Will I Still Be Me?

Finding a Continuing Sense of Self in the

Lived Experience of Dementia

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by the same author

Dancing with Dementia

My Story of Living Positively with Dementia
Christine Bryden
ISBN 978 1 84310 332 5
eISBN 978 1 84642 095 5
Audio book ISBN 978 1 78450 079 5

Who Will I Be When I Die?

Christine Bryden
ISBN 978 1 84905 312 9
eISBN 978 0 85700 645 5

Nothing About Us, Without Us!

20 Years of Dementia Advocacy
Christine Bryden
ISBN 978 1 84905 671 7
eISBN 978 1 78450 176 1
WILL I STILL
BE ME?
Finding a Continuing Sense of Self in
the Lived Experience of Dementia

CHRISTINE BRYDEN

Jessica Kingsley Publishers

London and Philadelphia
First published in 2018
by Jessica Kingsley Publishers
73 Collier Street
London N1 9BE, UK
and
400 Market Street, Suite 400
Philadelphia, PA 19106, USA
www.jkp.com
Copyright © Christine Bryden 2018
Front cover image source: iStockphoto®.
All rights reserved. No part of this publication may be reproduced in any
material form (including photocopying, storing in any medium by electronic
means or transmitting) without the written permission of the copyright owner
except in accordance with the provisions of the law or under terms of a licence
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reproduce any part of this publication should be addressed to the publisher.
Warning: The doing of an unauthorised act in relation to a copyright work
may result in both a civil claim for damages and criminal prosecution.
Library of Congress Cataloging in Publication Data
Names: Bryden, Christine, 1949- author.
Title: Will I still be me? : finding a continuing sense of self in the lived
experience of dementia / Christine Bryden.
Description: London ; Philadelphia : Jessica Kingsley Publishers, 2018. |
Includes bibliographical references and index.
Identifiers: LCCN 2018002347 | ISBN 9781785925559 (alk. paper)
Subjects: LCSH: Bryden, Christine, 1949---Mental health. |
Dementia--Patients--Biography. | Alzheimer’s disease--Patients--Biography.
Classification: LCC RC523.3 .B796 2018 | DDC 616.8/310092 [B] --dc23
British Library Cataloguing in Publication Data
A CIP catalogue record for this book is available from the British Library
ISBN 978 1 78592 555 9
eISBN 978 1 78450 950 7
 Contents

Acknowledgements . . . . . . . . . . . . . . . . . . . . . . 9

Preface . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

1. Am I Losing My Self? . . . . . . . . . . . . . . . . . . . . . 15

2. Re-interpreted and Re-packaged at Diagnosis! . . . . . . 19

3. How Can I Write a Book? . . . . . . . . . . . . . . . . . . 27

How can I overcome cognitive difficulties? . . . . . . . . . . . . 31
How can I find meaning? . . . . . . . . . . . . . . . . . . . . . . 34
Why the idea of loss of self impacted negatively on me . . . . . 37

4. Challenging Loss of Self in Dementia . . . . . . . . . . . 43

5. ‘I Who Know That I Exist Inquire Into What I Am’ . . . 51

6. Embodied Self . . . . . . . . . . . . . . . . . . . . . . . . . 59
Scientific views of embodiment . . . . . . . . . . . . . . . . . . . 63
Scientific views of recall dysfunction . . . . . . . . . . . . . . . . 66
Philosophical views of embodiment . . . . . . . . . . . . . . . . 68
Retention of embodied virtues . . . . . . . . . . . . . . . . . . . 71
7. Relational self . . . . . . . . . . . . . . . . . . . . . . . . . 75
Relating to what gives us a sense of meaning . . . . . . . . . . . 78
Relating from birth . . . . . . . . . . . . . . . . . . . . . . . . . . 81
Capacities for relationship . . . . . . . . . . . . . . . . . . . . . . 84

8. Narrative self . . . . . . . . . . . . . . . . . . . . . . . . . 95
Recall and narrative . . . . . . . . . . . . . . . . . . . . . . . . . 97
Language and narrative . . . . . . . . . . . . . . . . . . . . . . . 99
Present moment and narrative . . . . . . . . . . . . . . . . . . . 100

