to settle me
down, as long as I am not expected to do much at the same time. If the

music is challenging, loud and not familiar, then I become anxious,
scrambled in the head, and unable to listen, speak or think. All I hear is
whatever sound is loudest and this bangs around inside my head,
bruising my brain, grating against any thoughts or words that are
there.
My functioning is as if I am walking a tightrope – I cope very well
while I am well rested and not under any stress or any conflicting
demands. But if the phone rings as well as the doorbell, or two people
ask me a question at once, or I am tired or stressed, then I become
confused, unable to think what to do, and my mind simply goes blank.
Tiredness of the brain…

After any mental activity, say at the computer, reading or having a long
conversation where I need to concentrate and pay attention, I get very
tired. I feel somehow ‘scoured out’ inside my head. My tiredness is of
my brain, not my body, so that I simply need ‘brain time out’ – sitting
quietly alone, with no noise or activity around me. I could still go for a
long walk, maybe with someone to guide me who says very little, so
my brain can rest.
When my brain becomes overloaded and fatigued, it’s like a short
circuit, and my brain cuts out. I get a blank, brain-less look and
withdraw from what is around me. I’m not really there, my eyes cannot
focus, and I can’t say much. The fog thickens and I can’t follow what is
being said or is happening around me. Speaking, hearing, walking: all
then become difficult after overload, and I need routine and familiarity
within which to cope and to regain my sense of self.
I have heard that dementia disturbs the circadian rhythm of our
bodies. For me, it feels as if I have permanent ‘jet lag’. I toss and turn
waiting for sleep, and it is as if I have lost the ‘off ’ switch in my brain. I
find that visualising calm places in my mind, or praying, as I wait for
sleep, is increasingly difficult. I can no longer hold onto images or
words in my head. It all becomes a muddle of emotions bubbling up
from what has happened through the day, so increasing my distress.
My body is tired, muscles relaxed. My thoughts are not unpleasant

– no worries or anxieties. But my brain simply will not switch off and
let me go to sleep. But less sleep makes the anxiety and confusion
worse, so I use Temazepam to help me sleep. Warm milk, a warm bath
or relaxing music can also help.
Either I can’t get started or I can’t stop!

I had a wonderful email ‘conversation’ with Lynn, the President of
DASNI, who also has been diagnosed with fronto-temporal dementia.
She said, ‘I am finding that apathy some days can play a really big part
and I do not feel like doing anything. Do you find that too?’27 And I
replied, ‘Yes – it feels as if everything is too complicated, too difficult,
and I can’t decide what to do so I drift around.’
Our ‘conversation’ continued as I said, ‘You cannot imagine how
much I can relate to what you are saying!!! On my good days it is like I
have a bundle of energy and can race around (in the morning only
usually), and get a lot done. I get very manic, wanting to finish every-
thing right now, and don’t know when to stop! I rush around till I get a
headache, and usually am exhausted by the afternoon, and by the
evening all I can do is sit and wait for bedtime!’ Lynn replied, ‘This is
exactly me. I have been plagued by headaches in the last while…I
never was a person to get headaches but now I get them frequently.’
An example of how focused I can become was when I wanted to
clean our house at midnight, it could not wait till tomorrow, it had to
be done right then. There was no way I could sleep. So Paul got out the
vacuum cleaner and patiently helped me clean the whole house.
Finally we sank into bed at about 2 a.m., and I was happy, yet dis-
tressed that clearly I was no longer in control of these urges and
impulses.
I flare up, say bad things, decide to move, to travel, to give away
cats, to adopt cats…my life seems to be a continuing drama of new
things, when I should be trying to stick to a routine.
And you cannot imagine what it is like to go shopping with Lynn
and me! Well, Paul is a most patient man, and waited for hours as Lynn
and I tried to make up our minds at countless shops. I find that any
choice is just too hard. Do I want tea or coffee? – even this is a hard
question for me. How can I possibly hold onto the information of all
the alternative possibilities in a clothes shop, or a food shop, in order to
make a choice? There is simply not enough room in my damaged brain
to do that any more!
Decision-making is impossible! Finally I buy something but when
I get home, I discover that I already have that item in the food
cupboard, or this item of clothing does not match anything in my
wardrobe. I cannot carry in my brain a register or catalogue of what is
at home in order to shop and to choose.
Where am I?
Part of our rising levels of anxiety is losing our way, not knowing
where we are. I have somehow lost the map in my head, or at least the
way it connects to reality around me. So I need you to guide me
around, unless I am in very familiar places in the area around my house.
Finding my way is now becoming increasingly difficult. When Paul
and I go for walks, I hang onto his hand – he is my global positioning
system. I usually have no idea where we are, which direction we are
going.
In May 2000, I went by myself to a university residential in
Bathurst, as part of my counselling diploma. It was a nightmare – I was
unable to find my way from the residence, to the dining room, to the
lecture room, only a distance of, say, 50 metres each time, and just had
to follow familiar faces (of course never familiar names – I had no idea
what their names were). It was the last time I tried to go anywhere
unfamiliar without a care-partner to guide me.
Communicating
We know what we want, but we can’t say it. In my view we are not
cognitively impaired but communication impaired. Speaking, reading,
writing, numbers have all become scrambled. The wires in our head
that once did this all somehow automatically, have now burnt out.
They are misfiring, becoming crossed over, or absent. As a result, our

struggle to communicate increases each day.
What is that word I want?

As we speak, gaps in the flow of words appear. In our head a string of
pictures has formed, but the words for those pictures no longer make
their way into our consciousness, let alone to our mouth. The words
for those pictures seem as if they are on a loose spinning wheel. If
interrupted, I have to start again, or I simply forget totally what I was
going to say. And the thought does not come back later – it is gone for
good. My sentences have become more convoluted as I struggle to find
the right word, and if the wheel spins too far, the wrong word comes
out.
For me, speaking is always a struggle now, so I am slower and more
confused in what I say. It is as if my shelves of neatly filed words have
been swept off onto the floor, and I have to search among untidy heaps
to find the word I am looking for. If I find it, or its nearest equivalent, I
then have to work out how to pronounce it and where to put it in a
sentence. I give up. Most of the time I use the word ‘Thingy’ which
describes anything I have forgotten the actual word for! A lady who
used to be a teacher said ‘My adjectives are disappearing – and I used
to be so strong in using them.’
My sentences come out very scrambled, and I come out with odd
things – like saying, ‘You’ll need some more cereal water’ instead of
‘milk’. I am describing the word because the wheel has not spun to
give me the correct term, only the description. Or the wires are crossed
over in my brain and the wrong word comes out altogether, like the
time I said to my daughter, ‘Let’s go and plant the horses’, and we both
doubled up with laughter realising what had happened. I had seen the
horse when thinking about planting trees. Then there was the time
when I yelled out to Paul, ‘Oh my goodness, the long thing is rushing
around everywhere!’ meaning ‘the hose is on the ground gushing
water’.
A real difficulty in speaking is words like ‘we’, ‘they’, ‘I’, ‘you’,

‘he’ – when I have to work out who is doing what to whom. It simply is
so hard, and doesn’t seem to make sense in my head. I talk about our
family finances as ‘my’ money, ‘my’ bills, ‘my’ tax, even though we
have joint accounts and everything is shared between us.
But when I meet someone outside the family, I speak very slowly,
and use all my focus and effort to appear normal. I am like a high-wire
act in a circus, needing lots of concentration otherwise I’ll fall off. A
long chat with you, and I’m exhausted and sore in the head afterwards.
With the family I have a safety net for my high-wire act, and I can relax
and just try to communicate my thoughts and feelings as best I can. It
all comes out very muddled, but the family do their best to mind-read!
As we write, the letters come out peculiarly shaped or missing, and
what appears on the page can look like an unfamiliar jumble, no longer
recognisable as our handwriting. It’s like speaking, somehow the right
word or tense is suddenly missing in my brain when I need it. But I can
bash away at the computer – and get a good laugh from the spell
check!
This book took six years to write, and is the result of talks I wrote
and gave in this time, emails I wrote and received, and interviews with
the media. I cut and pasted all of this material and then tried very hard
to put it all together to make sense. Through doing this, I had time to
share my thoughts slowly, reiteratively and reflectively.
Reading is becoming increasingly difficult, following the lines on
the page, and remembering the names and the story. But I have
easy-to-read books, and work at it, so I am still able to read. I just must
never stop, it seems, nor even slow down! I try to use a card under the
lines to keep my eyes tracking the page. And of course when I turn the
page, I have forgotten the last few lines, so flip the page back and forth
to get the flow of words into my head. I try to note down things, and
keep re-reading sections. There is a big problem of thought-sequenc-
ing, where I can’t hold onto the ideas, names or concepts long enough
to understand them.
Mostly I skim read, as otherwise I can’t grasp the thread of the
story. If I go too slow, I forget what has just gone before, so I need to go
fast to make the story somehow hang together. It seems as if there are
just too many words to put together and make sense, and not enough
space inside my head to sort the words into a story and to hang onto it
long enough to follow the plot.
It’s like I have a patchwork mind, reading in patches, then trying to
put it all together. My brain is like a sieve, with facts falling through
the holes. I need to read fast, as if I’m impatient and in a hurry, to stop
them all falling through the cracks. It is an exhausting way to read, and
I can really understand how friends of mine with dementia say they
have forgotten their glasses, or are no longer interested in reading. It is
one more huge effort in our daily struggle. Writing is the same –
intense concentration on each thought, quickly getting it onto paper
or computer, and then later skim reading to try to make it into a
coherent whole.
I shared some of my feelings and struggles with reading with my
friends in DASNI, saying, ‘I could read an article, putting bits and
pieces together, and more or less making sense of it. But to follow the
lines and thread of a long story line in a book – especially turning a
page – was really worrying and not possible. I lost patience, was too
agitated, and lost the plot.’
I then outlined some of my strategies and struggles with very
simple books, and how I had given up on Solzhenitsyn’s Gulag Archi-
pelago. John from the US wrote ‘I got so tired of making notes of story
lines, which character was which. I’d have to do this each night after
reading a little. I just gave up…your posting was so valid in my case
about saying, “I’m too busy to read”, when it’s really the frustration of
28
trying to follow the story, rereading the same page a couple of times.’
And Jan said, ‘You are able to put [this] into words so easily…I will try
29
your approach. Thanks for the tip.’
The wisdom of Morris then inspired me to keep up the struggle,
when he wrote ‘I hope you get back to Gulag, Christine. Solzhenitsyn
can inspire us to survive (one day at a time) the dementia Gulag (Soviet
30
prison camp)… My secret is skimming and feeling free to skim.’
Numbers get all muddled up!

Calculating has become another hurdle. We struggle to write numbers,
line them up and do simple arithmetic. We simply cannot remember
what we are supposed to do. What does an eight mean, really? What
does it mean to say two times two? Where inside your head does
twenty take away seven happen?
Telephone numbers get disordered as I write them down, so I
cannot be relied upon to transcribe a number. I misdial long numbers
for overseas or mobiles. It takes a longer time to dial the number and
the phone often cuts out. Multiplying or trying to manipulate numbers
makes little sense, and I’m back to adding up and subtracting, and even
then it’s a struggle. But I keep practising, keep trying to check our
bank statements, and using a calculator, to keep some level of skill.
Isolation
Isolation is a real problem for us. Many of us feel that some people even
think dementia is contagious! We don’t see many friends any more. It
seems as if people treat us differently now, because they know we have
dementia, and they don’t know what to do. Maybe they are worried
about us saying something odd or doing something bizarre? Often we
feel like we are being watched in case we do the wrong thing.
People with dementia often talk about friends and extended family
continuing to visit for a while after diagnosis, but then no longer
coming. One fellow said: ‘They get upset when we lose our train of
thought, or leap in with the answer to the question because we can’t
get the answer out quickly enough.’
But it is an issue for our care-partners too. I have heard one lady say,
‘I am so busy being busy, remembering for two, doing everything
around the house. When do I get time to socialise? Friends offer to
help but they really don’t understand what it is like.’
There are many ways to help

I think the important thing to remember about dementia is that the
symptoms we show are the result of several things working together,
some of which you can address. Firstly there is the brain pathology, the
damage that is occurring day by day. At the moment there is little that
can be done, except in cases of vascular dementia where low-dose
aspirin may reduce the likelihood of further damage. Let’s all work
together to encourage research for a cure so that one day we can stop
the damage.
Other important factors influencing the way we react to this brain
damage, and so exhibit the symptoms of dementia, are our personality
and our life story. This is the same in many illnesses, as our attitude
truly determines how we tackle major issues in our lives. So it is with
dementia: how we cope with this struggle into increasing problems
with thinking, memory and physical functioning often depends on
how we have coped with problems in our past life. You can help here
by building on our strengths, working with reminiscence, and most
importantly by trying to understand what this assault to our function-
ing is like.
Then there is our environment, and there is plenty you can do to
manage this, whether we are at home or in residential care. I talk about
this later in this section.
We should try to rekindle and remember (there’s an irony) our
memories through photo albums and life histories. Let’s keep up with
friends, books, films, church, whatever gave us these memories. But
let’s also create new ones. Days out, travel, gardening, sport, reading,
shared time – as long as we want to do these things, whatever we want
to do. And let’s remember those things too, our more immediate
history and life story. Keep that camera handy.
That’s not easy for people who have spent many years together,
who are probably overwhelmed by loss. But life is not all in the past.
Carpe diem, let’s seize the day – together. It doesn’t really matter if I
don’t remember today or don’t know what day of the week it is. As
long as we all enjoyed it to the fullest together.
Finally, and in many ways most importantly, there is our underly-

ing spirituality. This is not simply what religion we might practise; it is
what has given us meaning in our lives. Maybe it is our garden, our art
or our pets. It may well be familiar rituals of our religion. It is impor-
tant for you to help us reconnect with what has given us meaning as we
journey deeper into the centre of our being, into our spirit.
We can live in the present, treasuring each moment, and it is impor-
tant for us to feel peace around us. A beautiful garden or the delights of
nature can capture this peace, much as a bud expresses the full potential
of life.
Get the right diagnosis

The first step to helping us is to make sure we get the right diagnosis,
and that we are followed up regularly. There are around 70 causes of
dementia. Of course, many are quite rare, but all too often a diagnosis
of Alzheimer’s is given, with the assumption made that the person will
deteriorate rapidly according to expectations. And often that is the
case, because depression sets in. This is hardly surprising, given the
nature of the diagnosis. Depression is an excellent mimic of dementia –
and for many the diagnosis is truly the beginning of the end, and a
self-fulfilling prophecy – possibly much of the deterioration in the
early stages is due to depression.
But we should be much more cautious, and more willing to recog-
nise that the brain is a very individual organ, and each person responds
to brain damage in a different way. Not all dementias are Alzheimer’s,
nor are all cases of Alzheimer’s similar in the way they affect the
person. This is important, as treatment and management vary accord-
ing to the disease. We need to be careful in making a diagnosis, and to
encourage people and remind them that they are an individual, with a
unique way of handling any disease, particularly this one.
Fronto-temporal dementia is under-diagnosed, as is Lewy Body
dementia – often in older people Alzheimer’s is the catch-all label
used. In younger people the opposite occurs. I know someone who
was initially told she was menopausal, but she has Lewy Body
dementia. Another friend was told he had Parkinson’s, but his difficul-
ties in working out how to put a tape into the car stereo were because
of cognition not muscular control.
In support groups I have been to, one issue frequently talked about
was the lack of interest and support from local doctors. I gave a talk in
2001, in the offices of a local medical association. This had been
organised by the Alzheimer’s Association. There was excellent prepa-
ration, promotion, snacks, professional video, a speaker – but no
audience. Not a single doctor came to that evening’s talk, so I spoke to
the video camera. It was a poignant and powerful reminder of just
what is wrong with the local doctors.
Our doctors need to be alert to the early signs of dementia, and to
be up to date with treatment strategies. It is important that people are
carefully assessed, and referred by their doctor to a specialist who is
prepared to follow up every three to six months until a more certain
diagnosis can be made. And then they should be seen every six months
to a year.
If I had simply accepted my initial diagnosis of Alzheimer’s
Disease, I could have certainly subsided into major depression and
been put into a nursing home as a consequence – where I would have
remained depressed. And what if I had not been prescribed medica-
tion? Now that I have been followed up since my initial diagnosis, it is
quite astounding how unexpected the outcome has been. I believe
much of this is due to the attitude of my neurologist who observes me
as an individual with unique responses to brain damage. Also I had a
careful and methodical local doctor who referred me very quickly to
this neurologist. Now I am blessed to have a really good local doctor
who reviews my functioning and medication regularly, and refers me
for annual check-ups.
Treatment delayed is treatment denied

