CHALLENGES OF PERSON-CENTRED DEMENTIA CARE: A CRITICAL ETHNOGRAPHY OF CULTURE CHANGE IN LONG-TERM CARE by Elizabeth Ellen Kelson B.A, Trent University, 1989 M.A., Simon Fraser University, 2006 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY in THE FACULTY OF GRADUATE STUDIES (Interdisciplinary Studies) THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) January 2013 © Elizabeth Ellen Kelson, 2013 ! ABSTRACT To address shortcomings in traditional long-term residential care (LTRC), facilities are increasingly adopting person-centred care (PCC) approaches. Despite the proliferation of PCC models and discourses, there is limited understanding in gerontology of how such approaches are experienced on the ground. This dissertation addresses this gap through an ethnographic study of Cedar Grove, a large facility located in an urban centre in Western Canada that is undergoing culture change. During 12 months of fieldwork, I explored the range of issues this organization encountered as it endeavours to maintain the “person” at the centre of care. The purpose of this study is to contribute empirical data on how this orientation shapes daily life for residents, families, staff and administrators. This study is informed by the literatures of PCC and personhood theory, and it draws on a conceptual framework integrating critical, feminist and Foucauldian gerontology. It analyzes care across personal, interpersonal, and organizational levels, and considers the broader social-political-economic context of LTRC. Data generation employs multiple methods: participant observation, Dementia Care Mapping (DCM), group meetings, individual interviews, researcher-produced photographs, and a review of relevant organizational and policy documents. Findings reveal organizational tensions between ideals of safety and PCC, multifaceted challenges to relational care, and the importance of everyday activity toward social inclusion. Data suggest five key implications: 1) Intersectionality highlights residents’ disparate access to social inclusion and ways to support more heterogeneous populations, 2) Increased access to unstructured, everyday activity might address boredom and foster meaning in residents’ lives, 3) Job descriptions might better prioritize social care and !!" ! flexibility in work roles to better address issues of time constraints, workload, and resident acuity, all of which challenge PCC, 4) Organizational support for narrative-based biography is vital to overcoming systemic barriers to its use in practice. Finally, 5) A methodological implication of this study relates to how DCM facilitated insight into residents’ non-verbal expressions of personhood and bodily, affective communications. The mobilization of this research to practice during fieldwork highlights DCM’s ability to convey positive practice skills in a way that supports uptake, positively impacting residents’ quality of life. !!!" ! PREFACE Certificate of Approval University of British Columbia, Office of Research Services Behavioural Research Ethics Board UBC BREB Number: H09-03091 !#" ! TABLE OF CONTENTS ABSTRACT.............................................................................................................................. ii" PREFACE................................................................................................................................ iv" TABLE OF CONTENTS.......................................................................................................... v" ACKNOWLEDGEMENTS...................................................................................................... x" CHAPTER 1: INTRODUCTION: BACKGROUND AND SIGNIFICANCE ....................... 1" Research Problem ................................................................................................................. 6" Study Implications............................................................................................................. 9" Study Purpose and Objectives .......................................................................................... 9" Dissertation Overview .................................................................................................... 10" CHAPTER 2: REVIEW OF SELECTED LITERATURE.................................................... 12" Problematizing Traditional Care......................................................................................... 13" Transforming LTRC ........................................................................................................... 16" The Role of Personhood.................................................................................................. 16" The Role of Person-Centred Care................................................................................... 19" Culture Change Models .................................................................................................. 21" Applying Theory in Practice............................................................................................... 23" Communication Skills Training in Person-Centred Dementia Care .............................. 25" Resident Biography ......................................................................................................... 27" Challenges to Culture Change in LTRC ............................................................................. 31" Staffing Levels and Quality of Care................................................................................ 31" Defining Quality of Life .................................................................................................. 34" Expanding Concepts of Personhood and PCC—Conceptual Issues to Date ...................... 36" Embodiment .................................................................................................................... 36" The Physical Environment .............................................................................................. 37" Agency............................................................................................................................. 39" Relationship-Centred Care ............................................................................................. 40" Ethics in Person-Centred Care............................................................................................ 43" I/Thou and I/It Modes of Relating................................................................................... 44" Intentional and Non-Intentional Modes of Relating ....................................................... 45" #" ! Activity, Social Inclusion, and Exclusion in LTRC ........................................................... 47" Factors in Social Exclusion ............................................................................................ 49" Successful Aging and Activity ......................................................................................... 51" Activity, Well-Being, and Dementia in LTRC ................................................................. 54" Chapter Summary ............................................................................................................... 59" CHAPTER 3: CONCEPTUAL FRAMEWORK................................................................... 61" Critical Gerontology ........................................................................................................... 