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Improving the Quality of Life of People with Dementia Through Dramatherapy

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Improving the Quality of Life of People with Dementia Through Dramatherapy Pulled through a hedge backwards: Improving the Quality of Life of People with Dementia through Dramatherapy Esme Joanna Jaaniste, BA (Hons.), Dip. Ed., Dip Dramatherapy, AthR (Drama) School of Social Sciences and Psychology Submitted in fulfilment of the requirements for the degree of Doctor of Philosophy at the University of Western Sydney June, 2013 Statement of Authentication The work presented in this thesis, entitled Pulled through a hedge backwards: improving the quality of life of people with dementia through dramatherapy, is to the best of my knowledge and belief, original except as I have indicated in the text. I hereby declare that I have not submitted this material, either in full or in part, for a degree at this or any other institution. …………………………………………… (Signature) i Dedication Our approach derives from a phenomenology that restores the sense of the experienced world, and from an archetypal psychology that restores the autonomy of the imagination as the place between the empirics of the material world and the literalisms of the world of spirit. Robert Sardello Thank you to all those teachers, students, colleagues and the inspiring fieldwork participants who have shared their ideas and themselves in the coming together of this thesis. ii Acknowledgements Without the help and support of many people, it would not have been possible for the journey of this work to have been undertaken. Firstly, I wish to thank my supervisors. Professor Gerald Muench gave advice early on in the areas of pharmacology and dementia and provided feedback and guidance at key moments of the project. Dr. Shameran Slewa-Younan inspired and encouraged me to see among other things that I could navigate the world of statistics. With her help, and that of A/Professor Richard Ollerton of the School of Computing, Engineering and Mathematics to whom she sent me for additional understanding, I was able to gain the confidence to manage the analysis needed for the work. Dr. Sheridan Linnell, my primary supervisor, was consistently an amazing, inspiring, judicious and generous mentor and colleague. In 2008, Professor Richard Fleming asked me to give a speech at a conference on dementia. This speech, together with the brief performance I co-directed there with Dr. Jill Westwood, brought me together with colleagues from Dementia Care Australia, who introduced me to the area of the arts in dementia care. Thanks are also due to my business partner and colleague, Adrian Lania, Dr. Elvira Zilliacus (also my long-suffering transcriber) and Dr. Tiina Jaaniste, who all gave me help and understanding in making sense of the statistics. I am indebted to Dr. Christina Virago, who read some of my work and made helpful suggestions and encouraged me early on in the process when I wondered whether I had taken on something I could not finish. Thank you, too, to Dr. Constance Ellwood for her excellent editing. Thanks go to the staff at Alzheimer's Australia (NSW) in Sydney and Newcastle who gave me valuable assistance in setting up and facilitating sixteen sessions of the dramatherapy and film groups. I am grateful also to the three wonderful art therapy students, two of whom filmed and photographed work from the dramatherapy sessions which they also took iii part in, and the third who ran the film group single-handedly in Newcastle. Their quick-thinking ability to grasp the requirements of a dramatherapy group and a two-arm study enriched the quality of the fieldwork. An audio recording of the ethnographic drama For love of the world, which accompanies this thesis, was produced and edited by Buzz Pringle for a fraction of the normal cost in his professional studio. My thanks to him and to the actors: Amanda and Steve Vella, Joanne Strauss and Bruce Disney for their able and generous input into their roles. My clinical supervisor, Dr. Rosemary Faire, assisted me at every step of the preparation, duration and reflection on the fieldwork using drama, visual art, song, embodiment and poetry. I offer thanks to my friends and colleagues in Australia and overseas who have asked me curly questions about the thesis topic, enabling me to go deeper, and have supported me through more than three years of otherwise solitary engagement with my computer. Also to the members of my Sardello study group. To my family: to the spirits of my parents, David and Daphne and sister Bryony who have inspired me, and to my godmother, children and siblings on both sides of the world who have supported me in this endeavour, I thank you. Special thanks go to my husband, Rein, who has been long-suffering and uncomplaining in his moral and physical support of me in this process. My heartfelt thanks go to the courageous and open people who gave of themselves so that this research could be undertaken: the seventeen people with dementia and their carers who offered their trust and goodwill so that the research could be carried out. I offer thanks to the participants for their engagement and cooperation. The legacy of this work rests in their willingness and enthusiastic support of the project. iv Table of contents Dedication ................................................................................................................. ii Acknowledgements ................................................................................................... iii Abstract .................................................................................................................... xii List of Acronyms ....................................................................................................... xiv List of Illustrations .................................................................................................... xvi List of Tables ........................................................................................................... xvii List of Figures .......................................................................................................... xvii Prologue ............................................................................................................... 1 Chapter 1: Introduction ......................................................................................... 5 Why I have chosen to use a mixed methods approach to this question......................... 6 How will I be dealing with and triangulating the research method? .............................. 8 Pragmatism – a practical approach to the project ........................................................ 11 Introduction to dementia, and in particular to Alzheimer’s Disease (AD) .................... 12 Global spread of AD and its consequences .......................................................................... 13 Alternatives to the "disease narrative" ............................................................................... 15 Feeling intelligence as part of the dementia picture ........................................................... 16 Alzheimer’s Disease (AD) .............................................................................................. 19 Diagnostic criteria for 294.1 x dementia of the Alzheimer’s type ........................................ 19 Vascular Dementia (VD) ...................................................................................................... 21 Lewy Bodies Dementia (LBD) .............................................................................................. 22 Grief and loss ................................................................................................................ 22 Post-traumatic stress disorder (PTSD) .......................................................................... 25 Dementia and spirituality ............................................................................................. 27 Dementia, quality of life and spirituality ...................................................................... 29 End of life for people with dementia ............................................................................ 30 The question of soul and its impact in ageing and dementia ....................................... 32 The structure of this thesis ........................................................................................... 33 Chapter 2: Situating this research in relation to the literature relevant to dramatherapy with people who have dementia .................................................. 41 What is dramatherapy? ................................................................................................ 45 v Supervision for dramatherapists ......................................................................................... 46 Four models of dramatherapy ...................................................................................... 47 The anthropological model and shape-shifting ................................................................... 49 Distancing and developmental models ........................................................................ 51 Embodiment, Projection and Role (EPR) ............................................................................. 52 Kitwood's Malignant Social Psychology and the EPR/RPE paradigms .................................. 54 Developmental Transformations (DvT) ........................................................................ 56 Concepts, practices and evidence ................................................................................ 57 Session structure ...............................................................................................................
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