As soon as a diagnosis of dementia is given, treatment and support
should start. Why are many of us not offered treatment? Often we are
just told the ‘dementia script’ of decline then death, and given no
hope. There is hope after a diagnosis of dementia. It is possible to live

positively.
Anti-dementia drugs, such as the cholinesterase inhibitors, should
be offered as soon as possible after diagnosis. They can help what
remains to work better, but they do not stop the damage. It is vital to
take medication as early as possible, because function we lose is not
easily regained. Treatment delayed is effectively treatment denied, as
we will have lost function forever. The drugs can stabilise our
symptoms for periods of at least six months to a year, and in some cases
a lot longer, giving us valuable time at home to enjoy each day while
we can still do a great deal. They won’t make us live longer, but may
delay our entry into a nursing home.
There was an alarming time for me in August 2000, when I
switched straight across to 10 mg of Donepazil (Aricept), from the
maximum dose of Tacrine. These were both anti-dementia drugs, but
worked in a different way. I had a difficult month of adjustment, and I
wrote about my struggle to my friends in DASNI:
Thanks everyone for your support. I’m having ‘down time’ at
the moment. My brain feels like a huge ball of cotton wool got
in there, my eyes feel swollen and tired, and my legs feel like
lead. I’m trying to adjust to Aricept (10 mg) having switched
over on Sat after five years on 160 mg of Cognex (Tacrine). I
just hope I bounce back soon.31
It took a while, but I did bounce back, from the fuzziness of confusion,
and eventually was able to recover a level of functioning that allowed
me to enjoy each day. Aricept, and before that, Cognex, has made an
enormous difference to my quality of life, keeping me able to function
to my full potential. I now also take Ebixa (Memantine). Without my
tablets, it is like thinking in fog and walking in treacle.
Without these medicines, I would not be able to speak or write, let
alone produce this book! I would be very slow, tired and confused.
With my ‘battery charger’ – as I call it – I can enjoy a full day as long as
I am never under any stress. It raises the levels of a type of chemical
messenger, acetyl choline, in my brain, so there are more chances of
signals getting through in my brain. It does not stop the brain damage,
nor cure the disease, but without it I seem to wind down, no longer
able to speak, think or do much at all.
For many people these drugs help in daily functioning, making the
mind clearer and activities easier – even sleeping can be much
improved. One lady I know noticed these changes days after starting
Aricept, and we certainly notice her improved ability to use her diary
and calendar to keep her life organised. She was there, at home, when
we arrived to give her a lift to the support group, instead of out
walking her dog, having forgotten completely about the group.
Other medication should also be offered, particularly for depres-
sion and vascular disease where appropriate. And we need to know
about alternative medicines such as Vitamins E and C, lecithin and
gingko biloba that have been shown to help address brain damage.
Try to understand how hard it is for us

Remember that our odd behaviour and memory difficulties are the
result of a physical disease. Husbands and wives of people with
dementia have said, ‘She or he doesn’t seem to want to do something,
doesn’t seem to try very hard, is being awkward or difficult, just
watches TV, doesn’t really do gardening, just potters, not like before.’
All sorts of negative comments. We try to remind them that their loved
one is trying very hard, it’s just that you can’t see the missing bits that
they are having to cope without.
We say, ‘If they had a missing arm or leg, you’d be very proud of the
way they are managing, and they are trying just so hard to cope, and
should be praised for their efforts. It’s not easy to realise how much
effort they are making in simply living each day, and how this physical
damage is causing the problems you are seeing.’
When I asked people with dementia whether families realised how
hard they were trying to cope, they said, ‘No, because you look normal
but you’re not, and it’s a real struggle just to get through each day.’ And
when I asked whether their family really understands, the response
was ‘No, not really. They think I am not trying hard enough. And
sometimes they expect too much of me, but at other times I am not
allowed to do what I am capable of. I am not allowed to choose what I
can or cannot do. But then sometimes it is easier to walk away, than to
argue that I can do something.’
Above all, please remember we are individual human beings. We
have dementia, and you can’t see the damage, so you don’t know what
it is like. Don’t assume too much. Take us at face value, as a person, first
and foremost, not a disease. Then help us to keep on achieving to our
full potential.
Value us, give us dignity

How you relate to us has a big impact on the course of the disease. You
can restore our personhood, and give us a sense of being needed and
valued. There is a Zulu saying that is very true, ‘A person is a person
through others.’32 Give us reassurance, hugs, support, a meaning in life.
Value us for what we can still do and be, and make sure we retain social
networks. It is very hard for us to be who we once were, so let us be
who we are now – and realise the effort we are making to function. If
you could see the damage inside our head, you would be amazed at the
way we are managing despite missing bits in our brain.
Include us in the activities of community organisations, particu-
larly those addressing dementia. Are we on your committees, boards,
seminar organising groups and suchlike? Unlike people with other
diseases, we seem to be written off from active participation in address-
ing our own needs.
I was greatly encouraged to get an email from Professor Steven
Sabat of Georgetown University, Washington, D.C. He is writing
about how people with dementia can become active participants in the
33
research process, not merely research subjects. He says in his paper,
‘One way to help the person with AD construct a worthy, valued,
social persona is to engage said person as a collaborator in research
efforts of which there are many types… It is through such research
efforts that we may find some pathways not only toward providing
people with AD another means by which to construct worthy, valued,
social identities, but also toward the unearthing of new knowledge

and perspectives about the nature of AD and its cognitive and social
effects.’
It is also important to think about our lack of ability to speak. In
what way does this limit you in valuing us, in giving us dignity and
personal space. I know that when I am no longer able to speak, I could
become violent quite easily. People make you do things that you don’t
want to do, and you have no word for ‘No, thank you.’ So all you can
do is push them out of the way because they want to shower or dress
you, or give you food you don’t like.
We need to be given the same choices as you, even though we
cannot tell you clearly what choice we want to make. And we should
not be forced into a pattern of behaviour that simply suits the nursing
home, or your own ideas of what we should be doing. Think of us as
an individual, not just a care-recipient.
Several times, after my talks, I have been asked ‘What should I do if
the person doesn’t want to get out of their pyjamas in the morning?’ I
usually say, ‘What do you do on a Sunday morning? Do you always get
dressed? Do you still sometimes want to go back to bed? Or walk
around the house in your pyjamas? Does it really matter that he’s still
in his pyjamas?’
The world goes much faster than we do, whizzing around, and we
are being asked to do things, or to respond, or to play a game, or to
participate in group activities. It is too fast, we want to say ‘Go away,
slow down, leave me alone, just go away’, and maybe we might then be
difficult, not cooperative.
This is called ‘challenging behaviour’. Well, I believe that this is
‘adaptive behaviour’, where I am adapting to my care environment. I
am pushing you when you want me to have a shower, or spitting out
my food because I don’t like it, or going to the toilet in the wrong
place because I have forgotten where the toilet is, or walking into the
wrong person’s room because I don’t know where my room is. Shower
us or bath us at a familiar time for us. Find out what food we like. Leave
the toilet in clear view. If we can’t read numbers anymore, why not
mark our rooms with a distinctive sign or picture, something special to

us, like a picture of my cat or my favourite flower.
If the care environment is focused on the person and their needs,
none of that so-called ‘challenging’ behaviour needs to happen.
Find help and support

The human brain has developed over a lifetime of experience, in a
variety of environments, and so exhibits its own unique coping mecha-
nisms in the face of internal devastation. The initial struggle with cog-
nitive decline and confusion, followed by the diagnosis of dementia, is
a traumatic personal experience. Yet this occurs in a social milieu – in
our family, in our community, in the context of all our social relation-
ships. It is also an experience set against our past attitudes and behav-
iour, and our life story.
We are each so unique, and the brain damage will affect us differ-
ently according to our environment and to our history. As we lose our
cognitive abilities, our stress threshold is lowered and we react more in
accord with our deep-set emotions and our past expectations. We need
a great deal of help and support, as we struggle with this decline and an
increasing inability to deal with it.
Information and help

At the beginning, information is important and empowering. Tell us
about the diagnosis, about how little is known, and how individual
each one of us is. Refer us to the local Alzheimer’s association for infor-
mation and support about dementia. Provide help sheets for us. We
need to understand the nature of this disease, how it is as individual as
we are, and that there are many things we can do to help ourselves.
We often need help around the home, particularly if we live alone –
and we do want to remain independent for as long as possible. First, we
need access to transport – not complicated public transport systems in
which we will get confused and lost, but lifts in cars, taxis, buses.
Help us plan for the future

A main issue for people with dementia in my experience is being a
burden to their family, and they want to talk about future care issues,
such as legal and funeral arrangements. Unfortunately they often feel
that they couldn’t talk about these issues because it might upset family
members.
When Michelle, the Executive Director of the Alzheimer’s Associ-
ation in Canberra, ran a workshop for families, ten families partici-
pated. Seven families went home and discussed future care arrange-
ments, looked at residential facilities, made wills and even discussed
what sort of funeral they would like.
Later, a husband caring for his wife who was about to be admitted
to residential care thanked Michelle for giving both him and his wife
‘permission’ to discuss these very important and sensitive topics while
she still could. He feels comfortable with his decision knowing that he
and his wife planned for this day together.
Offer us legal help as soon as possible after our diagnosis, because
we have a terminal illness and need to get our affairs in order. I
arranged an enduring power of attorney, giving me peace of mind.
This document, or a living will or advanced directive, allows us to
exercise our own choices about our future. It may well reassure us
about our financial affairs.
However, it will of course distress us to realise that one day we may
lose our ability to read, write and use numbers. For some of us this
occurs very early on in the disease, yet for others it may be a lot later.
Importantly, we need to be regarded as legally competent until or
unless at least two doctors have carefully assessed us and recom-
mended otherwise. We are ‘innocent until proven guilty’. We have full
capacity until it has been proven otherwise. We are each individuals,
with different patterns of disease, and must be assessed accordingly.
Emotional support
In our crisis of identity and our fragmentation, we need you to
acknowledge who we are, to listen to our emotion and pain, and to
treat us a people of value and dignity, worthy of respect. The fear of

future decline is a terrible thing to live with. It’s a curse that leads to its
own fulfilment. The future looks bleak to the person with dementia –
it not only looks bleak, but actually is bleak. So I believe it is wrong to
deny us help to deal with the whole gamut of emotions we will experi-
ence along the journey of their disease.
We need all the support we can get, after having what I think is one
of the worst diagnoses anyone can get. Before diagnosis the person
worries they are going crazy. There may well be much greater tension
in their family relationships as their behaviour deteriorates – and yet
expectations of them do not change. The person feels stressed, tired
and puzzled as to what is wrong with them. The diagnosis itself may
produce feelings of great relief – they are not going mad after all. And
their families suddenly realise there is an explanation for the difficul-
ties they have been having. But it is still a crisis. This is a terrible and
terrifying diagnosis, a shameful one.
The person then begins to experience anger, suspiciousness, frus-
tration, anxiety, sadness, hopelessness, helplessness and self-blame.
And some people experience denial as a way of coping with the crisis
of diagnosis – it can’t be true!
Grief is one of the first and most common reactions to dementia,
and it is an anticipatory loss of self that is being grieved for. The
responses to this grief may be mistaken as being a sign of the
dementia, yet the following are normal reactions to loss: sadness,
anger, anxiety, fatigue, helplessness and shock, disbelief, confusion
and preoccupation with thoughts about the disease, sleep disturbance,
appetite changes, absent mindedness, social withdrawal and crying.
One thing that can’t be overemphasised is the complex, over-
whelming, often obscure and gradual, yet irregular progression of
losses that occur in dementia. We need to grieve many times, as each
successive loss becomes apparent to us. It is so hard to be continually
experiencing loss and grief.
In many cases depression sets in, including a loss of self-esteem,
where everything feels poor and empty. There is a feeling of horror of
what might lie ahead. This is particularly true when the person is
treated in accord with the medical model for dementia, with a progno-
sis of inexorable cognitive decline until death.
Depression may result in ‘excess disability’, giving rise to cognitive
and memory problems additional to those of the disease process. It is
an excellent mimic of dementia, and needs to be treated, so that the
person does not experience an excess disability, and become even more
fearful and confused, entering a vicious spiral downward into worsen-
ing symptoms of dementia and depression.
Denial is a normal reaction to grief, and yet for the person with
dementia it is often regarded as a ‘lack of insight’. Those in denial are
often less anxious and less depressed, so maybe it is an adaptive
response to the grief caused by deteriorating function. For example, if
I think nothing is wrong with me, and ignore what I feel, then there is
nothing to process, nothing to get anxious about, nothing to get
depressed about.
Anxiety and fear become more prevalent as the disease progresses,
and psychotic symptoms begin to be shown. In the early stages, maybe
we can use our earlier learnt coping skills to manage the anxiety gener-
ated by our deteriorating function and disorientation, but eventually
our internal resources are unable to cope, and the anxiety is expressed
as a ‘catastrophic reaction’. This physical behaviour is often referred to
as ‘challenging’, but is usually the only means left for us to express our
anxiety and emotion, and the distress we are experiencing due to our
care environment.
Delusions and hallucinations may occur during the course of
dementia. But again, let’s not be too ready to use a medical approach,
treating these psychotic reactions like those occurring in mental
illness. They may indeed be another adaptive response, as the person
with dementia struggles to interpret a world which is now experienced
as increasingly chaotic as dementia progresses. Can their environment
be made more simple more secure, more comforting, less distressing?
Paranoia and psychosis may well be perfectly logical responses to
what is happening around us, given our memory difficulties, our inter-
mittent reception of what you say, and our fear of not being in control.
We misinterpret our environment, and try to make sense of it to restore

our feelings of order.
The key question is what can be done for the person with a diagno-
sis of dementia who starts along this path of disturbed emotions and
behaviour. Drugs are of course useful for depression, but the debate
continues as to the usefulness of anti-psychotic drugs for what are
euphemistically called ‘challenging behaviours’. At best they may be
modestly effective.
Provide specialised counselling for us, as well as support groups if
we would like to go to these. Or maybe we can use ‘cyberspace’, like in
DASNI, where we can socialise at times when we feel like it and not be
public or confronted, simply sharing privately with others via our
computer how we feel. These groups can give us an environment in
which we feel normal, in which we no longer need to hide the fact that
we have dementia. We need to know we are not the only one that feels
this way. If there isn’t a group, help set one up!
We need emotional support, especially immediately after diagno-
sis. Listen to our anger and grief, and help us to deal with emotional
issues from the past and with our grief at what we will lose in the
future.
Empowerment and hope

Don’t assume we are depressed simply because we aren’t as active as
we once were. People with dementia often say they are not depressed,
yet their family thinks they are. Is this because the care-partners are
themselves feeling depressed, so if they are depressed then surely their
husband, wife, mother, father must be depressed as well? Or is it a lack
of understanding that the person with dementia needs time out to rest
and cannot maintain the same level of participation as before. One
family member commented, ‘He just sits and gazes into space.’ Is this
depression or someone who just needs time to recharge their batteries?
Maybe it is very hard to understand how the vibrant, energetic person
you once knew is now someone who doesn’t participate as actively as
they once did in everything happening around them.
In many ways, the experience of dementia and its diagnosis is like a

chronic trauma, and our feelings are similar – of disempowerment and
disconnection from others. Often the result of chronic trauma is
post-traumatic stress disorder, characterised by withdrawal, numbness,
apathy, irritability, emotional outbursts and impaired memory and
concentration.
If people with dementia have excess disability resulting from
post-traumatic stress disorder, maybe they could be helped to
overcome some of these reactions. I developed this thinking in an
34
article I wrote in 2001 and suggested that treatment strategies should
aim to empower us, encourage the creation of relationships, and
restore the capacity for trust, autonomy, initiative, competence,
identity and intimacy.
Morris, in an email to DASNI in early 2001, agreed, saying,
‘Post-traumatic stress disorder results from a dreadful experience or
catastrophe outside the range of normal human experience. The com-
bination of having a progressive incurable terminal dementing disease
35
and being diagnosed with it certainly qualifies.’
I think the key to helping us cope with the trauma of living with
dementia is to give us hope. Let us know we are unique, with our own
inner resources. We have our life story, which tells how we coped in the
past. And this affects how we can cope today. We can try to discover an
identity as a survivor of dementia and its diagnosis. Most importantly,
encourage us to be positive, to hope for a new life in the slow lane, as
we reach for the stars together.
Use it or lose it
We need to focus on enhancing our remaining abilities and compen-
sating for any losses, and maybe even working towards a new perspec-
tive of daring to try to recover skills, develop new talents, and create a
new future invested with meaning and hope.
Morris has been pioneering in his suggestions of rehabilitation for
a person with dementia.36 He suggests we first need to have hope in
order to overcome the trauma, and then to confront the why of the
disease. Then we need to think about what abilities we still have, and
move on from there in an attitude of child-like play to engage
problems, taking only one step at a time in the learning process, and to
persevere with the task. He says it is important that we validate our-
selves, consolidate achievements through repetition, and look to
respite as a reward.
The catch phrase ‘use it or lose it’ is painfully true in the case of
dementia. If we stop doing things, we will rapidly forget these tasks.
But the brain is a resourceful organ. Never underestimate its capacity
to try to find other ways of doing things.
Make sure we don’t give up, but don’t overtax us. We will get easily
exhausted, and need simple tasks that make us feel good about our-
selves. Give us time and space to try to keep doing as much as we can.
Don’t take over unless you really have to. Let us make mistakes or fail,
but don’t let us feel a failure. Encourage us and make us feel worth-
while, still useful and valued.
Is there perhaps some way you can help us carry on doing at least
some ordinary chores? Maybe signs around the place, colour coding
light and other switches, lists each day of steps to take for each task.
Don’t do it all for us – surely there is something useful we can still do?
We need help keeping our lives organised, being reminded of
daily activities, assisted with shopping, cooking, cleaning, dressing,
showering etc. But we will not be able to ask for all of this. We do not
realise we need it. Present information simply and clearly, with not too
many choices, and encourage us to function as a normal human being.
Help us make choices in small areas of our lives so that we feel in
control, and not pushed into things.
Maybe get us a diary, or simply a short list of things to do each day.
A friend in my support group had a poster pinned to his wardrobe
door, so that it was the first thing he saw on waking. It said, ‘Get up,
wash, shave, use deodorant, get dressed.’ It reminded him where he
was and what to do. Help us parcel out activities for each day, and
remind us about the day’s activities to get a sense of the day and date,
and to register what we did yesterday or last week. Even of we can no
longer read, you can talk us through our daily activities.
Perhaps think up some sort of ‘brain gym’ – reading children’s