9. Upheld by Others in the Fullness of Our Identity . . . . 103

We need to be supported in an inclusive
community of equals . . . . . . . . . . . . . . . . . . . . . . . 106
How can the community support and include us? . . . . . . . . 109

10. Who Am I Now If I No Longer Have Dementia? . . . . . 115

11. Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . 119

References . . . . . . . . . . . . . . . . . . . . . . . . . . . 131

Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 139
 Acknowledgements

This book is drawn from secular aspects of my thesis for

a PhD, which was supported by a Public and Contextual
Theology Research Centre Scholarship from the Charles
Sturt University School of Theology, St Mark’s National
Theological Centre. My PhD supervisors – Professor
Elizabeth MacKinlay and Dr Jane Foulcher – provided
invaluable advice and guidance. Paul Bryden gave very
helpful sub-editorial assistance.
I am very thankful for the insights of the many people
with dementia who I have met over the years, whose stories
are reflected in the vignettes introducing the various
sections of the book.
Jessica Kingsley and her wonderful staff have been very
supportive of me over the years, and I am particularly
grateful to their enthusiastic response to my thesis outline,
as well as to the final document. Jessica Kingsley Publishers
have a significant list of books that reach out and support
people with dementia and their families, and I am humbled
to be one of their authors.

9
 Preface

I was diagnosed with dementia in 1995, over 20 years ago

now. I have easily outlasted all predictions made for my
prognosis, and indeed any loss of self, and I still feel very
much ‘me’. As I often say, ‘I’m still here!’ I have come to see
that the outsider’s view of loss of self is unhelpful, and does
not reflect the true insider’s experience of those of us living
with dementia. I can bear witness to my own experience
of restoring my life after a traumatic diagnosis, as well as
attesting to the many stories of others who are living with
dementia and continue to live their lives full of meaning.
I have used vignettes to introduce the various sections
of the book, which are based on the experiences of
many of the people living with dementia who I have met
over the years. I have changed all names and removed
any identifying material, in order to ensure their privacy.
I have also conflated some of the experiences that have
been shared with me, in order to cover the gamut of these
experiences, but nonetheless the resulting pictures are a
valid representation of a whole range of perspectives on
living with dementia.

11
 WILL I STILL BE ME?

I hope that this book will help society to see people with
dementia, like myself, with new eyes, and realise that there
is in fact no loss of self in dementia, although our cognitive
self is indeed changing and altering our experiences of the
world. The idea of loss of self in dementia is oppressive
and leads to an overwhelming fear, but what is the proof?
Up until now, all we have had are the opinions of outside
observers; no one living with dementia has described this
concept from the insider’s view. I want to challenge
this story of total loss of all aspects of self in dementia:
we are not disappearing, nor are we dying in small steps,
and our families are not losing us bit by bit. We are fully
present, even though we are gradually interacting with,
and experiencing, the world differently.
I suggest that three aspects of our sense of self continue
throughout the lived experience of dementia:

Embodied self: my sense of being embodied as an ‘I’

with first-person feelings about the world around
me, able to distinguish self from non-self.

Relational self: my sense of being an embodied self in

relationships with others and with what gives me a
sense of meaning.

Narrative self: my sense of being able to find meaning

in life and develop a sense of identity in the present
moment.

My aim is to encourage society to look beyond the dom-

inant story of loss of self in dementia, so that people with all
varying cognitive and physical capacities can be included

12
 Preface

and welcomed as equals. I seek in particular to transform

society’s views, towards accepting that there is a continuing
sense of self throughout the lived experience of dementia,
so that people with dementia and their families can be
better supported in inclusive and diverse communities.
I look to a future in which people with dementia are
included as equals within such communities, rather than
being regarded as defective autonomous individuals.
In a diverse community, people of all varying physical
and cognitive capacities, who have difficulties in today’s
fast-paced world, can be included as equals, where what is
important is who we are, not what we do. We are all human
beings, not human doings. This is good news for all those of
us living with dementia, as we are who we are.
In a community that emphasises diversity and equality,
we can feel welcomed and as if we belong, despite our
communication problems and recall difficulties. Others can
come alongside us in our present moment, carrying
our story, and thereby challenging the story of loss. We
might need help in finding meaning and nourishing our
spirit, but we are still fully present alongside others in
this community. Highlighting what remains in dementia,
my aim is to encourage society to see people living with
dementia with new eyes.
Christine Bryden PhD
Person living with dementia, advocate and author
Adjunct Research Fellow, Public and Contextual Theology
Research Centre, Charles Sturt University Australia
February 2018

13
 1
Am I Losing
My Self?

