Maggie Ellis PhD thesis.PDF - University of St Andrews

296 Pages·2009·4.01 MB·English

by  Maggie Ellis

MAINTAINING PERSONHOOD AND SELF-IMAGE IN
DEMENTIA: AN EXPLORATION OF
COLLABORATIVE COMMUNICATION
Maggie P. Ellis
A Thesis Submitted for the Degree of PhD
at the
University of St. Andrews
2009
Full metadata for this item is available in the St Andrews
Digital Research Repository
at:
https://research-repository.st-andrews.ac.uk/
Please use this identifier to cite or link to this item:
http://hdl.handle.net/10023/844
This item is protected by original copyright
Maintaining Personhood and Self-Image
in Dementia: An Exploration of
Collaborative Communication

Maggie P. Ellis

Submitted for the Degree of Doctor of Philosophy
University of St Andrews

February, 2009
ABSTRACT

The main aim of this thesis was to explore the maintenance of personhood and
self-image in dementia by way of facilitating collaborative communication between
people with dementia and their caregivers/interaction partners. As such, the roles of
the person with dementia and the interaction partner were examined in each study
within the realms of the ‘Collaborative Personhood Model’.
Findings of the first study highlighted strategies used by people with mild to
severe dementia to maintain social interactions, to save-face and to maintain and
project a sense of self-image in a reminiscence situation. The impact of introducing a
family member as the interaction partner in a similar reminiscence-based situation
using personal photographs was then explored. The findings of this study indicated
that the personal nature of the photographs can create conflict between the person with
dementia and her family member. Crucially, these studies illuminated the supportive
role that the communication partner must adopt in order to successfully facilitate
people with dementia to maximise their retained communication skills.
Communication and sense of self was then examined in an individual with very severe
dementia with some retained speech. The findings of this study illuminated the
potential of imitation in communicating with people at this stage of the illness. These
findings were then built upon by exploring the use of Intensive Interaction (II) in a
person with very advanced dementia with no retained speech. Findings of this study
indicated retained awareness of self and functional communication skills at very late
stages of dementia. Finally, this study was expanded using a modified version of II
(Adaptive Interaction) in a small group of individuals with very severe dementia with
II
very little or no retained speech. These findings indicated an unprecedented desire and
ability to communicate in people with such severe dementia.
Taken as a whole, these studies highlighted the adaptive and collaborative role
that the interaction partner must adopt in order to facilitate the maintenance of
personhood and self-image in people with dementia. More specifically, the interaction
partner must adjust to the communicative repertoire that is maintained at each stage of
dementia and in each individual. The ‘Collaborative Personhood Model’ represents an
attempt to explain how this might be achieved.
III
I, Maggie P. Ellis, hereby certify that this thesis, which is approximately 50,000
words in length, has been written by me, that it is the record of work carried out by
meandthat it has not beensubmittedinanyprevious applicationforahigherdegree.
I was admitted as a research student in May2002 and as a candidate for the degree of
Ph.D.inPsychology; the higherstudyforwhichthis is arecordwas carried out inthe
UniversityofSt Andrews between2002 and2009.
Date21.10.09 signatureofcandidate
I hereby certify that the candidate has fulfilled the conditions of the Resolution and
Regulations appropriate for the degree of Ph.D. in the University of St Andrews and
that thecandidateis qualifiedtosubmit this thesisinapplicationforthat degree.
Date21.10.09 signatureofsupervisor
In submitting this thesis to the University of St Andrews we understand that we are
giving permission for it to be made available for use in accordance with the
regulations of the University Library for the time being in force, subject to any
copyright vested in the work not being affected thereby. We also understand that the
title and the abstract will be published, and that a copy of the work may be made and
supplied to any bona fide library or research worker, that my thesis will be
electronically accessible for personal or research use unless exempt by award of an
embargo as requested below, and that the library has the right to migrate my thesis
into new electronic forms as required to ensure continued access to the thesis. We
have obtained any third-party copyright permissions that may be required in order to
allowsuchaccess andmigration,orhave requestedtheappropriateembargobelow.
The following is an agreed request by candidate and supervisor regarding the
electronicpublicationofthis thesis:
Access to Printed copy and electronic publication of thesis through the University of
St Andrews.
Date21.10.09 signatureofcandidate
signatureofsupervisor
ACKNOWLEDGEMENTS