books, magazines, particularly in the early stages, to keep us able to
cling on to these abilities. We might want to watch quiz shows, look at
newspapers, play board games or do crosswords. We might want to do
craft, needlework or art. Perhaps we would rather have walks in crisp
autumn leaves, or smell and touch beautiful flowers, or even have the
relaxation of massage and aromatherapy.
Maybe the golf club can arrange a buddy to play a round of golf
with us and keep our score and find our ball! I know of several keen
golfers who developed dementia and were no longer welcomed by
their golfing friends as they could no longer keep their score correctly.
But they delighted in being accompanied by a volunteer through the
Alzheimer’s Association who assisted them.
Another idea might be to help us to develop our life story, with
photos, business cards, favourite foods and so on, so that we enjoy
recapturing memories and have a resource alongside us as the disease
progresses.
But the key to all of this must be to make the most of our limited
energy budget. Please don’t try to make us do too much, or what is
really beyond our ability. What is the point of testing us to see if we
know the date, for example, as this will make us uncomfortably aware
of what we cannot do? What we need are a few selected activities that
help us feel that we can still accomplish things that are enjoyable and
meaningful for us.
Why wear us out with lots of activities, when maybe there is just
one thing that we would really like to do each day. One thing that
would make a difference in our life, and perhaps also in the lives of
others. Find out what our real priority is, and then manage our life by
helping with all sorts of other things so that we can focus on that one
thing we want to do.
Paul does a lot of the household tasks, such as cooking, washing,
shopping, planning and helping to write a list of things to do each day.
He also represents us at dementia groups, church activities, and other
things we are involved with. Now Paul is taking over the burden of
planning, organising and responding to requests, following up corre-
spondence, and reducing my activities in the dementia area. I have

asked him to do this to avoid my catastrophic stress reactions, when I
cannot sleep, when I shout or cry, when I feel unable to cope even with
the most simple enquiry.
I try to spend time with my daughters, listening to them and
sharing the important moments in their lives, as well as to try to keep
in touch with my DASNI friends, and make this last effort to share
about my journey with dementia. Paul has freed me to focus my
limited energy on what really matters to me.
Morris made this point very clearly, when he shared with DASNI,
‘One pet point I’d like to see made is ‘choose your battles’…[we]
function as well as we do because we are very conscious of and respect-
ful of fatigue. So often advice is blandly given to exercise the brain,
and the person wastes their precious resources on crossword puzzles or
37
trivial conversation rather than thinking thoughts that count.’
We can learn new things, in this journey to focus on what is impor-
tant, and what gives us a sense of meaning and self-worth. I have
spoken to my friends with dementia about this, whether they could
think of any positives from our diagnosis with dementia. Some talked
of time to be with family or animals, others about new challenges they
were able to take up, and about the healing of relationships.
In Christchurch, we all sat round as a group, and Frank Drysdale
from Australia amazed us all by sharing how he had an inspiration
from God to develop the game Numero, complete with the ideas and
38
rules for the game. It has been a great success in education world-
wide, and the profits have been donated to the Western Australia
Alzheimer’s Association. God can give us gifts and we need to use
them despite our dementia, and we may be able to help others even in a
small way.
I have learnt how to use PowerPoint for my talks, so have a major
sense of achievement. It took me a long time, and I am limited in my
use, but I feel good about myself. It has also been an excellent tool for
communicating about living with dementia, visually and with words,
in other languages and cultures. It is something I can point to as a
positive outcome of living with dementia.
All this effort at the computer, to try to keep reading, to keep active
in my thinking – it’s a bit like I’m a ‘brain athlete’ from doing all those
exercises. I’m keeping my brain working with a great deal of effort.
Maybe it’s a bit like being a wheelchair athlete, in that I feel as if I have
a very muscled 115-year-old brain. The anti-dementia drug bathes my
brain in a chemical messenger so that all the signals are much more
active, so could be called a ‘brain steroid’!
But of course, I can’t keep up this effort all the time. There are some
days when I say ‘It is all too hard. Why can’t I just forget everything,
forget taking the tablets, just be at home and rest!’ I find each day is
such a struggle. I’m sure athletes feel like that too, like giving up. Then
I think about the people with dementia that I see in day-care centers
and nursing homes, and the struggles they are having because they
can’t tell people what their world is like, so I have kept going, just one
more day at a time, to try to share what it is like for us.
Communicating with us
Touching our emotion and spirit
As we become more emotional and less cognitive, it’s the way you talk
to us, not what you say, that we will remember. We know the feeling,
but don’t know the plot. Your smile, your laugh and your touch are
what we will connect with. Empathy heals. Just love us as we are. Visit
us and just be with us if you do not know what to say. We don’t need
words so much as your presence, your sharing of feelings with us.
We’re still here, in emotion and spirit, if only you could find us!
We need you to listen carefully as we can’t repeat our words. We
struggle to speak and it often comes out in a very scrambled way,
without proper grammar and syntax. Please try to make sense of the
feelings we are trying to convey. The sense of being listened to, and of
being heard, will make us feel valued and in a relationship with you.
This is what we need as we cope with shattered thoughts and frag-
mented selves.
One thing at a time

I operate in a different way to you, and need a different type of interac-
tion, which is slower and more meaningful. People want to be busy, to
talk fast, to ask for responses, but I can’t cope with that. I need a restful,
calm environment, with no visual or aural distraction, to listen to what
you say and to be able to speak to you.
I won’t be able to concentrate on what you are saying and will get
very confused, so I need quiet time to restore my energy. Please don’t
play music or have the TV on when you are talking to me. If the TV is
on, please mute it first before talking to us. We won’t realise we need
you to do this, though, and may even complain. But one source of
sound is usually enough!
Connecting with us
Just because we can’t express ourselves very well does not mean we
have nothing to say. As our thoughts and words are tangled and
confused, you will need good listening skills, being attentive to
non-verbal cues. Take what we say in context, as the words and their
order will be wrong. Try to find the meaning behind the words as we
will make mistakes in tenses, words and grammar. Be sure we would
like you to help fill in the gaps in our struggle to find words and sen-
tences before you do so. Don’t correct us, just try to understand the
meaning of what we intend to say.
Don’t interrupt our thread of thought, but let us interrupt you
when an idea comes into our head, because if we wait, it will disappear.
Try the technique of reflective listening, where you repeat back what
we have said to you, not exactly, but repeat the meaning of what we
have tried to say. This will help ensure you have understood our true
meaning, and help us feel really listened to.
Give us time to speak, wait for us to find the word we want to use,
and don’t let us feel embarrassed if we lose the thread of what we say. I
remember one friend, George (not his real name) walking tentatively
into the room where we had recently started a small coffee group for
people with dementia, as an alternative to the day care centre. His wife
was most anxious about how he would cope with a ‘talking group’ as
apparently he could not really communicate any more, and might feel
upset in this group.
We started chatting about this and that, over a cup of coffee and
some biscuits. Soon I noticed George had sat a bit forward, and his lip
quivered, and he looked as if he wanted to say something. So I asked
the others to stop for a moment, and said ‘I think George wants to tell
us something. Go ahead, it’s OK, you’ve got plenty of time. We know
what it’s like to try to find words.’ And we just sat in silence for a while,
as he gathered his thoughts, and slowly started to speak. Every now
and then, we would stop talking again to give him the space in which
to speak and to be heard.
His wife came to collect him, and walked to the car, helped him in,
and then came rushing back inside. She gave me a big hug, and was
delighted. George had told her that he had enjoyed the morning and
since then he has gone again to the group a few times, and then on to
the day care centre which he had avoided before. Maybe we had
helped him feel less alone, more accepted, and given him permission to
feel words were difficult and confusing.
Try to avoid direct questions, which can alarm us or make us feel
very uncomfortable. Questions also make us feel pressured for the
immediacy we have lost. If we have forgotten something special that
happened recently, don’t assume we didn’t enjoy it. Just give us a
gentle prompt – we may just be momentarily blank. Even if we never
remember, surely the memory of the event is not what is important – it
is our experience at the time that really matters.
It is best to look at us, to make sure there is eye contact and that we
are attending from the beginning of what you say. Speak clearly and
not too fast. Slow down when you speak, so we can follow you, for we
will have gaps in reception and understanding – and the faster that you
talk, the more we will miss. Don’t shout at us, though – the problem is
often not our hearing, but our understanding. Shouting simply dis-
tresses us – for me it feels as if you are hitting my head, causing even
more confusion inside there.
Most importantly, don’t push us into something, because we can’t

think or speak fast enough to let you know whether we agree. Try to
give us time to respond – to let you know whether we really want to do
it. Being forced into things makes us upset or aggressive, even fearful.
Look behind our behaviour to its meaning, as we communicate
with you in this way. You can enter our reality, accept more emotion
and feeling, and connect with us at this level as our cognition fails and
inhibitions decrease.
Touching us, to connect with us, may be helpful. Many of us may
not like to be touched by people we do not know, but find it therapeu-
tic to be touched by people we do know. Stroking is an important part
of touch, and I find it lovely to touch and to stroke, and to be touched,
to connect in this way.
When in Japan, I visited a day care centre in Matsue, and it was
lovely to kneel in front of each person, take them by the hand, look
them in the eye, and speak quietly with them. Even the lady who could
not speak or see squeezed my hand in recognition of my presence. She
was communicating with me in that way.
Observing us will be the key to knowing what we are saying to
you. Most of our communication is non-verbal. Our facial expressions,
our hand gestures, and the context in which we are trying to communi-
cate with you are all important. How will you know that we are in pain
when we can no longer speak? What if I have earache and can’t tell
you? With my cat, I can tell when her ear hurts by looking at her
behaviour – she might shake her head, have her head on one side, and
look miserable. She has ‘told’ me all I need to know about her earache.
Goldsmith has summarised beautifully how to improve communi-
cation with people with dementia:
• provide a restful environment
• be calm, reassuring and relaxed
• approach the person within their line of vision and identify
yourself, maintaining eye contact at the same level
• use touch where acceptable to the person
• speak simply and slowly, but respectfully

• allow time for understanding
• be a good listener, allow pauses and look for meaning
behind words
• use short sentences without double messages
• illustrate what you are saying where possible, with aids
such as photos
• try to follow what they are saying, do not correct mistakes
nor laugh at inappropriate responses
• be complimentary where appropriate
• do not be embarrassed by displays of emotion.39
Living with stigma

Do what you can to prevent the stigma of dementia. We people with
dementia have two burdens from our disease. The first is the struggle
with the illness itself. The second is the battle we have with what I call
the ‘disease of society’. Dementia, and the type of dementia called Alz-
heimer’s, are a disease of society as much as they are a disease of a
person.
Hazel Hawke, former ‘first lady’ in Australia, who has been diag-
nosed with Alzheimer’s Disease, said, ‘Ridicule is terribly hurtful to
the sufferer and it doesn’t serve any purpose… Alzheimer’s…is kind
of shameful, it’s embarrassing, you’re losing your marbles.’40
Stigma is a social issue separating the world into two perceived
compartments, by labelling and lack of understanding: that of
dementia, and that of ‘normals’. This is the stigma we face, where the
stereotype and myths surrounding dementia perpetuate an attitude
that isolates us, into a separate, walled compartment of dementia.
Until this wall created by stigma is removed, people will not seek
help, nor even seek a diagnosis, and then they will be denied the treat-
ment and support that is available to them. Living with dementia, we
need to be free of stigma to feel respected and empowered, and to

know we can live a new life in the slow lane.
I found that when I read a book describing the difficulties of
people with mental disability by James Dudley, I could easily replace
41
‘intellectual disability’ with the word dementia. We too ‘live within a
complex web of social encounters that are tainted with stigma…
[which] like racism is pervasive and endemic to [our] existence’.
Our world becomes circumscribed by the stigma of our illness. We
want to retreat in shame, and do not want to ‘come out’ and tell people
the diagnosis. It’s not surprising that some of us react by denying
anything is wrong, and our families do too. Better to pretend at
normalcy than to face up to the challenge of dementia.
If we do believe the lie of dementia, that we can’t learn new things,
remember anything reliably, or find our way around, we are blind-
folded to our own potential. We withdraw into helplessness and let
our families take over. Our inner world is in turmoil as we suffer antici-
patory grief at loss of self. We may become overwhelmed by feelings of
anxiety, anger, sadness, fatigue, shock, helplessness and numbness as
we try to come to terms with losing ourselves as well as others.
Please don’t call us ‘dementing’ – we are still people separate from
our disease, we just have a disease of the brain. If I had cancer you
would not refer to me as ‘cancerous’, would you?
Our labels seem to mean so much – am I Alzheimer’s Disease or
fronto-temporal dementia, or simply someone with a ‘dementing
illness’? All these terms label us as someone without capacity, without
credibility as a member of the community. How about separating us
from the illness in some way? How about remembering we are a
person with progressive brain damage?
Be very alert for discrimination against people with dementia.
Treat us like a normal person and never speak about us in the third
person when we are there. Don’t criticise, find fault or laugh at us, or
speak as if we are no longer there, and certainly do not do everything
for us. Respect us and realise how hard we are trying to cope.
Don’t categorise us in terms of stages of the disease. This is mean-
ingless at the individual level. Our cortex is wired up according to our
own unique learning and experience, so we vary in how we react to

damage in any area of our brain. We need to be treated as an individual,
with unique capabilities.
Focus on our abilities not our deficiencies. Treat us as a person,
never a statistic, and involve us in life. Help us to continue activities
that we enjoy – whatever will help us to feel valued, appreciated, and
still part of society.
Dementia-friendly environment
Our environment is a critical part of our disease. How we exhibit
symptoms will very much depend on our environment and how well
we can cope with it. We need love, comfort, attachment, inclusion,
identity and occupation as our world around us becomes strange and
our ability scrambled.
The importance of the person’s environment in coping with the
experience of dementia has been the focus of work by Kitwood42 who
made a detailed study of the impact on the manifestation of dementia
related to the institutional care environment. He suggested that
dementia arises from a complex interaction between various factors
unique to the person, which would explain the great variability of
symptoms and progression of losses that accompany any particular
type of dementia in different people.
First there is the personality, or resources for action, including a set
of avoidances and blocks acquired through life’s experiences of
failure, fear or powerlessness, accompanied by various defences
against anxiety. Next is the biography, or life story, including all losses
and current social support. Then there is physical health, including
sensory function, which may affect the degree of confusion and ability
to communicate. These all affect the way the person copes with the
actual brain damage.
The most important factor for improving care is the environment,
as this can be changed quite easily to ensure that it enhances the
person’s sense of safety, value and well being. It needs to validate the
person’s experiences and emotions, facilitate the person’s actions, cele-

brate the person’s abilities, and provide sensory pleasures.
But sometimes the family home is where past conflicts, present
tensions and well-worn patterns of behaviour may profoundly affect
the expression of dementia. Please try to make sure you get help, to
address any underlying emotional issues. As emotional beings, we are
buffeted by our environment, with few cognitive resources to cope
with stress. So we are very susceptible to our environment and to any
family dysfunction. We cannot cope with stress, tension, arguments or
unease around us.
As environment is so important to the expression of dementia,
there is a great deal you can do to help. How we exhibit symptoms will
very much depend on how well we can cope as the world around us
becomes strange and our ability scrambled. Our behaviour is usually a
perfectly reasonable response to our environment given the degree of
brain damage we have.
Avoid background noise, which will make me tired and confused,
anxious and even aggressive. A quiet environment helps avoid addi-
tional confusion. I wonder why so many day care centres and nursing
homes have a TV, radio and talking all happening at once? No wonder
the people sitting there look so blank! Maybe think about ear plugs for
a visit to shopping centres or other noisy places.
If children are underfoot, remember we will get tired very easily
and find it very hard to concentrate on talking or listening as well.
Make sure we face away from any visual disturbances, and that we are
in a quiet place.
Encourage routine so that we can feel safe and secure in a familiar
environment, with a set of activities that we can recall. This will reduce
the stress of trying to make sense of our surroundings.
Make our spaces uncluttered, particularly in areas like the kitchen
and bathroom. Use a combined shampoo and conditioner so there are
not too many bottles. Try to have a shower that is easy to get into, and a
tap that only has one control, and no very hot or cold water.
We may have difficulty in vision and coordination which mean we
might knock things over and feel clumsy. Decanting things into plastic
containers might avoid breakages. If we do knock things over, and

stare blankly at the mess we have made, please help us clear up, as we
can’t think through the steps needed, and get flustered and confused.
The entry and exit doors to toilets in public places, such as
community centres, are a real challenge. They never seem to be painted
a contrasting colour, so that we can find our way in and out of the
toilet. There can be so many doors in there to confuse us, and our
care-partner may not be able to go in there to help us. Whenever we
have gone out with groups of people with dementia, this is always an
issue. Someone is late coming out, and you hear doors banging as
someone tries to work out which door is the right way out of the toilet.
If only the entry and exit doors were a contrasting colour to all the
other doors, we wouldn’t get as confused and might be able to go out
more often!
Enter our reality