The journey of becoming, of leaving behind previous

perceptions of who we are, is common to us all, as part of
our life’s narrative. We discover new aspects of our selves
as time goes by. Yet those of us diagnosed with dementia
fear a very different journey – one of loss, of losing our
relationships, not only with others, but with what gives us
meaning in life. We wonder if and when we will experience
a future loss of self. My diagnosis with dementia was in
1995, and I have published several works since that time,
reflecting on the lived experience with an insider’s view
(Bryden 2002, 2005, 2012, 2015a, 2015b, 2016; Bryden
and MacKinlay 2002). These publications were aimed at
providing an alternative view to the dominant story of
dementia through the lens of my lived experience. They
tracked my changing sense of self, challenged the common
perceptions of dementia, and highlighted some of my fears
of future loss.

15
 WILL I STILL BE ME?

In this book I explore in much more detail the key issue

emerging from this body of work, which is the supposed
loss of self in dementia. This idea that we might lose our self
due to dementia overwhelms us at the time of diagnosis,
and we feel oppressed by the surrounding views of society
that this is what faces us now, or at some time in the future.
For example, it is common to hear such offhand comments
as, ‘She’s no longer there’ or ‘He is slipping away to
dementia’, which demonstrate the usual view of dementia
as being accompanied by a loss of self. This view of loss of
self has an extremely negative impact on those of us being
diagnosed with dementia, and cannot be underestimated.
Facing a possible future loss of self results in a paralysing
fear, which I expressed in the title of my first book, Who
Will I Be When I Die? (Bryden 1998, rev. 2012). This was
written shortly after my diagnosis, when I felt extremely
fearful of the future, and withdrew from social contact due
to such negative views.
In this book, I am looking at dementia from the inside
out, using narrative as ‘a crucial conceptual category for…
depicting personal identity’ (Hauerwas and Jones 1989,
p.5), revealing the self in its indivisible unity of body and
mind (Crites 1971, p.85). Narrative is a ‘qualitative or
interpretative research method…[in which] researchers
study things in their natural settings, attempting to make
sense of and interpret phenomena in terms of the meaning
people bring to them’ (Moen 2006, p.61). It is very useful
for exploring a continuing sense of self within the lived
experience of dementia, searching for meaning from
within the setting, in order to transform the understanding

16
 Am I Losing My Self?

of ‘that experience for [myself] and others’ (Clandinin and

Roziek 2006, p.42).
I examine my inner history of self, which gives a very
different perspective to ‘the outer history of things’ (Neibuhr
1941, pp.33, 30). From this inner perspective, I describe
my disturbed sense of time, rather than an accurate
awareness of chronological time; therefore my narrative
is not based on precise facts, but on a subjective search
for meaning. It builds on my existing body of work in a
‘continuously developing narrative that is constantly
forming and changing form’ (Moen 2006, p.60), aiming to
give an insider’s perspective of a sense of self in dementia,
and continuing to challenge the dominant story of loss.
Writing a book is not at all easy at the best of times,
and now there are extensive challenges due to my
dementia. These make the process of writing and analysis
more difficult, yet at the same time more authentic,
because my increasing impairment gives insight into my
sense of self from within the lived experience. I live with
dementia and can reflect both about, and from within, my
difficulties and fears in order to delve deeper into meaning.
Impairment has invaded my present moment in what feels
like a folded sense of time, so I am continually reminded
of loss. This can even be seen in my various publications,
in which there is a conflict of tenses between being and
becoming, and loss and gain. I have attempted to counter
the discourses of loss with an alternative story, yet on
occasion I keep returning to a story of impairment. I feel
drawn downwards into the spiral of the usual negative view

17