First and foremost, I would like to give special thanks to my supervisor,
colleague and friend Dr Arlene Astell for her guidance and support over the years. You
are an outstanding teacher and I am extremely proud to have been one of your
postgraduate students. I cannot thank you enough and sincerely hope to continue
working with you in the future.
Special thanks also go to Allison Lee who as one of my oldest (and most
sensible) friends first sparked my interest in dementia. I would not have reached this
milestone without you. You have created a monster!
I wish to thank all who took part in this research – the professional and family
caregivers, managers and in particular, the individuals with dementia who continue to
inspire me. Special thanks are extended to Mrs Edie Adams and her daughter Liz Evans
for their crucial roles in this work.
My colleagues from the CIRCA/LIM Projects team deserve a special mention of
gratitude – Dr Norman Alm, Dr Richard Dye, Mr Gary Gowans, Mr Jim Campbell and
Mr Phil Vaughan. I would also like to extend my appreciation to my second supervisor,
Professor Steve Reicher for his enthusiasm and support.
My thanks are also extended to all students who have helped me with data
collection and reliability, namely, Elaine Cameron, Jason Yuan, Celine Eggen and
Sarah Birch. I would also like to give special thanks to Dr Michelle ‘Shell-Doll’
O’Neill and Dr Paul Escalante-Mead for their unfailing friendship, advice and
optimism. Also, (soon to be Dr) Phil Riley deserves a special thank you for her
participation in the 3-legged race towards the finish line. I promise to return the favour
when the time comes. You’re a star!
Hugs go out to my family and friends and to my dogs (past and present) for
putting up with me, encouraging me and making me laugh (cheers Carol ). Finally, I
would like to dedicate this thesis to my dad, Harry Ellis who has waited a long time for
this moment and whose constant reminders to that end have helped to maintain my
focus. Thanks dad!

IV
CONTENTS

Abstract II
Acknowledgments IV
Table of Contents V
Tables XII
Figures XVI

CHAPTER ONE: INTRODUCTION

1 Introduction 1
1.1 The Social Nature of Humans and the Significance of
Communication 1
1.2 The Fundamentals of Human Communication 1
1.3 Personhood, the Self and Intersubjectivity 2
1.4 Monologic Models of Interpersonal Communication 4
1.5 Dialogic Models of Communication 5
1.6 The Collaborative Model (Clark & Brennan, 1991) 7
1.7 Disadvantaged Communicators 8
1.8 Focus on Dementia 11
1.9 Thesis Outline 12

CHAPTER TWO: THE IMPACT OF DEMENTIA ON THE
SELF, INTERPERSONAL COMMUNICATION AND
RELATIONSHIPS

2.1 Communicating Self 16
2.2 Defining and Measuring Dementia 19
V
2.3 The Impact of Dementia on Communication 22
2.4 The Social Impact of Dementia and Its Associated Communication
Difficulties 30
2.4.1 Impact and interpretation of cognitive changes in dementia 30
2.4.2 Attitudes to people with dementia 33
2.4.3 Distressed behaviour 35
2.4.4 Malignant social psychology 36
2.5. Severe Dementia 40
2.6. The Significance of Self in Dementia 42

CHAPTER THREE: RETAINED COMMUNICATION
SKILLS AND SELF-AWARENESS IN DEMENTIA:
FACILITATIVE STRATEGIES

3.1 Retained Communication Skills: Overview 43
3.2 The Person-Centred Approach 44
3.3 Retained Communication Skills in Mild to Moderate Dementia 45
3.4 Person-Centred Approaches to Improving Interpersonal
Communication and Sense of Self in Mild to Moderate Dementia 52
3.4.1 The Communication Enhancement Model (Orange et al., 1995) 52
3.4.2 FOCUSED (Ripich, 1994) 53
3.4.3 Bayles (2003) 54
3.4.4 The potential of reminiscence in maximising retained
conversational skills and self-image 56
3.5 Retained Communication Skills and Sense of Self in Severe
Dementia 58
3.5.1 Validation Therapy (Feil, 1993) 62
VI
3.5.2 Habilitation Therapy (Raia & Koenig-Coste, 1996) 63
3.6 The ‘Collaborative Personhood Model’ 64
3.7 Ethical Issues 67
3.7.1. Ethical process 67
3.7.2. Ethical background 67
3.7.3. Main ethical issues 69

CHAPTER FOUR: STUDY 1 - THE IMPACT OF
DEMENTIA PROGRESSION ON PERSONHOOD AND
THE CONSTRUCTION OF SELF

4.1 Introduction 71
4.1.1 Study aims 74
4.2 Method 75
4.2.1 Participants 75
4.2.1.1. Ethical approval 76
4.2.1.2. Ethical procedure 76
4.2.2 Materials 76
4.2.3 Procedure 77
4.2.4. Coding of verbal responses 79
4.2.5. Interrater reliability 83
4.2.6. Data analysis 85
4.3 Results 86
4.3.1 Maintenance strategies 86
4.3.2 Face-saving strategies 89
4.3.3 Story-telling and the construction of self 91
4.3.4 ReT’s and the construction of self 95
VII
4.3.5 Interaction partner 101
4.4 Discussion 104
4.5 Conclusion 108
4.6 The Relevance of this Study to the ‘Collaborative Personhood
Model’ 111

CHAPTER FIVE: STUDY 2 - THE IMPACT OF FAMILY
MEMBERS ON THE COMMUNICATION BEHAVIOUR
AND SELF-AWARENESS OF PEOPLE WITH DEMENTIA

5.1. Introduction 112
5.1.1 The use of personal photographs in reminiscence 113
5.1.2 Awareness and the impact of expectations and perceptions 114
5.1.3 Study aims 115
5.2 Method 116
5.2.1 Participants 116
5.2.1.1. Ethical approval 117
5.2.1.2. Ethical procedure 117
5.2.2 Materials 118
5.2.3 Procedure 118
5.2.4 Coding of verbal responses 119
5.2.5 Interrater reliability 121
5.2.6. Data analysis 122
5.3 Results 122
5.3.1 Describing the photographs 122
5.4 Discussion 135
V III