Our reality can become caught between dreams and daily life, because
between sleep and awake is another world – a terror-land of illusion,
inhabited by dark shapes, real feelings, but an inability to move, or
speak, or escape. So what is real, what is true?
Dreams are very vivid, because our sleeping mind is trying to
master the waking confusion resulting from our damaged brain and
our high level of emotions. But our memory for what has really
happened is so poor that it is so difficult to recall what is dream and
what is not. If we get up during the night, and are caught still in this
twilight world, we become disoriented and distressed.
Some of us find animals – real or stuffed – help us to visualise
concepts such as peace, hope, faith, comfort. Touching their reality can
soothe us in this struggle for sleep, as well as in the struggle to know
we are awake. My cat is a constant source of comfort during the night,
when I wake up frequently and wonder where I am. Her warm, furry
and purring body, lying alongside mine under the covers, responds
with a little stretch and a small sound whenever I wake up and reach
out to touch her during the night. Then I hear the gentle breathing of
Paul beside me, and it reassures me and comforts me, reorienting me to

the reality of my bed.
But a stuffed animal can cause alarm! We can mistake what we see
so easily. It’s like lots of pixels being missing, so we try to make up a
picture from a blurred image. My DASNI friend Morris told me that he
was out shopping one day, but had to muffle a scream as he walked to
the check out. There was a dead cat in his shopping trolley! But as he
tried to calm down, and focus more on this terrible sight, he slowly
began to realise that it was his own fur hat that he had taken off half an
hour before, when he started to do his shopping. Our brains try to
make sense of what we see, but it is not always real.
I have seen little stuffed puppies that are very life-like, which have a
mechanism inside them like a warm beating heart. I have sat talking to
Michelle in her office at the Alzheimer’s Association stroking one of
these, feeling calmer by the moment. I would love to have one of these
later in my journey, when my ‘dementia cat’ can no longer minister to
my needs. But perhaps battery-driven mechanisms could be a problem.
I heard that in Japan, when dolls with battery-operated hearts were
trialled, former midwives at the nursing home became very distressed
when the battery stopped working. Their ‘baby’ had died, its heart no
longer could be felt. So if I do have a ‘beating-heart puppy’, please
check the battery regularly to make sure it is still ‘alive’.
These midwives were lucky to have someone able to interpret
their apparent delusion, their paranoia, and stress reaction. But such
paranoia and delusions are a natural part of us trying to make sense of
an increasingly confusing and stressful environment. We create our
own stories to explain what is happening. We become non-diplomatic,
focused on our own firmly held beliefs as to what is happening around
us.
As Victor Frankl, a Holocaust survivor, has said, ‘an abnormal
43
reaction to an abnormal situation is normal behaviour.’ For people
with dementia our behaviour is normal, considering what is happen-
ing inside our heads. Try to enter our distorted reality, because if you
make us fit in with your reality, it will cause us extra stress. You need to
enter into our reality, connect with us by touch, or by look. You need to
be authentically present, not far away. You need to realise that we are
not far away or lost, but trapped by an inability to communicate and to
think clearly, to express this strange mixed-up world being created by
our brain damage. Think about this inner reality that we are experienc-
ing, and try to connect with it. Be imaginative, be creative, try to step
across the divide between our worlds.
I was visiting a dementia unit in a nursing home, and used to chat
with Maureen (not her real name). She could not express herself in any
language I could understand, but had created a way of talking that
others called ‘gibberish’. For her, it was a way to speak out sounds, to
express thoughts, fears and feelings. One day, when I went to visit,
Maureen was clearly very agitated, and she took me over to the walls
near the kitchen area. She pointed out, low to the ground, lots of
things, moving – they seemed to be all over the place for her. I said,
‘Are there lots of mice here?’ Her face beamed. ‘Yes!’, she was saying to
me, by her ‘words’ – her facial expression and her gestures. As we
walked along the corridor, it was clear that there were mice every-
where. Of course, I could not see them, but that did not make them any
less real to her.
So I said, ‘Let’s look for the cat, there must be one around here.
Surely the cat will chase away all these mice.’ Then we walked around
for a while, until excitedly Maureen grabbed my arm and pointed. By
her face and the way she made sounds, I could tell she had seen it.
There was the cat! And soon she had calmed down, the cat and the
mice left her world, and she was able to settle back into the routine of
the day.
It is so important to enter into our reality, which is created through
scrambled emotion and little cognition, and held together through our
spirit, our true self. Our reality may well reflect our emotions, and may
tell you something about our worries or our joys, so that you can help
us move forward from an unpleasant space, or help us reflect on a
happy moment.
Of course, this entering into our reality is far easier to do for those
who have some greater emotional distance from us. For our close
family members, it is so hard to observe what appears to be a greatly
distorted reality, and to react by focusing on the needs of the person

with dementia, rather than their own needs in this intimate relation-
ship. This needs to be recognised and to be respected. Professional
care workers can do a great deal to relieve our distress, as well as that of
our families, by helping in this area of need.
Care-partner, not martyr

Adopting a sole identity as our care-giver highlights our illness and
strips both of us of other identities, we have become care-giver and
sufferer, in a relationship of co-dependence. You need us to be sick so
that you retain your identity as care-giver, otherwise you might feel
threatened if we become empowered in any other role.
In this role, you may feel soon overwhelmed by the multitude of
tasks, of remembering for two, of planning and organising for two, of
covering up our deficits, and grieving over our losses, rather than
looking for what remains. You can quickly become exhausted, sad,
depressed and in despair. We know how hard it is for you, and we
treasure all that you do for us, and know how helpless we have
become, but we want the best for you too.
At the same time, if we adopt a sole identity as a sufferer of our
illness, we learn helplessness. We lose more function, and show an
excess disability, where more dementia is apparent than you might
expect from the amount of brain damage we have. This will only add
to your burdens as a care-giver, and exacerbate the problem for both of
us. It will be a downward spiral to disaster. In this situation, we have
become co-dependent, needing each other to accept our labels as
victim and sufferer for our identities.
Alternatively, we might cover up our deficits and try to act as if we
are normal. This too is a form of co-dependency, because we have put
your assumed need ahead of our honest self expression. We want to
stop you worrying, to stop this downward spiral, and we pretend at
normalcy. But as the disease progresses, we can’t keep up this pretence,
because it becomes impossible and exhausting, and we become passive
and dependent. Suddenly you are faced with the burden we had tried
so hard to hold away from you, alone.
Co-dependency is unhealthy for both the person with dementia
and their family. We can become more incapable than we really are,
and you can become much more exhausted than you need to be. And
neither of us is being honest, each of us is journeying alone with
dementia, struggling without any true insight as to what to do.
We need to move away from labelling ourselves as care-giver and
sufferer, towards becoming a care-partnership, in which we accept,
collaborate and adapt to new roles within the journey of dementia. I
can become a survivor, a person with dementia, and you can be my
care-partner on this journey. I can be a care-partner with you, commu-
nicating my true feelings, my true needs, so that you can walk along-
side me adjusting and compensating for these expressed needs as we
face this struggle together. In this care-partnership, the person with
dementia is at the centre of the relationship, not alone as an object to be
looked at, as merely a care-recipient. Instead we become an active
partner in a circle of care.
Care-partners – family, friends, professionals and governments –
should actively seek to understand the person’s needs, take full
account of existing capabilities, and adjust care levels according to
those needs. Listen to us as we try to express these needs and abilities.
That way we can dance in celebration together and embrace our
shared future.
Spirituality
In the face of declining cognition, and increasing emotional sensitiv-
ity, spirituality can flourish as an important source of identity. And yet
the stigma that surrounds dementia may lead to restrictions on our
ability to develop our spirituality. It threatens our spiritual identity. As
time passes, I will need others to understand me, to understand that my
odd behaviour, my lack of social graces, my lack of resources to offer in
friendship, do not stem from the soul that lies within me. Rather they
are simply the product of my diseased brain.
But it is sometimes assumed that our confusion, our lack of speech,

and apparent lack of understanding, place us beyond reach of normal
spiritual practices, of visiting shrines, worshipping alongside you, and
being in communion with God and with others. But to what extent are
these assumptions due to the limits placed upon us due to the stigma of
our dementia?
You can help us rediscover a sense of meaning in our lives, by
finding out what type of activities help us to see beyond the transient
worldly difficulties of coping each day with brain damage. By practis-
ing our spirituality, we may be able to achieve an identity reflected in
the divine, to find emotional security and to discover a real hope in a
new future.
Liz MacKinlay has described what she calls the six spiritual tasks
of aging, which are equally relevant in dementia: to search for ultimate
meaning in life, to respond to that meaning, to move towards final
meanings, to find hope, to find intimacy with God and/or others, and
44
to transcend difficulties and losses.
It is important that you find out what our own spiritual tradition
has been, and to help us to reconnect with the rituals, the stories, the
places, the practices. As a relatively recent Christian, I am not as
familiar with the old hymns, but love the new choruses, and more con-
temporary church worship. I would feel very uncomfortable at a very
traditional Christian service, or in another type of religious setting. We
need familiar words, tunes, languages and ritual – but ones that are
familiar to us, not necessarily to you.
But spirituality is not merely religion. Spirituality is what gives us a
sense of meaning and purpose in life, and this may well come from art,
nature or music. For me, I treasure nature, I love cats, and I delight in
watching all animals in this beautiful creation. It is vital to find out
more about the unique individual who has dementia, about their pref-
erences, and then find ways in which this person can be spiritually
nourished.
Minister to our true self, which lies beyond cognition and
emotion. Perhaps we can be encouraged to write about ourselves.
Certainly for me writing my first book was a very important journey of
self reflection. When I visited a day care centre in Matsue, I heard some
wonderful stories from people about living with dementia, which
expressed their true inner feelings and hopes. I could see by their faces
what it had meant to them to be helped to write these personal stories.
There are many ways to help us find meaning in our lives. We can
be comforted by doll therapy, and I have seen many photos of sheer
joy on people’s faces – men and women – as they hold their doll. We
can be inspired by art or music therapy. We need you to reassure us and
to be with us as a guide, as you reach into our spirituality and find ways
for us to connect with the divine. Maybe you could use pictures,
objects, songs, rituals, activities, places.
Dementia has often been associated with a ‘loss of self ’ and this
implies the person travelling the journey with dementia at some stage
loses what it is to be human. This is clearly silly, as at what stage can
you deny me my selfhood and my spirituality? Exactly when do I cease
being me?
I gave a talk at a conference a few years ago, and Liz MacKinlay
45
later edited the paper as a chapter in a book. I said, ‘Is cognition the
only measure of our presence amongst you as spiritual beings? Cer-
tainly my capacity for accurate communication of thought is diminish-
ing daily. It is difficult to find the words for the pictures in my head so
as to communicate with you. Does this mean my mind is absent?’
I asked, ‘Even if these pictures may one day themselves fade, is my
soul connected with this failing cognition?… As I lose an identity in
the world around me, which is so anxious to define me by what I do
and say rather than who I am, I can seek an identity by simply being
me, a person created in the image of God. My spiritual self is reflected
in the divine and given meaning as a transcendent being.’
I am daily losing more and more bits of my temporal lobe, yet I
have read that electrical stimulation of the temporal lobe gives intense
spiritual experiences. Does this mean my God-experience will in some
way fade, and my spirituality will disappear? Surely not! I am much
more than a diseased brain.
In my talk I said, ‘My creation in the divine image is as a soul
capable of love, sacrifice and hope, not as a perfect human being, in
mind or body. I want you to relate to me in that way, seeing me as God

sees me.’
46
Will I know God if I can no longer remember? In my first book I
wrote ‘As I unfold before God, as this disease unwraps me, opens up
the treasures of what lies within my multi-fold personality, I can feel
safe as each layer is gently opened out. God’s everlasting arms will be
beneath me, upholding me.’ As we people with dementia lose our
memory of who we are, we become reflected in others. In the family of
God, the body of Christ, I am what others remember of me.
I need you to relate directly to my spirit, and as I travel this journey
of dementia, I will rely on others increasingly to support my spiritual-
47
ity. There is no stage in this journey at which you must abandon all
hope of connecting with me, as we can remain linked through our
spirits – not our minds. You can minister to my spirit in song, prayer,
ritual, and by your spiritual presence alongside me.
You play a vital role in relating to the soul within me, connecting at
this eternal level. Sing alongside me, touch me, pray with me, reassure
me of your presence, and through you of Christ’s presence. Be creative
and trust in God to help you bring his love to me. Identify where I find
meaning in life, to discover and enrich my spirituality. Through this I
can find spiritual healing and transcend my sense of loss and fear.
For you to connect with us spirit to spirit at this level requires sensi-
tivity to what gives us sense of meaning, what faith tradition, what
ritual, what worship practice. Focus on the reality of the present, the
simple joy of creation. You can reach across cultures, across faiths, by
touching our spirit in ritual, nature, song, music, dance, or other ways
to connect us with the ground of all being, the divine.
4
I Know Who I’ll Be

When I Die
An identity crisis!
T he dementia script – the shock of diagnosis and horror of

prognosis – is a turning point in our lives. That moment is etched
in our memories. What the weather was like, what people were
wearing, and what people said emerge from the fog of our distorted
memories as one clear crystal picture. For some of us it is a relief. At last
there is an explanation for our confusion, slowness, memory loss and
daily difficulties. But we must still face up to what the future now
holds. For others diagnosis leads to disbelief. There is nothing wrong
with us, surely! No one can think we are anything like those people in
nursing homes, who don’t know who they are or who their families
are?
And for others, like me, it is a time of trauma. I faced an awful
awareness of my future, of what lay ahead for me and for my girls. I
would have to stop work, and would still need to support the family.
My world had collapsed. Everything had changed. I faced a defeat of
spirit and of hope.
155
Our main fear is the ‘loss of self ’ associated with dementia. We face
an identity crisis. We all believe the toxic lie of dementia that the mind
is absent and the body is an empty shell. Our sense of self is shattered
with this new label of dementia. Who am I, if I can no longer be a
valued member of society? What if I don’t know my family, if I don’t
know who I am and who I was, if I don’t even know God?
Our first thoughts after diagnosis often turn to who we are and
who we will become. We face an identity crisis. We have a fear of the
future, a fear of decline, and a fear of death in a state of unknowing. We
can no longer be defined by our work, our contribution to the commu-
nity, but have a new identity thrust upon us as a diseased person – no
longer valued by society, no longer needed for making any contribu-
tion. Suddenly we have become a non-person.
The day before my diagnosis I was a busy and successful single
mother with three girls, and a high-level executive job with the Aus-
tralian Government. The day after I was a label – Person with
Dementia. No one knew what to say, what to expect of me, how to talk
to me, even whether to visit me. I had become a labelled person,
defined by my disease overnight. It was like I had a target painted on
my forehead, shouting out for all the world to see that I was blind-
folded, no longer able to function in society.
But we can find a new identity as an emotional being. We can hug,
we can have cuddly toys once more, we can cry and express pain more
freely. In our relationships, we can connect at a deeper level. We have
inner psychic resources that arise from our personality and life story.
These resources – our attitude – affect how we cope with brain
damage. For some of us, of course, our life story offers us no resilience,
no help in tackling this latest battle for existence. Our resources are
minimal, and we have little to draw on. But if we give up, we appear to
have a greater degree of dementia.
Importantly, even beyond our psyche, our emotional and psycho-
logical reactions forged in the crucible of life, each of us has a spiritual
self. Even without words for the pictures in our mind, and without
being able to draw on some sort of inner strength, we can find
meaning in life in our own spirituality. This is where you can minister
I KNOW WHO I’LL BE WHEN I DIE 157
to us, connect with us and empower us. My Christian faith, my spiri-

tual relationship with God through Jesus, certainly strengthened as an
important source of my identity, despite the fear of ceasing to be.
It is what lies right at our spiritual core that is truly important, and
this can be ministered to with sensitivity to what is giving us meaning
in our lives with dementia. ‘It is only with the heart that one can see
48
rightly; what is essential is invisible to the eye.’ With this phrase,
Antoine de Saint Exupéry expressed the importance of our inner self,
our spirit self.
The fear of ceasing to be