61" Foucauldian Gerontology ................................................................................................... 63" Feminist Gerontology ......................................................................................................... 70" Changing Culture: The “Person” in Care ........................................................................... 75" CHAPTER 4: RESEARCH DESIGN..................................................................................... 78" Methodology: Critical Ethnography ................................................................................... 79" Research Process................................................................................................................. 82" Entering the Field ........................................................................................................... 82" Study Site Description..................................................................................................... 84" Philosophical Orientation at Cedar Grove..................................................................... 85" Study Sample and Sampling Approach ........................................................................... 86" Recruitment and Consent ................................................................................................ 91" Data Generation .................................................................................................................. 93" Participant Observation.................................................................................................. 95" Shadowing..................................................................................................................... 100" Summary of PO at Cedar Grove ................................................................................... 100" Visual Data: Researcher-Produced Photographs ........................................................ 101" Dementia Care Mapping............................................................................................... 103" Group Meetings ............................................................................................................ 107" Individual Interviews .................................................................................................... 109" Review of Relevant Documents ..................................................................................... 111" Data Analysis and Interpretation ...................................................................................... 111" Introduction................................................................................................................... 111" Data Analysis .................................................................................................................... 114" Coding and Thematic Analysis ..................................................................................... 115" Analytic Lens: Citizenship ............................................................................................ 116" Analytic Lens: Intersectionality .................................................................................... 117" DCM Interpretation ...................................................................................................... 119" Document Review and Discursive Practices ................................................................ 120" Establishing Trustworthiness............................................................................................ 122" Reflexivity...................................................................................................................... 122" Power and Reflexivity in the Interview Process ........................................................... 124" #!" ! Positionality in the Field............................................................................................... 127" Reciprocity in the Field................................................................................................. 133" Representation and Voice ............................................................................................. 134" Ethical Concerns ............................................................................................................... 137" Study Limitations.............................................................................................................. 140" CHAPTER 5: THE SOCIAL WORLD OF CEDAR GROVE: RESIDENT VIGNETTES 143" Holly Street: Emilia, Fran, Hazel and Eva........................................................................ 145" Juniper Way: Hannah, Ruth, and Maria ........................................................................... 156" Chapter Summary ............................................................................................................. 163" CHAPTER 6: SAFETY FIRST: BALANCING RISK, PROTECTION, AND THE NEEDS OF THE PERSON ................................................................................................................ 165" Resident Safety: Exploring Policy and Practice at Cedar Grove...................................... 166" Introduction................................................................................................................... 166" Beyond Eden: The Impact of Care Philosophy............................................................. 167" The Structure of Safety: Stigma, Dementia, and Levels of Care .................................. 171" “Challenging Behaviours” ........................................................................................... 175" Preventing Falls: “Keep Mum Safe!” .......................................................................... 179" Surveillance and Space ..................................................................................................... 181" Mitigating Social Isolation: The Role of Private Companionship.................................... 183" Preventing Conflict ........................................................................................................... 187" Ethical Issues: Power, Advocacy, and the Role of the RCA ............................................ 189" Cedar Grove Staff: Physical Safety at Work .................................................................... 194" Lifts and Slings: A Bathing Care Encounter................................................................. 195" Evaluating Risk: Resident Im(mobility) ........................................................................... 199" Technological Supports and Policy Changes: Impact on the Ground ......................... 200" “There’s no time for kind, calm caring”: Time Constraints and Workload ................ 201" “Aggression” and “Violence”: A Vision for Prevention in Practice........................... 206" Collective Safety: Outbreaks, Quarantine and Infection Control ..................................... 211" Chapter Summary ............................................................................................................. 213" CHAPTER 7: CULTURAL PERSPECTIVES ON CARING: THE SIGNIFICANCE OF RELATIONSHIPS AT CEDAR GROVE............................................................................ 215" Resident Perspectives on Relationship in Care................................................................. 219" Dementia Care Mapping Data on Relationships in the SCU ....................................... 