Music, Dementia and Everyday Life within a Community Day Care Setting Elizabeth Dennis Supervisors: Prof Tia DeNora Dr Tom Rice Submitted by Elizabeth Dennis, to the University of Exeter as a thesis for the degree of Doctor of Philosophy in Sociology by Research, April 2016 This thesis is available for Library use on the understanding that it is copyright material and that no quotation from the thesis may be published without proper acknowledgement. I certify that all material in this thesis which is not my own work has been identified and that no material has previously been submitted and approved for the award of a degree by this or any other University ................................................. ABSTRACT This multi-method ethnographic study explores the everyday lives of people with dementia living in the community, cared for by a spouse or family member. It examines three case studies of individuals with early to moderate stage dementia. The latter were attending a weekly day-centre group and this thesis explores their interactions with each other, individual histories, tastes, habits and daily habits. The primary aim of the research was to explore the natural role of music in the lives of these subjects as individuals and as a group. In doing so, this undertaking shows how, in supportive environments, agency and capacity can flourish, leading to constituents of ‘re-covery’, to use mental health terminology. This highlights some of the important matters that are overlooked where perspectives emphasise dementia as a disease of the brain. By contrast, it illuminates the role of social and environmental factors and their contribution to well-being. After initial interviews with each individual and in some cases, members of their families, five months of participant observation followed, primarily located in a home- based day care service. The data set was formed from 178 hours of field observations, a number of audio-recordings made during the sessions, and detailed field notes. This study shows that a close-up focus on the minute details of how a person lives their life and ‘dwelling’ with them for an extended period will illuminate many of the processes that work toward maintaining the well-being of people with dementia and facilitate their revitalisation. Significantly, it was the integration of music within and alongside the everyday tapestries of activities and events which helped create a space for connection and pleasure. The thesis findings reveal how the participants in this research repeatedly demonstrated expertise and insight, albeit not always verbally expressed, but shown in and through forms of practice as regards what was required for their well-being and how to achieve it. This achievement, however, also relied upon thoughtful and creative collaboration with others (carers, family members, etc.), working alongside the participants for mutually beneficial ends. The thesis concludes that what is required for people with dementia and their well-being does not differ substantially 2 from what is generally required by humankind, but there are certain skills and modes of co-operative assistance that are necessary to ensure and maintain the well-being of people with dementia. 3 ACKNOWLEDGEMENTS Firstly, I acknowledge my huge debt of gratitude to my supervisor, Professor Tia DeNora, who has remained unfailingly supportive and inspiring throughout the course of this PhD. She has been consistently generous in a myriad of ways, far above and beyond the call of duty. Without her gentle, patient and skilful guidance, the completion of this thesis would not have been possible. Thanks also go to my second supervisor, Dr Tom Rice for his input and helpful comments, as well as to Professor Gary Ansdell. In addition, recognition must go to my fellow members of the SocArts Group, whose encouraging presence has eased this process considerably. I am most grateful to the University of Exeter for its funding of this project. To all those with whom I had the privilege of meeting during the course of my fieldwork. I particularly wish to express my thanks to ‘Poppy’; getting to know her and her ways of working has been immensely joyful and hugely influential. Finally, heartfelt appreciation is extended to each individual who agreed to be interviewed by me and/or allowed me to observe their time at the respective local day care (LDC). Thank you for being so open-minded and teaching me your other kinds of knowledge. 4 Table of Contents ABSTRACT ................................................................................................................ 2 ACKNOWLEDGEMENTS .......................................................................................... 4 FIGURES AND TABLES ............................................................................................ 8 ACCOMPANYING MATERIALS ................................................................................ 9 CHAPTER ONE - INTRODUCTION ......................................................................... 10 1.0 Background and Backstory ............................................................................. 10 1.1 Research Focus; Questions and Clarification ................................................. 14 1.2 Thinking Ecologically....................................................................................... 19 1.3 Beginnings ...................................................................................................... 21 1.4 Dementia and the Self..................................................................................... 24 1.5 Identity and Musical Lives ............................................................................... 27 1.6 Musical Miracles? ........................................................................................... 29 1.7 Neuromania .................................................................................................... 31 1.8 Naturalistic Enquiries and Local Ecologies ..................................................... 33 1.9 Summary of the Research Framework ........................................................... 33 1.10 Organisation of the Thesis ............................................................................ 34 CHAPTER TWO: LITERATURE REVIEW ............................................................... 36 2.0 PART ONE: DEFINITIONS OF DEMENTIA .................................................... 36 2.1 Diagnosis of Dementia – the Complexities...................................................... 38 2.2 Models of Treatment ....................................................................................... 39 2.3 Medicalisation ................................................................................................. 41 2.4 Positioning ...................................................................................................... 43 2.5 Tacit Knowledge ............................................................................................. 47 2.6 Who Cares? And What Are the Challenges? .................................................. 49 2.7 The Impact on the Caregiver ........................................................................... 51 2.8 Coping Strategies ........................................................................................... 54 2.9 The Influence of Adult Mental Health .............................................................. 56 2.10 PART TWO: MUSIC AND DEMENTIA .......................................................... 57 2.11 Preservation of Musical Capacity .................................................................. 58 2.12 Incorporation of Unfamiliar Recorded Music ................................................. 59 2.13 Incorporation of Familiar Recorded Music ..................................................... 60 5 2.14 Music and Memory ........................................................................................ 61 2.15 Active Music Engagement ............................................................................. 62 2.16 Singing Applications ...................................................................................... 62 2.17 Home-based Music and Dementia Literature ................................................ 64 2.18 Omissions in the Music and Dementia Literature .......................................... 67 2.19 Time and Place ............................................................................................. 70 2.20 Privileging the Professional ........................................................................... 73 2.21 Networks and Attachments ........................................................................... 75 2.22 Music in Everyday Life .................................................................................. 80 CHAPTER THREE: ENGAGING A PERSON WITH DEMENTIA IN RESEARCH – METHODOLOGICAL IMPLICATIONS ..................................................................... 85 3.0 The Current Status .......................................................................................... 85 3.1 Personhood within the Context of Dementia Research ................................... 88 3.2 Methodological Approaches ............................................................................ 91 3.3 Grounded Theory and Ethnography ................................................................ 92 3.4 What are the Obstacles to Engagement in Research? ................................... 95 3.5 Consent and Decision-making