During my first two years of living a life transformed by this label of
dementia, I felt shame and retreated from society. I had a terrible fear
about my future, how would it feel to die with this disease? I was
encouraged to write about these feelings, and wrote my first book. My
biggest fear was the later stages when I will not know who I am, who
my family and friends are, and maybe even not know God.
We face this awful fear of ceasing to be. It’s not just a physical
death that we face, but also a gradual emotional and psychological
death. It’s journey into ceasing to be. In some ways you can prepare
yourself for death, knowing who you are and how you will be likely to
cope with this. But with dementia it is so different. I was terrified that I
wouldn’t know who I was, who anybody was, that I would be totally
lost and not able to cope with death. And this fear is set in the midst of
a struggle to retain a sense of who we are now, let alone who we were,
or who we are becoming.
Fear can transform us into deniers, when we pretend we are well
and nothing is wrong. The fragile shell of normalcy protects us from
our fears. And our family and friends deny there is a problem, as a
defence against their own feelings of grief and anger. Or we can
become victims, collapsing into a paralysis of fear, giving up our will-
ingness to keep trying to function. And our family and friends adopt
the new identity of care-givers, smothering us with their concerns and
taking over our daily lives.
But we can find a better way of reacting with realism to the diag-
nosis, by reflecting on the totality of who we are. We are far more than
a cognitive self. We are emotional beings with relationships in this
world with others. We are spiritual selves in relationship with the
49
divine. Martin Buber writes, ‘Through the Thou a person becomes I.’
Through the centering of my life, by focusing on my spirit in relation-
ship with the divine, I am becoming who I really am.
The challenge is to draw on our psychic resources to step across
that yawning chasm of fear that opened up at that moment of diagno-
sis. How can we live in a world of hope, alternatives, growth and possi-
bility, when dementia threatens our sense of self ?
We need to create a new image of who we are and who we are
becoming. How we do this depends very much on our personality, our
life story, our health, our spirituality, and our social environment. We
can choose the attitude we have, and some of us, like Frankl, can try to
look for meaning in our lives through the attitude we take toward
unavoidable suffering.
It has been a long journey for me since 1995 to learn how to live
positively each day with my diagnosis of dementia, when I questioned
who I will be when I die with dementia. Now I realise that I will still be
me, my eternal self which is my spirit. My spirit is me and will always
be me. Even through the ravages of dementia, my spirit will remain
intact and continue to be the primary way in which God works within
me. I can survive this disease with dignity, confident that God sees my
spirit – the true me. My spirit remains my mainstay, as I travel this path
of making meaning in life, and of discovering the glory of God
within me.
Who am I becoming?
The journey of self discovery
My journey with dementia has been a journey of self discovery about
who I really am. My first book asked ‘Who will I be when I die?’ It
expressed the fear of ceasing to be, and assumed that the journey of
dementia was somehow a loss of self. But over the last few years, I have
done a lot of thinking about what makes up a person, and what is hap-
pening to us as we journey into dementia. Dementia is often thought
of as death by small steps, but we must ask ourselves what is really
dying. Hasn’t the person with dementia reached that place of ‘now’, of
existing actively in the present?
I believe that people with dementia are making an important
journey from cognition, through emotion, into spirit. I’ve begun to
realise what really remains throughout this journey is what is really
important, and what disappears is what is not important. I think that if
society could appreciate this, then people with dementia would be
respected and treasured.
There is the cognitive outer self, which is the self – the mask – that
we are presenting, when we are at work or at home. Organising,
planning, writing, speaking, shopping, cooking, all sorts of complex
activities make up what we think is who we are. We have labels for our-
selves, names, jobs, addresses, memories about our past, ideas for our
future. We communicate these as part of defining our outer masks.
When we meet each other, it is a description of our masks that we seek
when we say, ‘What is your name, where do you live, what do you do?’
But there is another layer just beneath, an emotional layer, that
defines the way we relate to others. That is the mask that I use when I
relate to Paul and to my daughters, or speak to my friends and family.
And that is how I show my feelings. This emotional layer is becoming
more and more scrambled in our journey with dementia. It is less pre-
dictable, we are less in control, and our feelings are more disjointed.
Beneath this increasingly jumbled layer of emotion is the true self
that remains intact despite the ravages of dementia. This is my spiritual
self or transcendent self. It is the ‘me’ that relates to the beauty of a
garden, of the leaves or the flowers; it is the ‘me’ that relates to God; it
is my spirit, the essence of me.
This real self cannot exist independently in our society, which
defines people by the outer layers of cognition and emotion, by our
masks. I couldn’t survive in society without Paul, despite living an
authentic life in the present, as a spiritual self, because today’s society
expects you to function like a ‘normal’ person, with a past, memories,
and a knowledge of what day it is and what you should have done,
what you did yesterday and what you are going to do tomorrow.
My spiritual self exists in the ‘now’, with no past or future. The
Buddhist word setsuna captures this sense of existence independent of
time. We can more fully appreciate the divine, which is outside of time,
50
as the ‘now’ which is the ground of all being.
Living in the present is where our true self is. If we get too anxious
about what might happen or what used to happen, we are really in our
outer shell of ourselves, and that’s not really us. I’ve come to the accep-
tance of living in the present, and realising that it is a very special privi-
lege to be released from memories and future worries.
Like a bud, my true self encapsulates all the potential of what it
means to be me, in an eternal realm, not only in this earthly temporal
existence. This being in the present, continually and eternally, is a new
way of living, maybe even the essence of living.
Zen mind is ordinary mind

A meditation written by Morris from DASNI captures this essence of
living:
The rain had washed clean the air, and the sky was now filled
with fluffy clouds. Walking along the gravel road I watched
three deer, two big ones and a little one, gracefully climb the
sunlit hill and disappear over the top. I thought about medita-
tion. I remembered how, before Alzheimer’s, I used to think
about meditation from time to time.
Zen Buddhism pointed out that the mind was like a chat-
tering monkey swinging from branch to branch, from anxious
thought to greedy thought. How much quality of experience
could one have with a mind like that? The path of meditation
offered to silence the mind, making it like a still mountain
pool reflecting the moonlight. With such a mind one could
savor the ecstasy of Now. That was an interesting idea.
My monkey mind went south three years ago. This would
perhaps be a great advantage for meditation, except that my
ability to concentrate has gone as well. I can no longer hope to
cultivate mindfulness until, with lightning discernment, I can

instantly perceive the Illusion at the core of grasping thoughts
and, like a samurai laser swordsman, vaporize them into
Emptiness. In a couple of years I’ll be lucky to have enough
mindfulness to cook a frozen dinner in the microwave.
So when I looked at the deer, I thought, ‘I’ll never see
them any better.’ But, strangely, this thought was not depress-
ing. I sensed that images of the silent mind had ceased to
grasp me, and having abandoned hope of the ecstasy of Now,
I understood what the Zen Masters were trying to get at. Zen
51
mind is Ordinary mind.
I’m becoming who I really am!

As we journey towards our spiritual self, as our outer masks decrease,
our inner self increases. Cognition is fading, emotion and spirit are
increasing. We can be strengthened in our spirit as we make this
journey with dementia.
My DASNI friend, Shirl Garnett from Australia, said recently in an
email to me,
I think the most releasing realisation I came to early in my
journey with dementia was that, the further I progressed with
the physical/psychological decline the more my spirit man
increased in proportion. My relationship with the Lord, while
good before, has become even closer and I know that, no
matter how far I go in this journey I will retain my relation-
52
ship Spirit to spirit.
She wants people to ‘realise how important that spiritual relationship
53
is in navigating the waters we find ourselves in.’
I have learned to trust in God, and to watch in amazement as he
unfolds my life before me, as I take each step in faith. I find the Berber
saying that ‘Life is a loom on which God holds the threads’ speaks to
54
me, as I let God work in my life. By walking in trust each day, an
amazing tapestry of life is being laid out before me, and as I look over
my shoulder I can see a beautiful picture emerging, a meaning for my

existence and a purpose for my life.
Since writing my first book, and grappling with the fear of ceasing
to be, I have worked through what it means to be ‘me’, and have been
able to answer the question it posed. I realise what it is that I am losing,
and what will always remain. I now know that in this journey towards
my true self, with dementia stripping away the layers of cognition and
emotion, I’m becoming who I really am.
It’s a totally different way of thinking from when I was first diag-
nosed, when I started my journey with dementia. I am no longer the
outer layer, the outer mask, of who I used to be, which was the
working mother of three daughters, the family concerns, home life
and work issues. Instead, I am revealing more of the inner person. This
person existed back then, but she was obscured by the masks of
achieved cognition and controlled emotion.
I am more emotional now. Before becoming ill, I was always calm,
cool and controlled as well as controlling. I never really connected
with people at the level of their feelings. I was task-oriented, with my
emotions restricted to my daughters. Now my emotions are more
open, and I have more concern for people’s feelings. I relate more to
the whole person, rather than simply the outer mask.
It is interesting to read Viktor Frankl describe the psychological
55
journey made by survivors of the trauma of Auschwitz. From illusion,
denial and anger as first responses, through to apathy and humour as
defences, people eventually found inner peace in the spirituality of
religion, art and music. For people struggling with the journey of
dementia, it is a similar path of survival, of illusion, denial, anger,
apathy, humour and a search for meaning. We are following a path of
suffering to find the inner person, the true spirit self. In the prison
camp of dementia, in the trials of our daily struggle and the horror of
what is to come, we can find meaning in suffering.
What we find is that each one of us can say, ‘I am who I am, not
what I say or do’. Who I am is defined by my spirit. In life, cognition
and emotion may change, but our spirit is our essence, held in the grip
of the divine. Our spirit was known before we were in our mother’s
womb, and will be known long after we have become dust. It is a

journey into simplicity, one that moves away from the outer mask of
cognition. This is the façade we present to the world, of what we do,
where we work or live, how we speak and the ideas and views we com-
municate in words to others.
The next layer of this complex self is emotions. Here lie our
feelings, our love for others, our hurts and hopes, our relationships.
This becomes increasingly scrambled in the journey of dementia, as we
experience emotions in an unpredictable way.
At the centre of our being lies the true self, what identifies us to be
truly human, truly unique, and truly the person we were born to be.
This is our spiritual heart, the centre from which we draw meaning in
this rush from birth to death, whenever we pause long enough to look
beyond our cognition, through our clouded emotions into what lies
within.
For the person with dementia, this is what remains intact, it is what
makes us who we really are. One day my body will be in the foetal
position, curled up, unaware of my surroundings, barely able to
function, but my spiritual self will live on, my spiritual connection
with this body will be stepping away into a new life. Heaven is where
I’m headed.
Dancing with dementia

My journey into the spirit is freeing, but I am still living in a cognitive
world. Daily life is a struggle. It would be easier just to be. But I am
surviving this journey with dementia and, rather than fighting the
disability, I am adapting to it in a dance. As each decline becomes
apparent, I let Paul know, and together as a care-partnership, we work
out a way to change our behaviour.
The situation is changing every few months, something that is
different in the way we manage our lives, just little things, but
noticeable. We adjust to change, in the dance with dementia, which
has new music being played all the time as I decline and communicate
my needs. Paul needs to make a new dance step, I make a new step, we
follow or lead, and it is a compromise. The dance of dementia is not an

easy one, because dementia in many ways is a disease of society, where
the person and their family is isolated by stigma. It’s not much fun.
My family was shattered by the trauma of my dementia, but now in
this journey I think we are discovering new dimensions of each other.
Maybe we are rising like a phoenix out of the ashes of that terrible
time, and I think we are all more mature as a result. In a special way,
Paul as a care-partner has come into this dance much later, and chosen
to make this journey alongside me and my daughters. He does not
have the pain of the past to deal with, the grief of losses and the contin-
ual comparison of the person I am now, to the person I seemed to be
before diagnosis.
For my daughters, it is a more difficult dance, which they did not
choose to join, but were forced to participate in. They have losses to
grieve over, and issues to deal with. Their future is changed now, and
they must adapt to the idea of a mother who is losing cognition and
becoming more scrambled emotionally each day. They must also
address their fear of what happens later, in the end stage, when little
remains except my spirit self. But in the dance of dementia, I hope that
they too will find the connection with me, spirit to spirit, and be able
to hear the music of change, and adapt to me becoming who I
really am.
I’m choosing an attitude of dancing with dementia. I’m choosing
to be a survivor. I’m choosing to live my life positively everyday. I love
the imagery of a couple dancing with dementia. It’s a couple, a
care-partnership, in which we move together. We sense each other’s
needs, and change and adapt according to the changing music of the
journey with dementia. It’s a very expressive way, I think, talking
about the care partnership being like a dance with dementia. This
dance image might help to see what is going on, to us and around us.
On diagnosis, our care network – family members, friends, community
links, professionals and workplace – may react by either denying the
practical realities of the diagnosis or by assuming the role of over-
whelming care-giver – you must do everything because we can’t do
anything.
In the denying reaction, needs are not assessed, and as behaviour

patterns change, the changes, perceived as losses, become the focus of
attention. In the overwhelming care-giver reaction, your emphasis on
loss undermines our self esteem, creates unnecessary stresses across the
care network and contributes to a downward spiral of helplessness
in us.
As our care-partner, do you try to do what you have always done,
or do you learn new steps, sense the movements to trust one another?
The overwhelming care-giver immediately takes over all of our func-
tions, smothering us with love and attention, thereby discounting
remaining capabilities, undermining our self-esteem and placing focus
on the care-giver identity in the relationship.
But like all dance partners, as care-partners in the dance with
dementia, we both have to learn to listen to the music. What is happen-
ing to me, to us? What is the rhythm of our dance with dementia? Is it
fast or slow? Who is in charge?
The care-partner asks: ‘What do you want?’; ‘What can I do to
help?’; importantly, ‘What can you do, or what would you like to be
helped to do?’ The phrase ‘use it or lose it’ is important, and it does not
matter how small the function, it is still important to retain as much as
possible. We dance together, each of us adjusting our steps as we adjust
to each new challenge of dementia.
And we need to watch the musicians – the care network. Profes-
sionals, family, friends provide cues and support for our dance with
dementia. And they should be watching us dance, not playing their
own music! If you are a musician in the care network, then you too
need to watch the dance floor carefully, maybe adjust your rhythm to
ours, maybe play a different tune. You too are part of this dance with
dementia!
But like all dances, there will be times when one partner is in
charge, times when partners are separate, and times when the lead
changes. Questions you might be asking as you, our care-partner,
watch how we are coping with the dance steps of dementia include:
‘Do you want to drive? Do you want to cook? Do you want to do the
washing? Do you want to do the shopping? Can you manage the
shower? What about the telephone? Can you eat OK? What about
your medication? What about daily planning?’
Or are our diminishing energy and resources better spent on being
with our family, writing, talking to others, caring for the garden,
praying, walking, reading, looking after the animals? You know we
can’t do as much, so let’s both adjust the dance so that we do what is
important, meaningful and sustaining to us, and through us to you.
By accepting this journey of change and adaptation, we can dance
with dementia and choose a new life in the slow lane.
Choosing to dance
It has been a long journey now, of knowing I have this death sentence,
this dementia, hanging over me. Time to grieve, time to focus on what
I am losing, but also time to celebrate life each day, smell the flowers,
and focus on what will stay with me forever. God will always be there,
Paul and my girls will always surround me with love, and I will be part
of a beautiful creation, moving along with it, enjoying the moments as
they go by.
Of course we desperately seek and hope for a cure, but in the
meantime, we struggle to remain as well as possible for as long as
possible. We can find out how much music we can still make with what
we have left, as we celebrate this new life in the slow lane. We can find
new ways to enjoy each moment of our day. For me it is the beauty of a
sunset, of seeing my daughters’ joys and triumphs, of stroking cats and
hugging my husband.
As we dance with dementia, to struggle to cope, we can still create
and dazzle, despite our limitations. We can develop new talents, the
pearls hidden within us, by focusing on relationships and on greater
emotional and spiritual connection, rather than on cognition. By
assigning cognition a secondary place, being content with our new
life, we can enhance these other aspects of our personality. We can
rediscover our spirituality, developing a greater awareness of what
gives us meaning in life. My Christian faith certainly flourished, as I
turned to God in anger, fear, confusion, and eventually acceptance.
We cannot change our illness, but we can change our attitude to it.
This is enough to transform our life. All of us can choose our attitude
each day. I choose to be a survivor. In describing life in Auschwitz,
Viktor Frankl said, ‘Any man can, even under such circumstances,
56
decide what shall become of him, mentally and spiritually.’ And for
the person with dementia, our circumstances mean that our
care-partner can play an important role in helping us to make the
choices that free us, that give us inner freedom and allow us to retain
our human dignity.
A Buddhist saying captures the importance of choosing our
attitude: ‘View the world from a different perspective, the world is vast
and wide. Change to a different viewpoint in your relationships and in
dealing with all matters, everything will be light and easy.’
For me, dementia is a gift – precious time to account for life, to
reflect on my eternal spirit and its relationships with the divine, to
reflect before God. Psalm 23 of the Bible reassures me with these
words: ‘Even though I walk through the valley of the shadow of death,
I will fear no evil, for you are with me.’
It is through finding meaning in life, even in dementia, that we can
create a new sense of becoming, and overcome our fear of loss. By
working through our fear, we can begin to feel joy. We are on a path to
healing, through feeling and acknowledging our fear, anxiety, and the
ebbs and flows of confusion.
By casting aside the lie of dementia, that we are losing our
selfhood, we can work towards creating a new future, of being a
survivor. Our passage towards this choice will be a struggle of feeling
to achieve healing. Most importantly, on this journey, we can come to
realise that we are uniquely qualified to reach out to you, our families
and friends walking alongside us on this journey with dementia.
And many of us find self validation in giving of ourselves to others.
I find this expressed in a Buddhist saying: ‘Give without expectation
and give with gratitude, for giving will reap the greatest harvest.’ As a
Christian, I am called to help others, to love others as Jesus loves them,
as if I could see the world from their eyes, and knew all of their pains
and joys. To reach out to others, and to seek inner healing, will take
great determination. Determination is about getting back into the

driving seat of life. We are confronting the fear of a living death,
drawing on our inner resources. We can overcome our feelings of
inertia, of exhaustion, as we face this journey of dementia with
courage.
We need to find the pearl hidden within us. Like the pearl that is
formed through the irritation of a grain of sand within an oyster, our
pearl has formed through the challenge of living with dementia.
Finding this pearl within is the key to creating a new future of life in
the slow lane.
To cope in this confusing reality is a struggle. My keys for coping
are a strong Christian faith, the love of friends and family,
anti-dementia drugs, and a positive attitude. Our faith, or our spiritual-
ity, is crucial. We are losing our cognitive self – even a reliable and
coherent emotional self. What remains is our spirituality. We need you
to help us connect with our faith – to whatever has given us true
meaning in life. The meaning I choose is an attitude, of love for others,
of love for the creator, and of acceptance of a meaning in my disease. It
is not what we want from life but what we give to it! This is our
purpose, and dementia is a journey in which we can explore this
meaning and connect with others.
My Christian faith has helped me to find a meaning even in suffer-
ing. It gives me hope, and helps me to avoid the self-pity that leads to
depression, and gives me a focus on helping others. It is helping me to
accept that I am still really very much me, and that I still have a rela-
tionship with other people, and with God.
I treasure every single moment of life and realise that my time on
this earth is not what’s most important. Although I’ll do what I can
while I’m here, my action is not what is most important to me. It is
rather my eternal life that is important, and that remains in my spirit
through and beyond this journey with dementia. My faith gives me a
different perspective. And with those different glasses on, as it were, it
enables me to cope so much better.
Now, even with dementia, I can live without despair and unhelpful
self-pity, relying on God’s unconditional love. I do not need to do
anything to earn it except to be me, even as I am with dementia. We are