224" Staff Perspectives on Relationships in Care ..................................................................... 232" #!!" ! Dementia Care Mapping Data: Staff Perceptions of Implications for Practice .......... 233" Exploring the Digital Divide: Computer Access, Literacy, and the Role of the RCA... 238 Job Descriptions: The Duties and Responsibilities of the RCA.................................... 241" Administrative Perspectives on Culture Change: “It’s not the what, but the how”.......... 244" Achieving a Caring Culture: Promoting a Team Approach ......................................... 245" Organizational Documents and the Language of Care ................................................ 249" Family Perspectives of Relational Care............................................................................ 253" Chapter Summary ............................................................................................................. 260" CHAPTER 8: UNSTRUCTURED ACTIVITY AND SOCIAL ENGAGEMENT ............. 263" Resident Views on Activity and Social Engagement: Barriers to Participation .................................................................................................... 264" Everyday Activity and “Reality TV”: Watching Television Together............................. 267" Television, Dementia Care, and Power: Who’s in Control of the Remote? ..................... 273" Food and the Dining Experience: Everyday Meals, Unstructured Activity, and Celebrations ...................................................................................................................... 275 Everyday Dining: Menu Options, Costs, and Subjective Taste .................................... 276" The Dining Experience and Socialization..................................................................... 278" Celebrating with Food .................................................................................................. 281" Food Safety ................................................................................................................... 282" “Leisure” Reconsidered .................................................................................................... 283" Residents-Resident Interactions in Unstructured Time: Relational Gestures on the SCU ................................................................................... 287" Chapter Summary ............................................................................................................. 291" CHAPTER 9: DISCUSSION................................................................................................ 293" Residents’ Social Worlds: An Intersectional Analysis ..................................................... 294" Safety First: Space, Power, and Organizational Practices at Cedar Grove....................... 303" Balancing Risk and Freedom: Space, Power and Acts of Resistance .......................... 304" Making Decisions: Establishing Best Interests and Gaps in Practice ......................... 311" Challenges to Relational Care Practice............................................................................. 315" 1) Workload, Resident Acuity, and Job Descriptions ................................................... 315" 2) Staff Hierarchy and Lateral Power .......................................................................... 318" 3) Finding the Right Message: “Serving Tea” as “Actual Work” ............................... 320" 4) The Use of Resident Biography in Practice.............................................................. 322" Fostering Relational Care Practices: Philosophical Considerations ................................. 324" Finding Meaning in the Everyday .................................................................................... 331" Television Use in Long-Term Care............................................................................... 334" #!!!" ! Dining and Person-Centred Care ................................................................................. 340" Toward Social Inclusion ................................................................................................... 342" CHAPTER 10: CONCLUSION AND STUDY IMPLICATIONS ..................................... 348" Study Implications ............................................................................................................ 350" Overcoming Organizational Barriers—Employing an Intersectional Perspective ...... 351" Valuing Everyday Activities—Supporting Well-Being and Social Inclusion................ 352" Supporting Relational Practice..................................................................................... 354" Using Biography in Care Practice ............................................................................... 355" Mobilizing Knowledge—Toward Person-Centred Care Practice ................................ 357" Balancing Needs: Working to Keep “the Person” at the Centre of Care.......................... 359" REFERENCES ..................................................................................................................... 363" APPENDICES ...................................................................................................................... 415" Appendix A: Site Photographs ......................................................................................... 416" Appendix B: Research Poster ........................................................................................... 420" Appendix C: Presentation Evaluation Form ..................................................................... 421" Appendix D: Sample DCM Chart..................................................................................... 422" Appendix E: Sample Consent Form ................................................................................. 423" !$" ! ACKNOWLEDGEMENTS This research was made possible through the support of the Centre for Research on Personhood in Dementia (CRPD) at the University of British Columbia. I consider myself lucky to be part of this vibrant academic community. It has supported me intellectually, emotionally, and financially throughout this study. A special acknowledgement and thank-you to my supervisor, Dr. Deborah O’Connor, whose academic enthusiasm and guidance has been vital to this research. To my committee, Dr. Alison Phinney and Dr. Habib Chaudhury, I am deeply appreciative of your support and scholarly advice over these many years! I would also like to thank Dr. Sing Mei Chan. Sing Mei you have been a great support and made this long road a lot less arduous. To Maria Couto, whose leadership and friendship started me on this journey from an Adult Day Centre in East Vancouver many years ago, and who continues to provide a vibrant context for the meeting of practice and theory. Thank-you. Thanks to John and Patricia, for stuff. To my parents—for a lifetime of guidance, support, and for your commitment to political engagement—how to thank-you… I could not have finished this program without the love and support of Glen Lowry. Glen, your energy, humour, guidance, and love have helped me immeasurably; I am so grateful to have you in my life. Finally, I would like to extend my sincerest thank-you to the many participants of this research. I am deeply appreciative of your willingness to share your insights and wisdom with me, without which this study would not have been possible. $"