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