all accepted as wonderful and whole human beings. God values each
one of us, and we need to see ourselves as God sees us – as a very
special person of great value and worth. My situation has not changed,
but I feel so different about it.
The love of family and friends surrounds us and gives security, an
oasis of emotional warmth in an otherwise confusing world. You are
our care-partners on this journey, and we need you to understand us,
and to meet our needs as we become less and less able to deal with this
illness. The care-partner can be the husband or wife, the daughter or
son, the staff at the day care centre, the Alzheimer’s Association, or any
other person in a helping relationship with the person with dementia.
You give us hope and encouragement, and help us to overcome our
deficits in a positive way.
The love of my family and friends – most importantly Paul and my
daughters – helps me through each day, and gives me the security and
hope that I need for the future. I have lots of deficits, but Paul compen-
sates for these, adjusting his every response as my care-partner so that I
can function to the best of my ability. In living this dance with
dementia, my care-partner and I take steps that match each other. His
steps guide me round this dance floor of life.
Drugs or complementary medication are important to clear the
fog. They give me the ability to speak, and to remain aware of and con-
cerned about what is happening around me. Without them, I am apa-
thetic, unable to cope with daily life. I would be no longer able to
speak, think or do much at all. I would still have faith and hope, be sur-
rounded in love, but be unable to communicate clearly, to enjoy living,
to be able to do as much as possible for myself for as long as possible.
My attitude has transformed the pattern of my life, and I choose to
live positively with dementia, drawing on my inner psychic resources
and my spirituality to view each day, each hour, as a gift. We can all
choose how we will react to a new life. So our first step is to find out
what we can celebrate. We can choose to find joy in being sensitive in
our relationships, in being more open to our spirituality, and in finding
positive aspects of living in the slow lane. For me the first steps to cele-
brate were retiring from work and being able to pick up my daughters
after school in the light, rather than race home to see them in the dark
after a long day at work.
I choose a new identity as a survivor. I want to learn to dance with
dementia. I want to live positively each day, in a vital relationship of
trust with my care-partners alongside me. By rejecting the lie of
dementia, and focusing on my spirit rather than my mind, I can be free
of fear of loss of self, and in so doing can also help you to lose your fear
that you are losing me.
I look towards new horizons of hope, as we people with dementia
seek liberation from internalising the oppressor of dementia. To live
with ‘the fear of ceasing to be’ takes enormous courage. The precious
string of pearls, of memories, that is our life, is breaking, the pearls are
being lost. But by finding new pearls, those created in the struggle
with dementia, we can put together a new necklace of life, of hope in
our future.
Each person with dementia is as worthy and precious as a beautiful
newborn baby, a gift for us all to cherish. With our damaged brain, we
have no memory of how you might have hurt us in the past, no worries
about what you might do to us in the future, and no idea what we
might have done to, or neglected to do for you. All we can do is
intensely experience the ‘now’ of each moment with you. Treasure
these moments and you will be able to share true acceptance of self.
We need to express our voices together, from our different perspec-
tives, of this interdependent struggle to live with the unpredictability
and irrationality of dementia. Each person with dementia is a gift, and
has a great deal of wisdom about life. It is those around us who need to
unwrap this beautiful package.
We seek a new paradigm of dementia survival with dignity,
walking with you on that journey from diagnosis to death. This
journey of survival, of uncovering the inner spirit, is a journey of
letting go, and finding inner peace, as expressed in the Buddhist
saying: ‘A wise person is able to let go. To let go is actually to receive
boundless happiness.’ For me, my journey has taken me into an ever
deeper and more trusting relationship with God, knowing he loves me

just as I am, my true inner self. I have been able to ‘Let go and let God’.
As survivors of the journey with dementia, we can share with you
the insider’s knowledge that we have. We are confronting a living
death, and we are trying to find ways to liberate ourselves from this
fear of ceasing to be. We know what it was once like to be normal, like
you. We know both your world and ours. We have stepped into this
new world of dementia. It is as if we are bi-cultural, and have stepped
across the divide between your world and ours.
With your understanding and support, we can help you to help us.
We can make history together. Find a way to listen to our broken
voices, our disjointed thoughts, and our fragmented memories of how
things are and used to be. Let’s work together to share our insights as
equal partners – people with dementia, their families, and those who
support them – on this journey from diagnosis to death.
Afterword
D ear reader, I thank you for letting me share my journey with you.
Much has changed since I stumbled onto the dementia dance
floor. There is medication, there is better understanding, there is better
support. But there is still no cure, and much remains to be done to
break down barriers of stigma and ignorance about this disease.
There were many times when I despaired of ever finishing this
book. It has been a real effort to get my thoughts together. I have given
my best. If you have dementia, I hope that some of what I have written
may help you feel less alone. If you are a care-partner, I hope you might
understand us a little better.
It has been a tremendous struggle to collect together all my
thoughts, talks, speeches, correspondence, notes and so on, for the last
six years. Inspiration, rather than memory, has been the thread that
enabled me to weave these disjointed fragments into this book.
‘The years have gone by yet in many ways yesterday is as
tomorrow, real though distant, old as history yet as new as the next
sunrise. The memory of writing these words eludes me. Their truth
57
however makes all the struggles and heartaches seem as nothing.’
But I am tired and I need to turn my computer off. I am feeling
burnt-out, exhausted, no longer able to make this type of sustained
173
effort any more. It is time to move away from the bright lights to a
corner of the floor where the rhythm is slower and the music quieter,
but still sweet. All I can do now is sit quietly and listen, and hope for a
cure.
Beachmere, July 2004

APPENDIX 1
Do You Believe In Miracles?
It was a cold, windy October evening and Paul got a bit lost as we tried to
find the venue for my talk to a women’s group in Goulburn. I had been
invited by the ecumenical church men’s group to speak at this dinner, which
they had cooked, were serving and organising for their lady folk.
I could barely speak, though, having lost my voice due to a very bad
dose of flu, and felt snuffly and a bit shivery. Hardly after-dinner speaker
material! So I sat with a group of lovely ladies and tried to make conversation
despite the limitations of my voice and the need to frequently blow my nose.
I was an uninspiring sight, I am sure! Soon, all too soon, dessert had been
served and eaten – by our menfolk all dressed in white shirts, black trousers
and bow ties – and I was being introduced. I prayed a silent prayer as I
walked to the microphone – I needed to be able to get through this with my
voice threatening to give up entirely at any minute.
Where had this started? The previous evening, the phone had rung and
my daughter took the call. ‘Mum,’ she said, ‘it’s for you.’ I took the phone
and said ‘Hello’. ‘Hello, this is Ian.’ My mind spun the wheel of fortune,
trying to guess who this was. ‘Yes?’, I said, sort of with a question mark. He
must have guessed I was a complete blank. ‘Ian Lyon.’ Hum. Still no luck
with the wheel. It spun round and got no matches.
Even more alarmingly, with my obvious uncertainty, he then said,
‘You’re our guest speaker for tomorrow night.’ Now alarm bells were being
set off in my head. Vaguely I remembered being asked to do something like
this months ago, but had seen nothing in writing, talked to no one, and had
nothing in my trusty memory bank – the diary.
‘I think you’d better talk to my husband,’ I said, in a complete panic. First
of all, I could hardly speak, having a bad dose of flu. Secondly, I would have
175
to write a talk, and Paul would have to drive me there and back, and still get
up to catch the early flight to Melbourne on Saturday morning.
But you know what it is like with God, those sorts of things don’t really
matter to him. After all, with him, all things are possible.
Paul came gleefully back upstairs, and I said, smiling, ‘I suppose we’re
going to Goulburn tomorrow night!’ So there we were, in Goulburn on a
cold blustery evening! And I started to speak these words.
Well, I want to tell you a bit about healing – it really happens today,
not just 2,000 years ago. And you don’t need bucket-loads of faith,
or be very holy or important, to be healed.
Nor do you have to be brave – you can be very fearful, like I
was, very down at heart, and not believing God could heal me,
when I was diagnosed with Alzheimer’s Disease five years ago. I
was told I would be in a nursing home by the year 2000, and dead a
few years after that from this horrific terminal illness.
Who will I be when I die?, the title of my first book, expresses my
fears about dying with dementia – will I know who I am, who my
family and friends are? Most importantly, will I still know God?
But here I am, still alive and well, living with considerable brain
damage, which if you only looked at my scans would have you
booking me into the nearest nursing home. But when you listen
and talk to me, this is God at work, our miracle worker. Surely the
Holy Spirit is filling those empty spaces in my brain, giving me
much joy and peace, as well as helping me to cope with daily life.
Maybe some of us think that good people never got sick, and
that sickness comes from some sin in your life. The Bible, in the Old
Testament, describes a man called Job, who lost his wealth and his
health. His friends said to him he must have done something very
wrong for this to have happened. His wife suggested he give up on
his God. But Job kept believing in God’s goodness, and that
somehow God knew much more than him about what this was all
about and why he might be suffering. He remained faithful, yet
puzzled by his God. I had quite a few letters when I was first
diagnosed with Alzheimer’s Disease, suggesting that there must be
some sin or lack of forgiveness in my life that needed to be dealt
with, which upset me. I had enough questions of my own to ask
God, without any further uncertainty!
But I do believe that we can be healed, from illnesses of our
spirit, our emotion and our physical body. I do believe that I am
being healed, even though I am not as well as I was. I know that

spiritually and emotionally there has been huge growth in my life!
Sometimes we are not healed in any areas, other times we are. It is
all a mystery, just like life is a mystery, as are illness and death, and
what lies beyond.
In the Bible, in the New Testament, witnesses have written
about Jesus doing acts of healing, and being mobbed by crowds of
people wanting to be healed. They report that Jesus told his 12
disciples to cure every disease and every sickness, and gave the
same command to 70 people he chose to go out amongst the sur-
rounding villages.
Healing was one of the last things he told his friends about
after coming back from the dead, and before finally disappearing
from their sight. He said that people who believed in him would lay
hands on the sick and they will recover. The first followers of Jesus
were evidence of this, and descriptions of their actions talk about
crowds gathering to see many who were paralysed or lame being
cured.
So if I think we can heal, how do I think we go about it? And
does healing still happen today, or did it stop about 2,000 years
ago? Is there some special way to pray? Do we have to lay hands on
someone? Do we have to be very holy or righteous to pray for
healing?
I am no theologian and can only talk to you about my own
personal journey with healing over the last five years. But I still
have some tough questions about healing, to ask God one day:
Why are some healed and others not? Why do we all die eventually
of something or other? And what if a blind person came up to you
right now and asked you to pray for her healing? You might put
your hands on her head, even over her eyes, and maybe pray for
healing. But would you really expect it to happen, for her to
suddenly be able to see and to race outside to tell her friends and
family that God has restored her sight?
When I was told I had Alzheimer’s Disease and would decline
rapidly into advanced dementia within about five years, I was
scared! I realised that the disease eats away at the brain, so that
slowly it disappears and you lose all sorts of abilities, like talking,
writing, walking, till in the end you slip into a coma and die. There
is no cure and there are no stories of remission, unlike cancer.
To believe I could defy dementia was a test of my faith – as well
as for everyone in my church who was praying for me. I had
struggled with my faith in healing, feeling somehow a bit of a fraud

in praying for it, as I really didn’t expect it to happen. So I did not
pray for my own healing, and just let others do that for me.
But God has done and is still doing amazing things in my life,
and has given me much joy and showered me with blessings
through all of this. I don’t deny I have dementia, and that I am
getting sicker each month, each year, but certainly the decline is far
slower than expected. I am not sure what each of us thinks is meant
by the word ‘healing’. I have learned a lot about healing in my
journey with dementia. I have come to realise that healing can and
does happen, and that it is far more than just the physical cure that
we in our simple worldly perspective hope for, but struggle to
believe in.
Already the damage to my brain clearly visible in scans is such
that I should be much more disabled by now. But my brain is still
functioning quite well despite all the missing bits. Is this healing? I
believe it is only part of the story – and not the most important
part.
Healing is more than just physical healing, we can be healed in
two other areas – spiritual and emotional. These are even more
important, surely, for our spiritual healing is an eternal solution,
not one only for this world. And our emotional healing has so
much bearing on all our relationships in this world with God, our
family and our friends.
The other problem we seem to have with healing is that we
expect it to be instant. But so often we get sick bit by bit, so why not
get better physically, emotionally, spiritually – by tiny steps?
For me, healing is wholeness of the body, mind and spirit,
where wholeness of the body is the physical healing we all focus on
so much, wholeness of the mind is the emotional healing needed to
restore us in our relationships, and wholeness of the spirit is the
eternal spiritual healing that surpasses all other forms of healing.
I know that I have been healed spiritually and emotionally of
the doubt of where God might be in all of this, and of the fear of
the disease itself, of the way it takes away the mind bit by bit. But
this spiritual and emotional healing happened in stages for me, and
I describe some of this in my first book.
All along, too, in my heart I did not believe in my own physical
healing, a cure. But I was really challenged to ask for prayer when
late in 1996 I started experiencing hallucinations. By 1997 they
really scared me and I speak in my first book of how I spent a
terrible night, dragging myself to church the next day, weary and
burdened with fear, and sought prayer after the service. I had never
prayed for my own healing, although lots of other people were
praying for me. I thought Alzheimer’s was too hard and I couldn’t
see why God would bother with me – I was no Mother Teresa with
a great mission.
I only asked three people to pray, and just for the hallucinations
to stop. I set these limits on God, as I doubted in ‘real’ healing.
Closing my eyes, I did not realise a ‘prayer scrum’ of almost the
whole congregation had formed around me. Of course, they did
not know about these limits so they all asked for me to get better.
Only later, much later, was I told what had happened. All I
knew was that the hallucinations stopped that night, but then also I
began to get a bit better and did not understand why. I did not
know anyone had asked for more than I had expected.
Over the following weeks my brain was much less foggy. I was
able to speak a little better, and not get too many words mixed up or
confused. I began to do much more than before, even being able to
visit shopping centres and other busy places without getting too
exhausted. I started driving my car again.
A month or so before the prayer scrum at church, I had sent the
draft manuscript for my book off to some publishers. It was not
until I had begun to get better that HarperCollins got back to me
saying they wanted to publish it. I said I would have to add a
chapter or so on healing, and over the next month or so finished
the book. It was almost as if God had waited to heal me, until he
was sure I would write about it!
I must admit, though it is hard to get used to the idea that
maybe, just maybe, I might be defying this dementia. We had
planned on my steady decline, as medically expected. And here
God has put a spanner in the works. So we take each day as it
comes.
We need to try and believe in my healing – really believe – and
to realise that prayers have been zapped up to God from around the
world for my healing. Didn’t we really expect him to do something
as a result? We may well have been faithful in prayer, but have we
been faithful in our belief that he will answer us?
I have been and am being healed emotionally and spiritually. I
can also say that I am not declining with dementia as fast as
expected. But I still struggle with the doubt of a complete cure,
even though I am living the experience of a more holistic healing

moment by moment.
Unlike cancer, I have never heard of remissions or healing from
Alzheimer’s disease, so it really will be able to be seen as a miracle, a
witness to God’s power! But which is greater, a physical cure or my
spiritual healing? Is it best to say, ‘I am physically healed, praise
God’, or to say, ‘I know all my sins are forgiven, and I go happily
and at peace to meet the Lord of my life.’
For me the last statement is greater, because it is an eternal
solution, not one that only applies to this short earthly life. I prefer
an eternity of forgiveness and being with Jesus, to a transient cure
here on earth.
Of course I’d like complete physical healing. But if salvation
isn’t part of the package, then I’m not interested. I’ll put my trust in
God, for he has my eternal interest at heart. If he doesn’t heal me
physically, then he’ll tell me one day why not.
But I believe miracles do happen, and I’d like to encourage you
all never to underestimate what God can do. Healing does happen
today, and we can all pray for healing. It is God who does the work,
not us, so we have no need to be super-righteous or holy, or even to
have great faith. We can lay hands on someone if we feel this is the
right thing to do. But there is no formula for our words or action.
All we need to do is simply to ask God to heal.
You don’t need lots of faith to pray for or receive healing. Don’t
give up if nothing seems to be happening to the people you are
praying for. Maybe if you see them again, have enough confidence
to ask how they are going. You might not see the results straight-
away or ever, but neither do doctors and we still believe doctors can
fix us. Doctors can’t cure everything, but we don’t give up on them.
Don’t give up on God.
If you don’t see healing, don’t blame anyone. You didn’t have
too little faith, the person you were praying for didn’t have too
little faith either. It just didn’t happen maybe the way you expected
it. Spiritual and emotional healing might be going on deep down
where you can’t see it.
For me, I am declining daily, but much slower than expected.
All of this is God’s work, and my neurologist in Sydney never
ceases to be amazed at my level of functioning despite steady brain
deterioration. So I do believe miracles happen, and I’d like to
encourage you to try not to underestimate God. I am always
surprised by how he works in my life, even in the midst of my daily

struggles with this disease.
God has given me enough time to help change views about
people living with dementia, that they are people worthy of value
and dignity. Like Jesus, we need to love them as they are, to see
them as real human beings, and to connect with them at the deep
level of spirit to spirit.
APPENDIX 2
Frequently Asked Questions
When I give talks, people always ask lots of questions about dementia. Like
them, I did not know anything about Alzheimer’s or other dementias before
the fateful day when the doctor told me I had Alzheimer’s Disease and later
that I had fronto-temporal dementia.
I have found the national website of Alzheimer’s Australia
(www.alzheimers.org.au) to be a very helpful source of information. It has
drawn from other sources in the UK, Scotland and the USA to compile a very
comprehensive amount of information. People with dementia were involved
in developing the site, so I find it easy to use, without pictures or moving
objects that can distract me. I have used this website, together with my own
‘insider’s perspective’, as a major source to put together the following
material to help answer a few of the most frequently asked questions. There
are many other sites on the world wide web about dementia.
There is also a very special web site to me, www.dasninternational.org,
which was developed by people with dementia, for people with dementia.
We are linked together as an email community and chat room throughout
the world as part of the Dementia Advocacy and Support Network Interna-
tional. Some of my talks are on this website.
Who gets dementia?

Most people with dementia are older, but it is important to remember that
most older people do not get dementia. It is not a normal part of aging.
Dementia can happen to anybody, but it is more common after the age of
65 years. One in four people over the age of 85 have the condition. People in
their 30s, 40s and 50s can also have dementia. I was only 46 when I was
diagnosed with dementia, and in DASNI I knew a young woman in her early
20s who had dementia.
182
What is dementia?
Dementia is the ‘umbrella’ term used for a large group of illnesses, including
Alzheimer’s Disease, which cause a progressive decline in a person’s mental
functioning, such as a loss of memory, intellect, rationality, social skills and
normal emotional reactions.
There are various types of dementia, but Alzheimer’s Disease is the most
common type. The effects of the different types of dementia are similar, but
not identical, as each one tends to affect different parts of the brain.
What is younger or early-onset dementia?

The term younger or early-onset dementia describes any form of dementia
occurring in people under the age of 65.
What is senile dementia?

In the past, senile dementia was regarded as being associated with old age,
and pre-senile dementia was a disease with similar symptoms in a younger
person.
It is now realised that dementia can occur at any age, and is the result of a
number of types of illnesses, such as Alzheimer’s Disease, none of which is a
normal part of aging. So it is vital to have an accurate diagnosis for any
symptoms of dementia, even in elderly people, as treatment is available both
to alleviate symptoms and, in some cases, to prevent further damage. For
example, if the dementia is the result of poor nutrition in an elderly person,
this can be readily addressed.
What is early-stage dementia?

The term early-stage dementia describes any form of dementia in its earlier
stages, when the person can still do most things for themselves.
Is dementia the same as Alzheimer’s Disease?

Dementia is the word used to describe the types of illnesses that cause brain
damage leading to symptoms of memory loss, confusion, language problems
and behavioural change. There are about 70 different causes or types of
dementia. Alzheimer’s Disease is the most common form of dementia, and
one specific type of dementia.
Can dementia be inherited?

It depends on the type of dementia.
For example, although about a third of people with Alzheimer’s Disease
have a close relative with dementia, the inherited type of Alzheimer’s
Disease is very rare. Alzheimer’s Disease occurs relatively frequently in
elderly people, regardless of family history.
About 20–50 per cent of people with fronto-temporal dementia have a
family history of the disease.
In some rare cases of younger onset Alzheimer’s Disease there is a clear
pattern of each child having a 50 per cent chance of inheriting the disorder.
For those at risk, genetic testing and counselling is available.
What is Alzheimer’s Disease?

Alzheimer’s Disease is the most common type of dementia, accounting for
50–70 per cent of all cases. It is a physical, progressive, degenerative disease,
which affects the brain, resulting in impaired memory, thinking and behav-
iour. Alois Alzheimer first described it in 1907, in a 56-year-old woman.
As brain cells die, the substance of the brain shrinks. Abnormal material
builds up as tangles form in the centre of the brain cells and plaques accumu-
late outside the brain cells, disrupting messages within the brain and
damaging connections between brain cells. Chemical changes also occur in
the brain. This leads to the eventual death of the brain cells.
Memory of recent events is the first to be affected, but as the disease pro-
gresses, long-term memory is also lost. The disease also affects many of the
brain’s other functions and consequently many other aspects of the person’s
functioning are disturbed.
Alzheimer’s Disease usually occurs after age 65, and affects people who
may or may not have a family history of the disease. A very rare form of Alz-
heimer’s Disease is genetic, and if a parent has a mutated gene, each child has
a 50 per cent chance of eventually developing the disease, usually in their
40s or 50s.
In the early stages the symptoms of Alzheimer’s Disease can be very
subtle, and similar to other types of dementia. However, it often begins with
persistent and frequent memory difficulties, especially of recent events, and
difficulty in finding the right words for everyday objects.
Symptoms that can also be found in other types of dementia may include
vagueness and losing the point of everyday conversation (my speed of pro-
cessing what you say is slower); apparent loss of enthusiasm for previously
enjoyed activities (often called apathy – everyday life takes so much of my
energy); taking longer to do routine tasks (nothing is automatic anymore, so
everything takes more effort and thought); forgetting well-known people or
places (I have lost the ‘label’, but still know someone or some place is impor-
tant to me); inability to process questions and instructions (there is not
enough space in my brain to hold onto all this information); deterioration of
social skills (there is not enough thinking space to remember what to do and
say) and emotional unpredictability (I have less control and am more imme-
diate in my reactions).
The disease progresses at a different pace according to the individual
and the areas of the brain affected, and abilities may fluctuate from day to
day, or even within the one day, becoming worse in times of stress, fatigue or
ill-health. I certainly have my good and bad days. However, the disease does
lead eventually to complete dependence and finally death, usually from
another illness such as pneumonia. A person may live from 3 to 20 years with
Alzheimer’s Disease, with the average being 7 to 10 years. However, such
estimates depend on exactly when during the course of the disease the
person was diagnosed.
Scientists are rapidly learning more about the chemical changes which
damage brain cells in Alzheimer’s Disease but apart from the few individuals
with genetic Alzheimer’s Disease, it is not known why one individual gets
Alzheimer’s Disease late in life and another does not. A variety of suspected
causes are being investigated including factors in the environment, biochem-
ical disturbances and immune processes. The cause may vary from person to
person and may be due to one factor or a number of factors.
What is vascular dementia?

Vascular dementia is the second most common form of dementia. It is due to
problems in the circulation of blood to the brain causing a deterioration of
mental abilities as a result of multiple strokes, or infarcts, in the brain. A
stroke refers to the death of a piece of brain tissue supplied by a blood vessel
or blood vessels where the blood supply is blocked or interrupted. These
strokes may cause damage to specific areas of the brain responsible for
speech or language as well as producing generalised symptoms of dementia.
Vascular dementia may appear similar to Alzheimer’s Disease. A mixture
of Alzheimer’s Disease and vascular dementia is a common cause of
dementia, and it can sometimes be difficult to separate the two. ‘Internet’

friends of mine have this diagnosis, and have very similar problems to those
of us with other types of dementia.
Probably the most common form of vascular dementia is multi-infarct
dementia caused by a number of small strokes, called mini-strokes or tran-
sient ischaemic attacks, which cause damage to the cortex of the brain – the
area associated with learning, memory and language. Symptoms may
include severe depression, mood swings and epilepsy.
Another type is Binswanger’s disease (or sub cortical vascular dementia),
which may be relatively common. It is associated with stroke-related
changes, affecting the ‘white matter’ deep within the brain, and is caused by
high blood pressure, thickening of the arteries and inadequate blood flow.
Symptoms often include: slowness and lethargy; difficulty walking; emo-
tional ups and downs; lack of bladder control early in the course of the
disease; gradually progressive dementia developing later.
Several factors increase the risk for vascular dementia, including: high
blood pressure, smoking, diabetes mellitus, high cholesterol, history of mild
warning strokes, evidence of disease in arteries elsewhere, and heart rhythm
abnormalities.
Vascular dementia usually progresses gradually in a step-wise fashion in
which a person’s abilities deteriorate after a stroke and then stabilise until the
next stroke. Sometimes the steps are so small that the decline appears
gradual. On average though, people with vascular dementia decline more
rapidly than people with Alzheimer’s Disease, often dying from a heart
attack or major stroke.
What is dementia with Lewy bodies?

A significant number of people diagnosed with dementia are found to have
tiny spherical structures called Lewy bodies in the nerve cells of their brains.
It is thought these may contribute to the death of brain cells. They are named
after the doctor who first wrote about them. It is sometimes referred to as
diffuse Lewy body disease.
Dementia with Lewy bodies sometimes co-occurs with Alzheimer’s
Disease and vascular dementia. The symptoms of dementia with Lewy
bodies include: fluctuations in the condition; difficulties with concentration
and attention; extreme confusion; difficulties judging distances, often result-
ing in falls; visual hallucinations; delusions; depression, and tremors and
stiffness similar to that seen in Parkinson’s Disease.
Dementia with Lewy bodies is often mild at the outset and can be
extremely variable from day to day. Friends of mine with this type of
dementia have been diagnosed on the basis of symptoms such as hallucina-
tions, delusions and tremors occurring relatively early on in the disease. The
disease is progressive, eventually leading to complete dependence. Death is
usually as a result of another illness such as pneumonia or an infection. The
average lifespan after the onset of symptoms is about seven years. At present
there is no known cause of dementia with Lewy bodies and no risk factors
have been identified.
What is fronto-temporal dementia?

Fronto-temporal dementia is due to a progressive degeneration of the
temporal and frontal lobes of the brain. Damage to the temporal lobe affects
language and emotion, and damage to the frontal lobe leads to alterations in
behaviour and loss of judgement. It usually begins between 40 and 65 years
of age. I was 46 when diagnosed (initially it was thought to be Alzheimer’s
Disease).
An early symptom is behavioural change, including impulsivity, hyper-
activity and being obsessive. I am no longer a ‘can do’ person, and also find it
very hard to restrain my impulses, in terms of, say, picking wool off a
stranger’s coat, stepping in people’s way or speaking loudly. I am at times
manic, focused, agitated and active, and have this obsession about going to
collect our mail.
Language problems often occur early in the disease. Instead of being
able to find the right word to describe an object, I often have to describe it
instead. I once rated very highly in terms of verbal fluency, but now have
great difficulty – the picture for something is in my head, but the word for it
has gone. Mutism usually develops, and I am dreading this, as I think I will
be very frustrated at not being able to communicate my feelings. However,
apparently the person at this stage may still be able to retain some under-
standing of what is spoken to them.
There is increasing impairment in ‘executive functions’, such as
distractibility (I am easily distracted by what is going on around me); inflexi-
bility (often I cannot cope with alternative views to my own); or difficulty
adapting to changing circumstances (I need my routines). Planning and
problem solving ability decreases (I cannot work, and rely on my husband
for cooking, driving, washing, and other such complex activities).
Fronto-temporal dementia includes frontal lobe dementia, Pick’s

Disease, cortico-basal degeneration, progressive aphasia, and semantic
dementia. It may also be associated with motor neurone disease or
amyotrophic lateral sclerosis (Lou Gehrig’s Disease).
The course of these dementias is an inevitable progressive deterioration.
From the onset of the disease, life expectancy can be 2 to 15 years, with an
average of 6 to 12 years. Death usually comes from another illness such as an
infection.
It is caused by abnormalities in the tau protein.
What is alcohol-related dementia?

Alcohol-related dementia is related to the excessive drinking of alcohol, par-
ticularly if associated with a diet deficient in thiamine (Vitamin B1). It is cur-
rently unclear as to whether alcohol has a direct toxic effect on the brain cells
or whether the damage is due to lack of thiamine, vitamin B1. The symptoms
can vary from person to person but generally will include: impaired ability to
learn new things; personality changes; problems with memory; difficulty
with tasks which require planning, organising, judgement and social skills;
problems with balance, and decreased initiative and spontaneity.
Males who drink more than six standard alcoholic drinks a day, and
women who drink more than four alcoholic drinks a day seem to be at
increased risk. If drinking stops, there may be some improvement. Taking
thiamine appears to help prevent and improve the condition.
What is AIDS-related dementia?

When someone has acquired immune deficiency syndrome (AIDS) they may
develop a complication to the disease which is known as AIDS-related
dementia. Symptoms include: difficulty concentrating and remembering;
slowed thinking and task completion; difficulty keeping track of daily activ-
ities; irritability; difficulty with balance; poor coordination and a change in
handwriting, and depression.
Down’s Syndrome-related Alzheimer’s Disease?

Studies show that by the age of 40, most people with Down’s Syndrome
have the changes in the brain associated with Alzheimer’s Disease. They
have an extra copy of chromosome 21, so make much more amyloid precur-
sor protein, and this seems to result in an excess of abnormal amyloid break-
down product, which appears to cause earlier appearance of the brain
changes typical of Alzheimer’s Disease. However, a significant number of
people with Down’s Syndrome are older than 40 and show no signs of
having Alzheimer’s Disease. It is not currently understood why changes to
the brain that are typical of Alzheimer’s Disease do not necessarily produce
the disease in people with Down’s Syndrome.
What are the early signs of dementia?

The early signs of dementia are subtle, vary a great deal and may not be
immediately obvious. They include problems with memory, confusion, per-
sonality change, apathy and withdrawal, and loss of ability to do everyday
tasks. Sometimes people fail to recognise that these symptoms indicate that
something is wrong, and mistakenly assume that these are a normal part of
the aging process. Families often say the person has ‘changed’ and ‘is differ-
ent’, but cannot point to anything major, just an accumulation of small
changes.
• One of the main symptoms of dementia is memory loss. We all
forget things from time to time, but the loss of memory with
dementia is persistent and progressive, not just occasional. It’s
normal to occasionally forget appointments or a friend’s phone
number and remember them later, but a person with dementia
may forget things more often and not remember them at all.
There is simply a blank, a ‘black hole’ where events, places and
names used to be.
• People can get distracted from time to time and they may forget
to serve part of a meal. A person with dementia may have trouble
with all steps involved in preparing a meal. I need to be very
focused to do such a complex task and any distraction means it is
forgotten.
• It’s normal to forget the day of the week – for a moment. But a
person with dementia may have difficulty finding their way to a
familiar place, or feel confused about where they are. I never can
work out what day or time it is, and can feel very confused if left
alone even in a familiar place.
• Everyone has trouble finding the right word sometimes, but a
person with dementia may forget simple words or substitute
inappropriate words, making sentences difficult to understand.

Mine are scrambled grammatically and with the totally wrong
words.
• Balancing a cheque-book can be difficult for anyone, but a
person with dementia may have trouble knowing what the
numbers mean and what needs to be done with them. I try very
hard, but sometimes numbers are just sounds or squiggles, and I
cannot calculate any more.
• Dementia affects a person’s memory and concentration and this in
turn affects their judgement. Many activities, such as driving,
require good judgement and when this ability is affected, the
person will be a risk, not only to themselves, but to others on the
road. I find driving to be a very complex skill that requires
concentration and an ability to react quickly, which I can no
longer do.
• Anyone can temporarily misplace a wallet or keys. A person with
dementia may put things in inappropriate places. I put something
down, when distracted by another task, then forget where I put
it, and it turns up in the most peculiar place!
• Everyone becomes sad or moody from time to time. Someone
with dementia can exhibit rapid mood swings for no apparent
reason. They can become confused, suspicious or withdrawn. My
emotions just seem very scrambled and mixed up.
• People’s personalities can change a little with age, but with
dementia a person may become suspicious or fearful, apathetic
and uncommunicative, or dis-inhibited, over-familiar and more
outgoing. I have changed a great deal, from being very much in
control and task-oriented, to a person who is dependent and
more led by impulse and emotion.
• It’s normal to tire of some activities, but dementia may cause a
person to lose interest in previously enjoyed activities. Everything
takes so much effort, that even daily life is a chore.
How is dementia diagnosed?

Many treatable conditions have symptoms similar to dementia, so it is
important to consult a doctor to obtain a diagnosis at an early stage. There is
currently no single test to identify Alzheimer’s Disease or any other
dementia. The diagnosis is made only after careful clinical consultation and
an assessment which might include the following:
• A detailed medical history, provided if possible by the person
with the symptoms and a close relative or friend. This helps to
establish whether there is a slow or sudden onset of symptoms
and their progression. I went with my daughter, who was able to
verify my increasing difficulties.
• A thorough physical and neurological examination, including
tests of the senses and movements to rule out other causes of
dementia and to identify medical illnesses which may worsen the
confusion associated with dementia. I have had regular testing
each year.
• Laboratory tests including a variety of blood and urine tests
called a ‘dementia screen’ to test for a variety of possible illnesses
which could be responsible for the symptoms. I had a range of
such tests, including for AIDS.
• Neuropsychological testing to identify retained abilities and
specific problem areas such as comprehension, insight and
judgement. These psychometric tests were critical in finding out
which areas of my brain were most affected.
• Other specialised tests such as a chest x-ray, ECG, or CT scan.
These have shown progressive damage over the years. This is not
always the case. Sometimes there are symptoms but little damage
to the brain.
• A mental status test to check the range of intellectual functions
affected by the dementia such as memory, the ability to read,
write and calculate. This simple test was not very helpful in
diagnosing me, because of my previous ability. The psychometric
tests were of more value.
• Psychiatric assessment to identify treatable disorders which can
mimic dementia, such as depression, and also to manage
psychiatric symptoms such as anxiety or delusions, which may
occur alongside a dementing illness. It is really important to rule
out depression which can cause ‘pseudo-dementia’.
A definite diagnosis of the actual type of dementia can only be made by
examining the brain, after death. However, the type and course of the
symptoms may assist in determining the probable diagnosis. The above
assessments will help to eliminate other conditions with similar symptoms

such as nutritional deficiencies or depression.
After eliminating other causes, a clinical diagnosis of Alzheimer’s
Disease can be made with about 80–90 per cent accuracy. Sometimes
vascular dementia is difficult to distinguish from Alzheimer’s Disease, and it
is quite possible for a person to have both vascular dementia and Alzheimer’s
Disease. Lewy Body dementia is also very similar to Alzheimer’s Disease and
it has sometimes been difficult in the past to distinguish the two.
Fronto-temporal dementia again can be hard to differentiate and I was ini-
tially diagnosed with Alzheimer’s Disease, then fronto-temporal dementia,
but the latter usually begins at an earlier age and is primarily a disease of
behaviour and language dysfunction, rather than memory. For other
dementias, certain laboratory tests, including an examination of
cerebrospinal fluid, may be useful, such as in identifying AIDS-related
dementia.
How can I get the person to see the doctor?

Some people may be resistant to the idea of visiting a doctor. In some cases,
people do not realise, or else deny, there is anything wrong with them. This
can be due to the brain changes of dementia that interfere with the ability to
recognise or appreciate one’s memory problems. Others, with retained
insight, may be afraid of having their fears confirmed.
One of the most effective ways to overcome this problem is to find a
physical reason for a visit to the doctor, such as a general health check, or a
review of long-term medication. Another way is to suggest that it is time for
you both to have a physical check up. A calm, caring attitude at this time can
help overcome very real worries and fears. You may need to talk to the doctor
about your concerns before this check-up, so that the doctor can be
prepared, and able to gently explore the key issues.
Should I tell the person with dementia about the diagnosis?

There are some good reasons to tell the person with dementia about the
diagnosis. Many people are already aware that something is wrong. The
diagnosis of dementia can come as a relief as they now know what is causing
the problem. Access to information, support and new treatments are helped
when the person knows about their condition.
Early intervention can enhance quality of life, and knowing about the
condition can allow for planning for the future, and for an honest and open
discussion of the experience of dementia between family and friends.
As a person with dementia, I think it is patronising not to tell us, and that
it is a matter of human rights to allow us to know what is wrong with us in
time to make choices about treatment and management of our condition. But
I know some carers don’t agree, because they feel that it might cause us extra
distress and unnecessary trauma, when we are already struggling, knowing
something is not right ‘in our head’. The important issue is to do what you
think the person with dementia would want you to do, think about their
character before they became sick, and whether they would want to know,
and whether diagnosis, treatment and support, knowing they are not alone,
would help them.
Is there a cure or treatment for dementia?

At present there is no cure for most forms of dementia, but there is treatment.
With vascular dementia, treatment to prevent additional strokes is very
important. Medicines to control high blood pressure, high cholesterol, heart
disease and diabetes can be prescribed. A healthy diet, exercise and avoid-
ance of smoking and excessive alcohol also lessen the risk of further strokes.
Sometimes aspirin or other drugs are prescribed to prevent clots from
forming in the small blood vessels.
The cholinergic drugs, or acetyl cholinesterase inhibitors, have a modest
but definite effect on the core symptoms of mild to moderate dementia, for
many people I know. Currently available cholinesterase inhibitors are:
donepezil (Aricept, which I take each day), rivastigmine (Exelon), and
galantamine (Reminyl). The chemical acetyl choline is a neurotransmitter
which is important in transmitting messages between some brain cells, par-
ticularly in the areas of the brain vital to memory function and acquiring
new information. Autopsy studies have shown that this chemical is deficient
in the brains of people with Alzheimer’s Disease. The cholinesterase inhibi-
tors prevent its breakdown, and so increase the depleted supplies. These
drugs have side effects, including nausea and diarrhoea affecting around 10
per cent of people. I carry loperamide hydrochloride (Imodium) with me
everywhere for this reason – others might like to talk to their doctor about
this too.
Ebixa (memantine) is another class of drug, which according to the Alz-

heimer’s Australia web site may slow down the progression of symptoms in
the middle and later stages of Alzheimer’s Disease, and may also help in the
mild stages. I find it helps me, although I have fronto-temporal dementia, so
perhaps it is also helpful for other dementias as well. Check with your spe-
cialist. It works differently from acetyl cholinesterase inhibitors, and taking
them both (which I do) may be more effective than an acetyl cholinesterase
inhibitor alone. Memantine targets glutamate, which is a neurotransmitter
that is present in excessive levels in Alzheimer’s Disease. This excess gluta-
mate sticks to the nerve cell neuro-receptors, allowing calcium to move into
the brain cells and cause damage. Memantine sticks to the same neuro-recep-
tors, blocking the glutamate and preventing such damage.
The areas in which people may find improvement are in functioning in
daily activities (I am able to shower myself now), and an overall change in
function (my mind is clearer). A small number of people have experienced
side effects, which are usually mild to moderate. These side effects can
include hallucinations, confusion, dizziness, headache and tiredness.
There is a lot of research underway investigating what may assist in pre-
venting the onset of Alzheimer’s Disease or vascular dementia, or, after diag-
nosis, may assist in delaying further progression. Because new studies are
being published all the time, it is best to use websites to check on the latest
information available. Topics to look out for include: Vitamin E, folic acid
and Vitamin B12 and gingko biloba. In any event, because of side effects and
drug interactions, people are strongly advised to consult their doctor if con-
sidering using any other drug/products.
What treatment helps with the other symptoms of dementia?

Dementia often causes a number of behavioural and psychological
symptoms, including depression, anxiety, sleeplessness, hallucinations, agi-
tation and aggressive behaviour. Often these symptoms will not require
medication and may respond to reassurance, a change in the environment or
removal of some distressing stimulus such as pain.
Symptoms of depression are extremely common in dementia. Depres-
sion can be effectively treated with anti-depressants, but care must be taken
to ensure that this is done with a minimum of side effects. I take
moclobemide (Aurorix) as a mood stabiliser.
Anxiety states, accompanied by panic attacks and unreasonable fearful-

ness can be very distressing and may be helped by a group of drugs known as
benzodiazepines. I find that oxazepam (Alepam) helpful in settling me down
when I get anxious and stressed by the early evening.
Persistent waking at night and night-time wandering can cause a lot of
difficulties. Increased stimulation during the day can help, as people may
become dependent on medication and withdrawal may be followed by
rebound sleeplessness and anxiety. I rely on temazepam (Temaze) now to
switch off my brain at night.
Major tranquillisers, also known as neuroleptics or anti-psychotics, are
used to control agitation, aggression, delusions and hallucinations.
Commonly used drugs are thioridazine (Melleril) and haliperidol
(Serenace). These drugs tend to cause symptoms similar to Parkinson’s
Disease such as stiffness, shuffling gait and shakiness in higher doses and
older people are very prone to these side effects. Newer tranquillisers such as
olanzapine (Zyprexa) and risperidone (Risperdal) have fewer side effects and
probably work just as well for the relief of symptoms. It is vital that families
and doctors work together when considering medications and side effects
and other risks are fully discussed.
Should the person with dementia continue to drive?

A diagnosis of dementia does not necessarily mean a person must stop
driving immediately. It is important to remember that any decision that
results in a person’s loss of licence should be made solely for the driver’s
safety and the safety of others. Driving can be a very difficult practical and
emotional issue for people diagnosed with dementia and their families.
Dementia affects driving ability in a number of ways:
• finding the way, even in familiar areas
• remembering which way to turn, and distinguishing left and
right
• responding to the unfamiliar
• judging distance from other cars and objects
• judging speed of other cars, and driving slowly
• reaction time, and making slower decisions at traffic lights,
intersections or changing lanes
• hand-eye coordination, using the accelerator and brake

• reading maps, and interpreting road signs.
Some people will recognise their declining abilities, others may not. Some
people decide to voluntarily relinquish their licence, and recognise benefits
in having less stress, and enjoying the scenery along the way. I have stopped
driving, except in emergencies. Others may be very reluctant to give up this
aspect of their independence. Legal implications need to be checked with
local authorities and/or the local Alzheimer’s association.
Can a person with dementia plan ahead?

With an early diagnosis, the person with dementia should be able to partici-
pate in the planning and make sure that their wishes are carried out. This can
make it easier for families and carers to manage the affairs of the person with
dementia later on. Wherever possible, seek advice very early on, while the
person with dementia can still participate in the discussion and is legally
competent to sign any documents.
Dementia affects people differently. One person may begin to lose the
ability to handle money matters or make competent business decisions at an
early stage, another may keep these skills much longer. However, sooner or
later, the abilities of the person with dementia will decline and they may be
unable to make their own decisions about their financial, legal and medical
matters.
It is useful to set up a legal arrangement such as an enduring power of
attorney. One of the benefits of the enduring power of attorney is that it
allows the person with dementia to choose, ahead of time, someone to act on
their behalf when they are no longer able to do so themselves. I set one up for
my eldest daughter in the first year after diagnosis, and then set up another
one when I married Paul. There are different documents to cover legal,
financial and medical issues.
APPENDIX 3
Where To Go For Help
For more information on any issues relating to dementia I encourage you to

make contact with your national Alzheimer’s Association. Their address may
be in your telephone directory, or you can pick up an internet link through
Alzheimer’s Disease International at www.alz.co.uk.
197
Endnotes
1 C. Boden, 1998, Who will I be when I die?, HarperCollins, East Melbourne, Victoria.
2 L. Jackson, March 2001, private email correspondence.
3 Y. Kawamura, October 2003, private email correspondence.
4 R. Reagan, 1994, Letter from President Ronald Reagan to the American people,
reproduced in Alzheimer’s Disease, The brain killer, in C.J. Vas, S. Rajkumar, P.
Tanyakitpisal and V. Chandra, (eds) World Health Organization, SEA/Ment/116,
2001.
5 C. Boden, 1998, op. cit., p.100.
6 C. Boden, 1998, op. cit., p.117.
7 C. Boden, 1998, op. cit., p.34.
8 S. Hughes, 1998, Every day with Jesus, May/June, Crusade for World Revival (CWR),
Surrey.
9 C. Boden, 1998, op. cit., p.10.
10 Alzheimer’s Australia, 2001, ‘Consumer focus report,’ www.alzheimers.org.au.
11 C. Mulliken, January 2001, private email correspondence.
12 M.L. King, 1994, Letter from the Birmingham Jail, San Francisco, HarperSanFrancisco.
13 M. Friedell and C. Bryden, 2001, Talk to Australian National Conference, April
2001, www.dasninternational.org.
14 T. Bowden, 2001, Australian Broadcasting Corporation (ABC) 7.30 Report, ‘Positive
attitude to living with dementia,’ 11 June, www.abc.net.au/7.30/S311227.htm.
15 DASNI, 23 June 2001, Proposal to ADI, private correspondence.
16 P. Hardt, July 2001, private email correspondence.
17 In S. Ratcliffe (ed.), 2000, The Oxford dictionary of thematic quotations, Oxford Univer-
sity Press, Oxford, p.86.
18 In S. Stewart, 2003, Words to the wise, A collection of African proverbs, Spearhead,
Claremont, p.72.
19 B. McNaughton, November 2001, private email correspondence.
20 W. Fleming and V. Schofield, October 2001, private email correspondence.
21 V. Schofield, March 2003, private email correspondence.
22 V. Schofield, June 2004, private email correspondence.
23 N. Mandela, 1994, State of the Nation Address, Cape Town, 24 May,
www.anc.org.za.
198
ENDNOTES 199
24 L. Smith, January 2001, private email correspondence in response to request from C.

Jonas-Simpson, Early onset Alzheimer’s Disease,
http://www.swchsc.on.ca/research/eoad.html.
25 M. Lockhart, August 2000, private email correspondence.
26 D. Bagnall, 2004, The Bulletin, 22 June, ACP Publishing, Sydney.
27 L. Jackson, August 2000, private email correspondence.
28 John, August 2000, private email correspondence.
29 J. Phillips, August 2000, private email correspondence.
30 M. Friedell, August 2000, private email correspondence.
31 C. Bryden, August 2000, private email correspondence.
32 In S. Stewart, 2003, op. cit., p.46.
33 S. Sabat, 2003, ‘Some potential benefits of creating research partnerships with
people with Alzheimer’s Disease,’ Research Policy and Planning 21, 2, pp.5–12.
34 C. Bryden, 2002, ‘A person-centred approach to counselling, psychotherapy and
rehabilitation of people diagnosed with dementia in the early stages,’ Dementia: The
International Journal of Social Research and Practice 1, 2, pp.141–156.
35 M. Friedell, January 2001, private email correspondence.
36 M. Friedell, ‘A nine-step rehabilitation program for early Alzheimer’s Disease,’
http://members.aol.com/MorrisFF/Eight.html.
37 M. Friedell, August 2000, private email correspondence.
38 F. Drysdale, 2001, ‘Numero,’ http://www.fdc.com.au/numero.
39 M. Goldsmith, 1996, Hearing the voice of people with dementia, Jessica Kingsley Pub-
lishers, London, pp.58–59.
40 D. Bagnall, 2004, op. cit.
41 J.R. Dudley, 1997, Confronting the stigma in their lives, Thomas Books, Illinois, p.9.
42 T. Kitwood, 1995, ‘A dialectical framework for dementia,’ In R.T. Woods et al. (eds),
Handbook of clinical psychology of ageing,’ pp.267–282.
43 V. Frankl, 1984, Man’s search for meaning, Washington Square Press, New York, p.38.
44 E.B. MacKinlay, 2001, The spiritual dimension of ageing, Jessica Kingsley Publishers,
London.
45 E.B. MacKinlay (ed.), 2002, Mental health and spirituality in later life, Haworth Pastoral
Press, New York.
46 C. Boden, 1998, p.49. op. cit.
47 E.B. MacKinlay (ed.), 2002, op. cit.
48 In S. Ratcliffe, 2000, op. cit., p.201.
49 In S. Ratcliffe, 2000, op. cit., p.342.
50 P. Tillich, 1963, Systemic theology vol.3. op. cit., University of Chicago Press, Chicago.
51 M. Friedell, October 2000, private email correspondence.
52 S. Garnett, June 2004, private email correspondence.
53 S. Garnett, July 2004, private email correspondence.

54 In S. Stewart, 2003, op. cit., p.59.
55 V. Frankl, 1984, op. cit.
56 V. Frankl, 1984, op. cit., p.87.
57 B. McNaughton, June 2004, private email correspondence.

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What are some of the challenges discussed in the book?

Hearing the Voice of People with Dementia

The Spiritual Dimension of Ageing

A Guide to the Spiritual Dimension of Care for People

Perspectives on Rehabilitation and Dementia

Jessica Kingsley Publishers

First published in 2005

Copyright © Christine Bryden 2005

Reprinted twice in 2005

Library of Congress Cataloging in Publication Data

British Library Cataloguing in Publication Data

ISBN-13: 978 1 84310 332 5

Printed and Bound in Great Britain by

1 A ‘Roller-coaster’ Journey Since Early 1998 15

I was sitting, curled up in my favourite chair, with my cat purring

It has been a long and interesting struggle of advocacy for people

become a reality without the encouragement and enthusiasm of

I’m really getting better!!!!

M y eldest daughter, Ianthe, and I were sitting in the quiet,

thought it was only a little problem, which could be excused due to

The neurologist’s re-assessment in 1998

After talking with me for a little while longer, the neurologist

A new lease of life!

It was my friend Liz MacKinlay, the priest and gerontological

But I was worried. How would I cope trying to listen to lectures,

Wishful thinking, or a vision of the future?

introductions agency, and wondered out loud if God could work

I was overcome, not knowing whether to take off my gloves to

Paul believed that God probably existed, and he went to church at

When you lie down to sleep

Vision becomes reality!

A FEW WEEKS later, I drove my little green car to Paul’s house, as we

IN JULY 1999, I was sitting in my counselling class at St Mark’s, with my

Challenging the stereotype

I t took me three years before I could speak openly about my

Finding help and support

looking after me, in my incapacity and my inability to communicate. I

I STRUGGLED ON as best I could, wrote my book, and dealt with the

was helping, doing something worthwhile. I felt valued, and given

Battling the stereotype – if I can speak then I do not have dementia!

THIS CONTINUING BATTLE to overcome such negative attitudes adds to

Meeting my ‘cyber’ friends

otherwise we were not really people with dementia? How were we

Local and national advocacy

Taking the first step

everyone’s dementia, and discussing our struggle to be heard. We were

For the first ‘getting to know you’ session, we stood anxiously at

and intimate partners in our personal relationships. The day after we

Haven’t I heard about ‘biological inferiority’ somewhere

Teddy’s world travels

Teddy in his box

A whirlwind of media and packing

to communicate, to share, and to work together to try to achieve

DASN friends in Montana, from left: Phil,

Alice, Mary, Morris and me